Coronavirus and GPA [Archive] - Wegener's Granulomatosis Disease GPA Support Forum

Masha

02-27-2020, 06:02 PM

This is a very valid question. Right now I agree with drz to take the same precautions as the flu.
My husband and I are taking a few proactive steps. We are stocking up on home supplies and non perishable food. Probably getting enough for a few months. If things get bad quickly we won’t find ourselves stressed out looking for staples.
Since my diagnosis (we both have had previous bouts with pneumonia) during flu season we avoid places with large gatherings. Yes, it is not good for us to isolate ourselves. Living in a mild climate, a short walk with my dogs allows me to interact with neighbors. If we are going to the doctors office or store, we both wear masks and clear gloves. We go to restaurants, no masks or gloves, and try to go at times they don’t have a crowd. Yes, we could catch something there, but I don’t think it is yet the time to go to extremes. If we schedule a repairman, we stress that we are elderly and have low immune systems, so that they make sure the person is healthy.
With this Coronavirus a person could have it for two weeks and not know it. We can only go so far without making ourselves bananas.
I am blessed to be married to my best friend. We never run out of conversation or find ourselves bored. Movie theatre can easily be replaced with TV services, small groups are safer than large. If we really get shut in, he will teach me to play chess and I will teach him to cook. Church is on the back burner but prayers are on the forefront.
Masha

John S

03-13-2020, 10:34 PM

I had a Rituxin treatment yesterday. Dr. Villa Forte reminded me that I’ll be very susceptible for the next three weeks. My wife and I will be self-isolating. Lots of books, Netflix, YouTube guitar lessons and if the weather warms up, bicycle.

drz

03-14-2020, 12:57 AM

My internist told me yesterday that with my health issues; diabetes, older age, GPA, several recent episodes of pneumonia, lung and kidney damage from diabetes and GPA, and a suppressed immune system from AZA; I am a poster child for highest risk for serious illness from coronavirus. And I should avoid any unnecessary social contact. So no more group activities or shopping in stores. I will use the drive thru window to pick up some medical supplies today.

I live in a senior housing complex where the average age is mid to high 80's and most of us also have various health issues. Most of the deaths in Washington State were at a nursing home where they had a Mardi Gras party to spread the virus. Not a wise move to expose such a vulnerable population to the coronavirus. Our facility is still allowing visitors and our schools are still open but expect this might change quickly once the virus is detected in our community. Or when some one decides to get more serious about protecting our vulnerable populations.

The Virus has been detected near my area but not yet in my community but our state has moved to many cancellations and precautions like limiting attendance to basketball tournament games to 90 people and cancelling many other games that were scheduled. High school basketball tournaments are big deal in Minnesota as they are in colleges too so cancelling all these sporting events is a serious undertaking. And so far our state is not a hot spot for the virus infections. The pro sports are giving up millions everyday so it is a big deal.

The sad thing is that the USA despite having one of the world's best health care systems is apparently among the worst at being prepared for the virus containment since South Korea tested more people in one day than the whole USA has tested since the virus was first detected. And we had several weeks to prepare but we couldn't even develop an accurate testing procedure. For some unknown and strange reason we did not want to use the testing procedures used by WHO for the rest of the world. Our hospitals are very concerned about being overwhelmed and are taking steps to postpone any elective procedures.

It is also amazing and very scary on how fast our lives have changed from the pandemic. One interesting tidbit is the lack of toilet paper and hand sanitizers for sale anywhere in town. The shelves are empty for these items.

richard052018

03-14-2020, 01:37 AM

drz

The lack of preparedness in the US is terrifying, especially considering what's going on in "first world" nations like Italy. As for myself, I've got about 6 weeks of food/supplies (yes, including toilet paper) and have no plans to leave the house after the next day or two (beyond shuttling my child wherever she needs to be). My employer has approved the telework. After 6 weeks if the shelves are empty it will be like the Cormac McCarthy novel/movie "The Road" anyhow.

I don't know what to expect or how vulnerable I am to this illness (doubt any of us truly know). I'm in my mid 40s, no real health issues of concern before GPA. The pred has put weight on me (I can't get below 8mg without issues: diagnosed 2 years ago). RTX I hear is h3ll on the immune system. They say 50-70% of the population will be infected with a 1-3% death rate (concentrated on the elderly and those with immune system issues), so I'm sadly preparing for the worst.

I'm myself am not worried about dying (if anything, it would relieve the crippling fear I live with daily). I just worry about the people I will leave behind, mainly the wife and kid. They don't deserve it.

Not the life I planned for myself, but I'm sure we can all can say this.

What we need right now is a real miracle. Praying for all of you.

drz

03-14-2020, 03:12 AM

One bright spot is Mayo just developed a validated test for Covid -19.

The results from the test will be available “within 24 hours,” said Matthew Binnicker, a clinical microbiologist and director of the Clinical Virology Laboratory at Mayo Clinic in Rochester, Minnesota.
“We have the expertise to create tests such as this one, and we felt it was our obligation to help ease the burden that the CDC and public health laboratories are feeling at this time," he added.
The samples will also be sent to the CDC or the Minnesota Department of Health “for appropriate follow-up testing and confirmation,” per the statement, which noted the results will then “be communicated with public health officials, per their respective guidelines.”
The test, called "Severe Acute Respiratory Syndrome Coronavirus-2 (SARS CoV-2), Molecular Detection,” has been “fully validated.” Data from the test “will be submitted to the Food and Drug Administration for review and emergency use authorization,” officials said.

drz

03-14-2020, 10:23 PM

It is amazing how fast things can change as people react to the Covid-19 pandemic. Shortly after my last post our State canceled all the high school basketball tournament games, all nursing homes and senior assisted living places in my town went on restricted visitation with procedures to try screen visitors and all staff by checking their temperature and required hand washing to enter. Only essential people are supposed to visit and deliveries will be left at door. All doors are locked for entrance but not exit for safety. Most local community events were also canceled. On a national level it seems like our Congress is trying to speed up testing and offering financial help to assist in dealing with the pandemic.

I just read that Norway is basically shutting down everything.

How are things for us users all around the world in different locales? How safe do people feel? Anyone in a hot spot area? Anyone tested so far?

NatriceRomeo

03-15-2020, 09:44 AM

Hi everyone,
I work in healthcare. I’m a paramedic for a county in St Louis Missouri. I also am on Rituxin & this virus of course has been on the forefront of my mind. I’m due in April for a Rituxin infusion & am conflicted whether to get it or deal with a WG relapse. My problem is last year, the vessels in my lungs became leaky & my lungs filled with blood. I definitely don’t want to go through that again!
You are correct in saying that America is not prepared. Every time there is an outbreak, & shortcomings realised, we don’t learn from our mistakes. A prime example is Ebola.
I feel that once someone in the community has tested positive, esp for a respiratory illness that is easily transmitted-we should assume it is now community acquired. But in Missouri they refuse to test people whom have symptoms unless they meet a specific criteria. This includes travelling to certain countries or around someone whom has tested positive. By doing this, they are missing infections & allowing this virus to spread through the community.
The district I work for has taken this quite seriously. We wear protective masks (N95), gowns and goggles on anyone whom has a fever or a cough. The hospital however are not placing these people on droplet precautions because they do not meet the strict requirements for testing! It’s very frustrating!
I hope all my friends here stay safe & healthy through this. I will be thinking of you all!
Natty

Sent from my iPhone using Tapatalk

John S

03-16-2020, 02:36 AM

chrisTIn@

03-16-2020, 11:53 AM

How are things for us users all around the world in different locales? How safe do people feel? Anyone in a hot spot area? Anyone tested so far?

I wrote a few words in the off-topic section, as it was my birthday today.
Our country is also in kind of a 'lockdown' now.
Most people who can work online do so, and stay home.
Others who work in vital sections as light, energy and transport of food and medication still go to their workplaces.
Schools will be closed tomorrow. People who work in healthcare and public services as police can still bring their children to school, they will be taken care of. We don't want the grandparents of these children to take care of them, and maybe be exposed to the dangerous virus. Children seem to have a somewhat lesser chance to be infected, but there is discussion about the fact whether they can transmit the virus.
Teachers are working on online programs, so most pupils can also do schoolwork at home.
The region I live has many people who are infected. At this time the hospitals can still do their work, but the situation worries me.
I stay at home with my husband, we see our daughter at 'skype' or 'facetime', but we can't hug her at the moment. We communicate with friends on whatsapp or by phonecalls.
Groceries will be delivered at home.
We only leave the house when strictly necessairy, for groceries we forgot, or to go to the pharmacy. I will call the pharmacy tomorrow, to see whether they can deliver medication at our home.
My husband and I both had a bit of a cold, but we did'nt get tested so far. You only get tested when you have a fever, and/or have difficulty breathing.
In general, all efforts are made to 'flatten the curve'. That means, that by taking all this precautions they hope we will not have to big a peak in victims, so that our healthcare-system will be able to manage things, and provide room at intensive-care units for the people who need it most.

NatriceRomeo

03-16-2020, 11:55 AM

I wrote a few words in the off-topic section, as it was my birthday today.
Our country is also in kind of a 'lockdown' now.
Most people who can work online do so, and stay home.
Others who work in vital sections as light, energy and transport of food and medication still go to their workplaces.
Schools will be closed tomorrow. People who work in healthcare and public services as police can still bring their children to school, they will be taken care of. We don't want the grandparents of these children to take care of them, and maybe be exposed to the dangerous virus. Children seem to have a somewhat lesser chance to be infected, but there is discussion about the fact whether they can transmit the virus.
Teachers are working on online programs, so most pupils can also do schoolwork at home.
The region I live has many people who are infected. At this time the hospitals can still do their work, but the situation worries me.
I stay at home with my husband, we see our daughter at 'skype' or 'facetime', but we can't hug her at the moment. We communicate with friends on whatsapp or by phonecalls.
Groceries will be delivered at home.
We only leave the house when strictly necessairy, for groceries we forgot, or to go to the pharmacy. I will call the pharmacy tomorrow, to see whether they can deliver medication at our home.
My husband and I both had a bit of a cold, but we did'nt get tested so far. You only get tested when you have a fever, and/or have difficulty breathing.
In general, all efforts are made to 'flatten the curve'. That means, that by taking all this precautions they hope we will not have to big a peak in victims, so that our healthcare-system will be able to manage things, and provide room at intensive-care units for the people who need it most.

Happy birthday!
What country do you live in?

Sent from my iPhone using Tapatalk

chrisTIn@

03-16-2020, 11:57 AM

The Netherlands!

Masha

03-16-2020, 04:17 PM

This thing has taken us all by storm.
I will start with a little levity. The police in Oregon put out a statement for people to stop calling 911 because they ran out of toilet paper.
I live in an active adult community, you have to be over 55 to move in, most people are septuagenarians. We have individual homes. There are amenities like clubhouse, pools, gym etc. Fortunately management closed everything for the next month and said if people use the outdoor facilities they do it at their own risk. After my diagnosis three years ago I realized people would attend meetings and clubs no matter how sick or contagious they were. If they walked past me, I would have a cold that went into something serious. I realized then that I couldn’t change anyone else, I could only change myself. So I stopped all threatening interaction. We remained here because as you all know, some days I just didn’t have the strength to get the mail let alone move. We like our house and eventually accepted we would just go with good days, bad days. Today I say Wegeners might be a blessing because I can handle staying in. There are 12 houses on our block, people in their 70’s and 80’s. Absolutely, not one household in good health, cancer, diabetes, strokes. Think of it and it’s here. Well, I talked to some of them over the phone and they refuse to stay home, going mall shopping, out to eat, casino trips. They say if they had to stay home they would go crazy. Wegeners, you taught me how to play it safe. Now get this, I am the youngest one on my block. Neighbors have been kind enough to offer to shop for us. Not necessary. Last year when both my husband and I were simultaneously sick, I swore I would always be prepared in the food and paper goods, not extreme hoarding but we’ll get by just fine. We also have two grocery stores doing deliveries for $5, but I hear their shelves are currently empty.
Now, you will all find this interesting. My checkup at Duke was scheduled for this week. Not infusion, just a basic consult and I am actually feeling pretty good. At first we had hotel reservations and picked a nice restaurant. I even had a few shops I wanted to checkout. Then this Covid19 mushroomed like grease lightening. Next, I heard Duke was going to online classes. I cancelled my appointment and received a warm and encouraging note from my doctor in complete agreement that we should stay home and stay safe. Coming from someone who has specialized in this field confirms my decision.
We have sidewalks and walking trails, so we won’t be confined inside. Very small front yards, so I will do a lot of people watching. My husband is going places through the travel channel.
We do not have a handle on how many people this has hit in the US. Whenever I hear that older adults with a compromised immune system are most at risk my stomach does a somersault.
I am not taking this lightly, the unknown is frightening. At first I was watching too much news, but tonight we watched a ridiculous movie and ate pasta. So glad we have two poodles who keep us in stitches.
drz, John, Richard and all, I am so glad you reached out and told us what is going on in your homes and neck of the woods. This contact with all of you faced with our challenges helps. I am praying for all of us.
Stay safe.
Masha

richard052018

03-17-2020, 12:37 AM

Masha,

It is sad to hear (a story I hear all over) that people are not taking this seriously. For your elder neighbors, maybe they'll get it when they are gasping for air and there are no available ventilators, or better yet, if you're over 80 (or 70, 65, 60) and the government tells you "you're on your own", as they are about to do in Italy.

https://www.dailymail.co.uk/news/article-8116223/Italian-coronavirus-victims-80-not-receive-intensive-care.html

Even better, all of these selfish people that can't be troubled with fighting a pandemic by staying indoors are going to bankrupt the healthcare industry, then when people like us go to get our RTX infusions, there won't be any money left to pay for them (if there will be any RTX at all, it's manufactured in China).

Maybe future generations will learn from our decadence that it cannot exist without gratitude and responsibility. Maybe American leaders will also learn it isn't wise to outsource critical infrastructure like the production of medicine to our geopolitical rivals.

As they say, Good Times create Weak Men, Weak Men create Hard Times, Hard Times create Strong Men, Strong Men create Good Times, and the cycle repeats.

I apologize for being so fatalistic. I hope horribly wrong on all this. I just wish I had my old strength to protect my family, and I'm experiencing every emotion that goes with having that strength taken away.

gilders

03-18-2020, 04:28 AM

chrisTIn@

03-18-2020, 05:43 AM

It's very sad to read this, Gilders.
I hope you can take precautions, and can get the help you want when needed.

gilders

03-19-2020, 12:22 AM

It's very sad to read this, Gilders.
I hope you can take precautions, and can get the help you want when needed.

My wife works at a supermarket. Supermarkets are where the largest crowds are, so the chance of infection is VERY high. It's also where people who are just beginning to feel ill rush to, to stock up on supplies, spreading the virus as they go.
The Prime Minister has advised that "it will be necessary to go further and to ensure that those with the most serious health conditions are largely shielded from social contact for around 12 weeks.". My wife has been to work and thankfully they are honouring her request for a 12 week break from this Sunday. BUT it will have to be unpaid as the wording of the PM's statement means it's not a legal requirement, so her company says it's her choice to self isolate, not law, so they won't pay.

Thankfully I have a great family who will help out with bills over the coming weeks.

My son, who lives about 30 miles away has coronavirus at the moment. He has been struggling to breath, but he has received no help apart from his next door neighbour who posted an inhaler through his door (this has been helping him and he seems to be slowly recovering).

Take care everyone and please take this virus seriously.

chrisTIn@

03-19-2020, 04:04 AM

My thoughts are with your son. I am hoping for sure that he will have an ongoing recovery.
Good to hear that your wife can take a break from work, and that you have such nice and supporting family-members.
I also hope that your government will reconsider making financiel arrangements.
Here in The Netherlands all kind of financial arrangements are made for people who don't have an income due to the coronacrisis.
Wishing you the very best, hope you all stay as healthy as you can!

drz

03-19-2020, 04:07 AM

Lots of discussion going on as every place and people try to deal with steps to contain the virus. Changes and rules happen very quickly which just contributes to the chaos and stress. But for the most part I am impressed at how well most people seem to be about accepting restrictions. Of course there will always be those few who don't think the rules apply to them or others who fail to appreciate the seriousness of the pandemic. Italy made a good video about how many people there didn't take it seriously and now they are telling the world not to make the same mistake they did.

It bothers me that some people and organizations are deliberately spreading false information intended to increase anxiety or to deny the seriousness of pandemic in order to try calm down their own population after they bungled their preparation for the pandemic. Muzzling and censoring the medical experts seems a very poor reaction and unhelpful to me but many governments have done it and are still doing it.

Our major news outlets in USA reported the following: "The Centers for Disease Control and Prevention submitted the plan as a way of trying to control the virus, but White House officials ordered the air travel recommendation be removed, said the official who had direct knowledge of the plan. Trump administration officials have since suggested certain people should consider not traveling, but have stopped short of the stronger guidance sought by the CDC."

At least our news outlets are still free to publish news like this which they could not do in many countries. The lack of getting good accurate information hinders the ability of the world to contain the virus since the virus has now spread around the world.

Right now most places are rushing to try find a way to reduce the financial impact upon people hurt by shut downs and trying to increase the supplies and testing equipment we need to test and treat the increasing population of people affected by the virus. We don't have adequate testing available in our area yet and that might be a few weeks away but so far our hospitals are not overwhelmed since we have no confirmed cases yet in our area.

I appreciate that many people recognize our extreme vulnerability to the virus because of our GPA and suppressed immune system and related complications. I know everyone here will do their best to try stay safe and hope we all can succeed in doing so.

drz

03-19-2020, 04:28 AM

Based on results of clinical trials conducted with affected patients in both Wuhan and Shenzhen by Chinese medical authorities, Japanese-made flu drug favipiravir (also known as Avigan) has been shown to be effective in both reducing the duration of the COVID-19 virus in patients and to have improved the lung conditions of those who received treatment with the drug.
The trials involved 340 patients in total, and since the drug has already been developed and approved for use in treating flu, it has a "high degree of safety," according to China science and technology ministry official Zhang Xinmin, who spoke to reporters on Wednesday according to The Guardian (https://www.theguardian.com/world/2020/mar/18/japanese-flu-drug-clearly-effective-in-treating-coronavirus-says-china). The tests showed a reduction in the period during which patients tested positive for the new coronavirus from 11 days down to just four, and showed improvements in the lung condition of around 91 percent of patients treated with favipiravir, compared to just 62 percent for those without among the trial participants.
The Chinese studies are not the only attempt to test the efficacy of the drug in COVID-19 treatment – Japanese doctors are bonding their own studies. A Japanese health ministry source told Japanese newspaper the Manichi Shimbun that the drug so far has been given to around 70 to 80 people, but that early results suggest it isn't effective in treating those with more severe symptoms where the virus has already multiplied to a much greater extent.

Still, a treatment that is effective in reducing the duration of the presence of the virus even in milder cases, and in lessening the impacts in moderate symptomatic patients, would be a huge benefit to the ongoing fight against the coronavirus. Any approvals for use of favipiravir would, of course, require further clinical testing, followed by approval of widespread use by each country's relevant medical treatment regulating body.

Other drug treatments have been tested for COVID-19 treatment, and are in the process of development, but no antiviral has yet been approved or created specifically for dealing with the new coronavirus. Other drugs that have shown early promising signs include remadesivir, a compound developed by Gilead Sciences that has shown some promise as a general antiviral (https://www.statnews.com/2020/03/16/remdesivir-surges-ahead-against-coronavirus/).

AFP

Fujifilm shares soar after China backs drug to treat virus

Masha

03-20-2020, 04:10 PM

A big shout out to our doctors, nurses and health care workers working tirelessly for all of us. Thanks too to police and firemen keeping us safe. Truck drivers bringing supplies to us and farmers producing that food are another group to be recognized. I am probably missing some important people, so as you think of them, add to our list.
You see the good and the bad of humankind at tragic times. People are offering to shop and help elderly and sick. The bad are those who don’t care if they have a mild case and pass it on. Those of us with GPA must not hesitate to ask for help if we need it. Just heard on TV that deliveries should be left at your door. Most of my neighbors have begun to take this seriously. Having everything closed helps too. Some neighbors have called to ask if we need help. Having this disease and not knowing when smoldering or a flare will occur, I’ve learned to always keep our shelves well stocked. We have enough healthy frozen vegetables and it would be far more dangerous to run out for a couple fresh things.
This is the part when I will share something funny with you. I talk to a childhood friend on occasion, more now with the crisis. She was a dietitian. I said I have been making some comfort food. She was making veggie burgers, no bun. Just as I was feeling guilty she burst out laughing and confessed she just ordered 40 candy bars!
Of course our health and welfare is foremost. But thinking about the long term economic impact is frightening. Small businesses must be desperate.
None of the people here have good blood, but I am just listening to a report on severe blood shortages. If you know anyone healthy enough to donate, now is the time.
I check this forum frequently and wonder about all of you. It is my wish and prayer that we all get through this. Do any of you have family in Italy? Heart breaking.

richard052018

03-21-2020, 01:47 AM

Let's not forget our warriors on the front lines at the Grocery Stores and Pharmacies ensuring we have the food and medicine we need. These are the folks that have to work around all the coughing people fighting over toilet paper. Some states are even classifying grocery clerks as emergency workers:

https://www.cnn.com/2020/03/19/business/states-grocery-workers-emergency-trnd/index.html

John S

03-21-2020, 02:24 AM

me2

03-21-2020, 05:37 AM

drz

03-21-2020, 06:53 AM

When I was initially put on Retuxin, Dr. Villa Forte prescribed a liquid antibiotic that was yellow and had a disgusting taste. (I am allergic to sulfa.) Out of mercy, she changed the prescription to a monthly breathing treatment of Pentamadine. This tasted just as terrible but it was only once a month. I have continued the monthly breathing treatment but now I'm worried about it.
When I go for the treatment, I have to deal with parking valets, sick people in the waiting room, 2 receptionists and 2-3 medical techs. Not only am I at risk myself , the medical professionals involved could also be dealing with more critical patients. I am requesting to go back to the old antibiotic.

Our state has canceled all non-essential medical services so I will find out next week if my monthly Pentamadine treatment is considered essential. Last week my internist thought I should take it as we have no confirmed cases in our town but then we have not tested any one either due to strict criteria of our State guidelines use because of a shortage of testing equipment.

Our hospital screens everyone who walks in and they will give us a mask to wear as do the staff who give the treatment but I admit I am still a bit anxious about going in for the treatment. I wonder if it will help us in anyway to not catch the bad virus.

drz

03-21-2020, 06:59 AM

Hi John,
I'm not familiar with your whole story so what I say may be of no use. I do an inhaled antibiotic (Tobramycin) at home with a nebulizer. I had pneumonia and this is to help keep my lungs free from bugs. It has been working really well for me.
Also, you many already know, there is a desensitization program for sulfa that has a high success rate and is not hard to try. It worked for me. You take super small doses of sulfa in increasing amounts.
I was allergic but now I can take it just fine.

I tried the desensitization protocol a few years back and I was terminated from it on the second day as my throat started to tighten up. Other wise as I recall it was a 20 day procedure so I went on the monthly Pentamadine routine plus I take the non-sulfa part of Bactrim daily.

I have had several incidents of pneumonia and bronchitis this winter. Twice I was in-patient with IV antibiotics but no one has suggested your routine for me. If I get another incident I will ask about it as an option. The doctors tell me I get them because of my suppressed immune system from my AZA maintenance meds and it is the normal bacteria in my mouth that infect me.

Masha

03-21-2020, 08:16 AM

You are all justified with your concerns. Not only are we aware of our compromised immune system, but we must free up medical personnel from non essential treatments. John, if there is the option you mentioned go for it.
I have cancelled all of our doctors and dentist appointments for the next two months. But just 30 minutes ago when the Prime truck came with a delivery he handed it to my husband who was standing in the garage. So much for the keep your distance rule. At least husband didn’t touch it with bare hand, he used his shirt, which I immediately had him put in wash.
People in our development were out playing pickle ball and tennis yesterday. The guy across the street just went shopping for a bouquet of flowers. And I am a nervous wreck about touching things. Go figure.

drz

03-21-2020, 09:50 AM

I read that younger and older people are most blase about physical distance for safety. For me the memories of fighting for air when I was drowning in my own blood ten years ago for weeks in ICU is a vivid memory. This reminds me of why I want to try stay safe so I am willing to work hard to try do it.

I know I can get sick with pneumonia and bronchitis and have breathing problems even while staying at home with no contact as I have been in hospital twice this winter with IV antibiotics and twice with out patient antibiotics with a stay at home treatment. The doctors say these infections come from my normal bacteria due to my suppressed immune system from GPA, AZA and pred meds, diabetes, and age. My doctor said I am the poster child for a very vulnerable patient so need to be extra careful since I have almost all the risk factors plus the lung and kidney damage from the GPA and diabetes.

Now if I was younger in good health my views would undoubtedly be much different. When we young many of us thought we were bullet proof and invincible so we thought little about the risks we took. Now we know better. So we tend to be wiser and more careful. But we weren't born that way and often paid a price to gain this wisdom.

I now live in a Senior Living complex where everyone is older or in poor health so the virus would most likely raise havoc in this facility. Many Nursing Homes have high rates of infection and resultant deaths so high precautions are warranted but difficult to apply. Many seniors need physical help and want touch. Many have lower cognitive ability and can't remember the need for physical distance for safety. Others are unable to understand the risk of this virus. And some family members and friends of residents don't see the need for the precautions so they ignore them and thus endanger us all. But even if ignore them, the risks are not likely to go away anytime very soon so we all have to try do our best to stay safe and healthy as we can.

John S

03-24-2020, 02:04 AM

I was scheduled to get a Pentamadine treatment this Thursday. I emailed one of my local rheumatologists and she will prescribe an antibiotic that I can take at home.

chrisTIn@

03-27-2020, 11:43 AM

Middlesista

03-27-2020, 10:54 PM

Nurses with GPA who are immune suppressed - are any of you working in acute care?

richard052018

03-28-2020, 07:49 AM

gilders

03-28-2020, 08:59 AM

It's a tough call. Your wife has a good point, but as symptoms don't appear for 5 days, the people who are contagious now won't even know it. But this isn't going to go away any time soon, so how long realistically would you chance going without blood tests??
If I was in your position, I would go Monday as it's probably going to be the "safest" period for a long time. Then if everything seems stable, I'd try and leave my next blood tests as long as possible.

I was fortunate with my blood tests as all clinics have switched to telephone (except for the most recent transplant patients), so the blood test room was empty with nobody waiting.

chrisTIn@

03-28-2020, 11:01 AM

I've got my labs scheduled for Monday and I'm terrified. My rheumy is following extreme protocol. No one is allowed in the waiting room (people wait in the car). They text when you can come in: only one patient allowed in the lab at a time. Most appointments are now virtual (including one I had this week), so apart from people getting infusions, the staff, the office is empty. Can't do labs virtual though. I don't know what to do. I know we are supposed to have our labs every 4-6 weeks. I haven't had mine since mid-Jan. Doc thinks it would be smart to get labs done now. Wife thinks I should go now before this virus peaks in 2 weeks. I'm thinking I feel well and monitor my urine from home, so why bother.

Has anyone else had lab work during the zombie apocalypse?

The lab seems to follow a good protocol: patient waiting in the car till asked to come in by textmessage, no one in the waiting room. My only concern is the staff. Are they tested, do they take strict hygienic precautions, do they have protecting masks on their faces, do they follow hand cleaning procedure?
If you hestitate to go to the lab and still have questions, in your case I would call the lab and ask what precautions the staff takes to minimize the risk any further. People (also healthcare workers) can be contagious even if they don't have symptoms yet.

richard052018

03-28-2020, 12:10 PM

The lab is at the rheumy office, and they are all aware of the vulnerable population they service. The protocol is very strict. My appointment is at opening time. I guess all I can do is go for it and hope for the best or skip the labs and hope the GPA stays at bay.

vdub

03-28-2020, 01:49 PM

I don't get on the forum that much anymore. That doesn't mean I'm totally well or terribly sick, but rather I'm just overwhelmed by doctor appointments and trying to keep my drugs in stock. I'm pretty tired of all things wegs. I'm glad there are super members who are keeping the forum going. I stop in once in a while to just look things over and read some of the posts, but I have little to add to what you guys have already said. Good job guys/gals! Its appreciated by a many, many people....

drz

03-28-2020, 03:06 PM

Alysia

03-28-2020, 07:39 PM

Thank you for being here, my beautiful friends, and for your encouragement, kindness and wisdom. I love you. Sorry for not writing earlier. I've been so scared in the last month that even reading and writing is an effort.

It is going to be a very long post. Sorry.

Things are getting worse too fast in Israel too. This morning 3035 cases and 12 deaths and the numbers are up every few hours. We are tiny and crowded country and the health system is overloaded on a regular basis, so things are rough.

I work from home and my kids also learn and work from home. I am grateful for that and I tell them that we are in our own Noah's Ark, but with cats (5 cats).

I have not been to a public place since March 12 and it was only for a fast shopping. Since then I do online or phone delieveries. On March 9 I had a lazer procedure to fix my secondary cataract which went well. There were too many people in the eye hospital and I was scared like hell to be there. I hope I didn't contracted the virus there.

My colitis is reacting to the stress and I have diarreah waking me up very early every morning.

My WG is also reacting. My dry cough is getting worse. It was so bad a week ago with shortness of breath (but no fever) so I asked for a video consultation with a dr. She was great and prescribed all nebulizing meds she could and told me to try and see which one works the best.

The problem with covid19 is that it has few symptoms similar to WG: coughing, shortness of breath, fatigue, aching body and even loss of smell and taste.

So I was scared like hell that my coughing and shortness of breath might be covid19. I don't mind being sick as much as I dread infecting my kids or my parents. My parents are old and live near and need me to be there for them every few days.

The dr. On the video said that it is probably WG. She prescribed also Azenil which helped although not all the way. The shortness of breath has almost gone. Intersting thing is that at that night they said on the news that Azenil might be helpful for covid19.

After finishing the Azenil I elavated my pred from 5mg to 10 mg. Today is day 5 with 10mg pred. It helps but still not all the way. My dry iritating cough is still here. Last time it went away only after the rtx.

I need to get rtx at the end of April. But I am not going anywhere public until the plague is over. Just thinking about it makes me run again to the toilet. No way.

I wrote an email to my wg dr. And asked if I can get rtx at home. He wrote back kind of angry, saying that I need to get it in a hospital setting because of possible side effects. I've become angry too, thinking (but not writing to him), "Come on, you trust the health system. I DO NOT ! The virus is every where." The risk to be infected is bigger then the risk of rtx side effects at home. I will have to set a video meeting with him to discuss my options and risks. They worked in a foolish way and in almost all the hospitals they got medical teams isolated or sick because of an exposure to the virus.

My coughing makes me more stressed. Might be Wg flare or smoldering. Sometimes I am still afraid it might be covid19. Although my family is healthy, Thank God, so I guess it is not. Also, They will not check me, I guess, and I don't want to be checked. I can get infected from the one who checks.

I have all meds for nebulizing but I dont know which one to use, how much and when. I sent a fax to my lungs dr. But he didn't phone me back. (Yet ?)
I guess docs are overwhelmed.

The meds that I have are :
Saline bottles 5ml
Aerovent 0.25ml
Terbulin 10ml
Budesonide 1mg

Does any one here use any of those ?
I don't like the idea that the video dr. gave of just trying. But if my lungs dr. will not call me back, I guess I will have to try. I am tired from coughing.

Through all those stressful days, at least, I am glad that my beautiful Phil is not at risk anymore and is safe with Jesus.

I also find comfort in reading psalm 91, I quote few powerful verses to lift us up:

"Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress,
my God, in whom I trust.”

Surely he will save you
from the fowler’s snare
and from the deadly pestilence.

He will cover you with his feathers,
and under his wings you will find refuge;
his faithfulness will be your shield and rampart.

You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.

A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.

If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,
no harm will overtake you,
no disaster will come near your tent.

For he will command his angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone.

“Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
With long life I will satisfy him
and show him my salvation.”

Amen.

Stay safe, my friends. May Our Lord protect you and bless you.

P.s. I've found my old post about my dry cough here https://www.wegeners-granulomatosis.com/forum/threads/5918-Dry-cough

chrisTIn@

03-28-2020, 11:45 PM

I will have to set a video meeting with him to discuss my options and risks.

Hi Alysia. Good to know that you and your family are safe right now.
I sure hope you will succeed soon to set up a video meeting with your Wegs-doc.
It must be a relief for you that the shortness of breath has gone.
I hope the cough can also be treated soon, and that you can talk it over with your doctor.

John S

03-29-2020, 12:30 AM

I am skipping my labs this month. I had a Rituxin treatment on March 13th so I have been home bound since the 14th.

gilders

03-29-2020, 03:56 AM

Hi Alysia,
I hope you can continue to order groceries online or over the phone. As so many people are self isolating and the whole country is almost in lockdown, all delivery slots are fully booked before you get chance to find a slot here in the UK.
I'm pleased to hear that your cataract surgery went well.
If you haven't got any new symptoms after 5 days since you last left your home, you shouldn't have COVID-19.
I am not happy with all the panic buying and stock piling of items such as toilet paper, but you have a medical reason for needing more than the average person, so I'd try to stock up on some if possible.
I use Budesonide in my nasal rinse. It was REALLY painful the first few times. It felt like brain freeze followed by a stinging and itchiness just under my scalp. It does seem to help a little and those side effects only happened the first few times.

Keep safe and well.

Masha

03-29-2020, 08:52 AM

I read that the USA has now more confirmed Covid-19 patients then China. Most contaminations are in New York city.

https://gisanddata.maps.arcgis.com/apps/opsdashboard/index.html#/bda7594740fd40299423467b48e9ecf6

I sure hope everybody on this forum was able to take precautions, and to talk through with the doctor in charge, what is best in your specific case.
Stay strong, everybody! :smile1:

I am so glad to hear from those of you checking in. If others feel like it let us know how you are doing. We are the folks referred to with compromised immune system. I have a double whammy because of my age. Sheltering in place!
Richard, I have been thinking about you since yesterday. Your doctor said you need these blood tests and the office is taking precautions, also your wife is right, it won’t be safer in two weeks. Those things taken into consideration, you must also take precautions. Wrap a scarf around your face, wear gloves, remove shoes and clothes in garage and head straight to shower. Not my ideas, just told this by the father of an MD this AM. A runner said he was safe, the doctor said not if you pass a person who sneezes, you can’t outrun a sneeze. Just heard from my ENT’s office, a worker has it. This after many emails about the precautions they are taking.
Alysia, my prayers are crossing the ocean to you and your family. Like you, I haven’t been able to read or even do watercolors. Unfortunately, I find myself addicted to the news and I know that is not healthy.
I am cooking, trying to get creative for the long haul. We are well stocked and I order little things from delivery.
Husband had to go out for my meds today, went to drive in window, took his own pen, wore mask, gloves and goggles. Some people in my retirement community are not taking this seriously, others are. One woman asked what salons were open, her roots need done. Another answered “ Does she want to look good for her coffin.”
I am staying on my Bactrim and 10 mg of prednisone. Not the time to try to reduce and get an infection. My scalp psoriasis has started to act up, but a treatment just got delivered an hour ago.
My infusion scheduled for April has been canceled. I am hoping by June this thing has started to cease.
All doctors appointments have been rescheduled. They only want emergency patients.
How about our lupus cousins. Some are on the med they are talking about for the virus. Evidently they have taken it away from some lupus patients and treating covid 19 with it. The lupus foundation is up in arms over this. What a mess.
It is hard to come up with a light thought during these times. But here are a few.
I gave one of my dogs a haircut. He looks like a street urchin. The other one won’t come near me- all true.
The next is a joke.
They told me all I needed for the grocery store was a mask and gloves.
They lied. Everyone else had clothes on.

Pete

03-29-2020, 11:34 AM

My wife and I are doing ok. We’re both prime targets for the virus being in our 70s and being immunocompromised (She has autoimmune hepatitis and takes 75 mg/day of immuran.).

We go to the grocery store about every two weeks and really stock up. We got take out bbq once from our favorite place. This weekend, we celebrated our granddaughters’ birthdays (ages 7 and 5). They’ve been out of school for over two weeks, so we visited them for dinner yesterday. It was good for all our spirits.

Our house is on a city bike/hike trail. I’m walking a bit over two miles a day. The trail has been busier the past few days because it’s been unseasonably warm. No socializing on the trail.

That’s been about all we’ve done. Doing more reading. Getting ready to do some small projects around the house (painting woodwork and landscaping). Disappointed that local golf courses are closed...

John S

03-30-2020, 12:30 AM

drz

03-30-2020, 02:08 AM

We learned that Walgreens allows shopping their store through the drive up window. The “convenience store” items there are pricier in many instances but it is nice. We told the girl in the window about things we wanted and she sent a shopper into the store. The only physical interaction was putting our credit card in the drawer.

How do they get the items from the store into your car cause the drive thru windows are rather small? Does some one bring them out and give them to you?
I learned our Walgreens says they will only get small items like over the counter meds tht will fit in the drive thru drawer.

I learned you can order many items off their web site and some can be shipped to you. I ordered some over the counter meds that way.

chrisTIn@

03-30-2020, 03:22 AM

Here in Europe (The Netherlands) we also order groceries and over the counter medication online.
The guy that delivers the groceries nowadays offers the possibility to pay without any contact.
He shows his smartphone-screen from a distance of 6 feet, on which you see a socalled QR-code.
You scan that code with your own smartphone (maybe by taking a small step forwards I guess, my husband took care of it yesterday).
Then you immediately recieve the bill and pay with your own banking-account online.

annekat

03-30-2020, 09:22 AM

I have all meds for nebulizing but I dont know which one to use, how much and when. I sent a fax to my lungs dr. But he didn't phone me back. (Yet ?)
I guess docs are overwhelmed.

The meds that I have are :
Saline bottles 5ml
Aerovent 0.25ml
Terbulin 10ml
Budesonide 1mg

Does any one here use any of those ? [/url]

Hi, Alysia, I'm not reading the forum the best way so entirely missed this thread until very recently and it will take some time to get through it. So need to stop using Tapatalk and get back on computer but found my login there had expired. So will re-register with new password.
I recently got a nebulizer but the only med I have is albuterol, which might be same as aerovent for you. Just a guess. It helps some but I don't use it much because it has caused problems in the past, in an inhaler, which I still have and only use for rescue. Too much albuterol made my asthma worse, back when it was all I had. Plus it can cause heart palpitations, but usually not if not overused. Everyone is different, but it's not my first recommendation except as a rescue inhaler.
As for budesonide, that's a steroid and I use it in an inhaler twice a day, and it's very effective and does not cause problems. I intend to ask my lung doc to prescribe it for the nebulizer, next time I see him. Unfortunately, in my town, docs haven't offered me the chance to email or call them directly with issues. But I can call his nurse if there's a real issue, and will get results, and can ask about emailing. For now, I'm getting by fine with the steroid inhaler but am curious about using it with the nebulizer, since I have it as an option. I don't know what Terbulin is, but the saline sounds interesting and I don't think it could hurt, since we use it in our noses.
Maybe someone else has replied, I'm way behind on this thread! I enjoyed the biblical verse, and certainly do understand your nervousness about what is going on. It sounds worse in Israel than in my county of Washington state, no doubt because your population is more dense. But I'm ever mindful it will probably get worse here. No one here was prepared for this, parts of our country are in huge crisis, as you know, and not enough was done in the early stages. That's probably true for just about anywhere. Love to you and your family, may you all be safe, and I think of you often!

Sent from my MotoE2(4G-LTE) using Tapatalk

richard052018

03-30-2020, 09:28 AM

Masha: thanks so much for your thoughts. The plan is to go with goggles, mask (hopefully they won't think I'm robbing the joint), gloves, full skin cover, bringing a towel, clorox wipes container in hand, hand sanitizer in the car. I don't care how hard they laugh at me.

You also make a great point about shoes. This virus can live on shoes for 5 days, so anyone who leaves their home should have a designated pair of shoes for such a purpose, and these shoes should not come into the home.

Wash your hands everyone, and stay home.

annekat

03-30-2020, 05:22 PM

I went in two days early for my Pentamadine treatment for same reason. We had no confirmed cases in town yet or suspected cases being treated in the hospital so this was as safe a time as it is likely to be for next few weeks. Not sure how things will look in a month or what i will do or can do then. But i am fearful about having to go to the ER for any reason or any other medical clinic. Most are closed here so not too likely to happen very soon.Hi, drz. I'm doing OK here and may say more later when I can get logged in on my computer. I am on my phone, on Tapatalk, and realize I've been missing some threads.
I did get your private message and wrote a pretty long reply. Then I wasn't sure it was sent, as it didn't show up after yours. It was probably sent, and that's just how Tapatalk does it.
Edit: NEVER MIND! I just found my list of sent items and know it was sent. So all is well. Hope to see you soon on the REAL forum.

Sent from my MotoE2(4G-LTE) using Tapatalk

Masha

03-31-2020, 01:30 PM

Richard, how did it go? Let them laugh, better to be smart than sorry.

richard052018

03-31-2020, 02:52 PM

Masha,

I got a call late Sunday night for a mandatory "ALL HANDS" call with my employer Monday AM, so I had to move the lab appointment back to Wednesday. I had to be on the call because I was wondering if I would still have a job. Thankfully I do. Sadly, some of my colleagues do not. I thought they normally laid off people on a Friday, but tomorrow is the end of the pay period, so I guess they want the boundaries to be clean. These are very hard times.

Nonetheless my gloves, goggles, mask, and Disney Rain Poncho are in the car. I like your idea of a scarf too. Thinking of putting a trash bag over the armrest of the chair they make one sit in to take blood. I know: I'm crazy.

I'll check in Wed. Afternoon.

richard052018

04-03-2020, 02:02 AM

Masha,

I dialed it down a little, just goggles and mask. Major Hand Sanitizer once back to the car. Hoping for the best. Take Care

John S

04-03-2020, 03:49 AM

Today marks 21 days of "shelter in place" for us. We have completed 4 jigsaw puzzles, watched the entire Marvelous Mrs. Maisel series and eaten all of our Twix bars.
Don't get me wrong, I am grateful to have a home to shelter. There are folks around the world that don't have these luxuries.

drz

04-04-2020, 12:51 PM

The following is forwarded from Irene Ken a physician whose daughter is an Asst. Prof of infectious diseases at John Hopkins University.

Informative medical science facts...
In our community chat this useful excellent info helps all to avoid contagion https://mail.google.com/mail/e/1f47e.

* The virus is not a living organism, but a protein molecule (DNA) covered by a protective layer of lipid (fat), which, when absorbed by the cells of the ocular, nasal or buccal mucosa, changes their genetic code (mutation), and convert them into aggressor and multiplier cells.

* Since the virus is not a living organism but a protein molecule, it is not killed, but decays on its own. The disintegration time depends on the temperature, humidity and type of material where it lies.

* The virus is very fragile; the only thing that protects it is a thin outer layer of fat. That is why any soap or detergent is the best remedy, because the foam CUTS the FAT (that is why you have to rub so much: for 20 seconds or more, to make a lot of foam). By dissolving the fat layer, the protein molecule disperses and breaks down on its own.

* HEAT melts fat; this is why it is so good to use water above 25 degrees Celsius for washing hands, clothes and everything. In addition, hot water makes more foam and that makes it even more useful.

* Alcohol or any mixture with alcohol over 65% DISSOLVES ANY FAT, especially the external lipid layer of the virus.

* Any mix with 1 part BLEACH and 5 parts water directly dissolves the protein, breaks it down from the inside.

* The virus is not a living organism like bacteria; we cannot kill what is not alive with antibiotics, but the virus quickly disintegrate its structure with everything mentioned above.

* NEVER shake used or unused clothing, sheets or cloth. While the virus is glued to a porous surface, it is very inert and disintegrates only between 3 hours (fabric and porous material), 4 hours (copper), 24 hours (cardboard), 42 hours (metal) and 72 hours (plastic). If you shake or use a feather duster on above materials, the virus molecules float in the air for up to 3 hours, and can lodge in your nose.

* The virus molecules remain very stable in external cold or air conditioners in houses and cars. Viruses also need moisture to stay stable, especially n darkness. Therefore, dehumidified, dry, warm and bright environments will degrade them faster.

* UV LIGHT on any object breaks down the virus protein.

* The virus CANNOT go through healthy skin.

* Vinegar is NOT useful because it does not break down the protective layer of fat on the virus.

* NO SPIRITS, NOR VODKA, help. The strongest vodka has 40% alcohol, and you need 65%.

* LISTERINE helps if it has 65% alcohol.

* The more confined the space, the more concentration of the virus. The more open or naturally ventilated, the less.

* Wash your hands before and after touching mucosa, locks, knobs, switches, remote control, cell phone, watches, computers, desks, TV, etc. And when using the bathroom.

* Use MOISTURISER to humidify hands which tend to be dry from so much washing. Virus molecules can hide in the micro cracks of dry hands. The thicker the moisturizer, the better. * Also keep your NAILS SHORT so that the virus does not hide there.
TAKE CARE & STAY SAFEhttps://mail.google.com/mail/e/1f495

https://ssl.gstatic.com/ui/v1/icons/mail/no_photo.png

John S

04-04-2020, 11:56 PM

https://youtu.be/e0-2XxgHIXkDrZ,
please add “Stay the f@!# at home” to your list

chrisTIn@

04-05-2020, 02:19 AM

Staying at home, and, when you have to go out to shops or pharmacy, practice social distancing certainly is the most important of all!
In our country people are even asked not to go to national parks (a lot of the parkings have been closed).
People that do go to the beach to take a walk are with the help of drones asked to keep at least 1,5 meter of space beteen them.
Most people take their responsebility, but the few who don't can get fined for over 400 USD.

Masha

04-05-2020, 12:24 PM

Drz, the medical info you put out is great. My husband printed it out and we are following it. John, Mrs. Maisel is hilarious, so is the song! Marta, you are right on- when someone complained to me about the pandemic, I said ‘welcome to my world.’
Cris & Gilders, so hard to believe you are so far away, yet we all share a bond.
I am praying none of us have a flare or even smoldering. My wonderful rheumatologist is retiring in June and I am set up to see a new one in July. Hope it is safe for infusion then. The virus is supposed to return in fall or winter and we all want to be prepared.
My husband and I are grateful for each other and our home. What a tragedy for street people. I just heard two NY nurses committed suicide.
We are watching Ozark on Netflix. And oh, are we eating. I need to social distance myself from my refrigerator. I am getting creative in my cooking, baking bread, made my own thousand island dressing. Making Chicago beef tomorrow. So much can be delivered and I think many people will continue their new normal after this is over. Since no one is coming in our home we are keeping our snacks in bins in the kitchen. We look like the concession stand at a movie theater.
Anne, are you still making pottery? Has this had an effect on your business?
I hope all of you who are still working are being extra careful. Do we have anyone from NY? I think Whatthewhat is from CA, how is it out there. The Carolinas are getting ready for their surge. Like Pete, we are old and sick, so just sheltering in place. One way not to touch your face- hold a glass of wine in each hand!
Masha

vdub

04-05-2020, 01:44 PM

<quote>I just heard two NY nurses committed suicide.<quote\>
I haven't heard of 2, but I did hear of one in NY, one in Milan, and one somewhere in the UK. Interestingly, all of them committed suicide because they had contracted COVID-19 and were afraid of spreading it to others. I think there must have been more going on, though, stress, exhaustion, and personal matters.

I love the idea of how to keep from touching your face. I assume beer will work instead of wine.

I saw my primary doctor exactly a month ago. He told me I'd have a difficult time surviving if I got the virus, due to my paralyzed right diaphragm. The diaphragmatic plication I underwent several years ago has given way to a degree and reduced my lung capacity to about 52%, which isn't a whole lot. Since the virus attacks lungs, it would be touch and go. But, no worries....

In the meantime, we are staying quarantined and isolated. I do try to get carry out food in order to support the local businesses and their employees. I know that puts us a slightly higher risk, but its more important to keep the economy going as much as possible.

Hope all of you are safe and healthy!

Oh, BTW, if you haven't looked at the wegs map lately, you might want to do so. It really has a bunch of stick pins in it. Also, be sure and let know of people who need candles.
https://www.zeemaps.com/map?group=242717

Lea

04-05-2020, 03:06 PM

I use Budesonide in my nasal rinse. It was REALLY painful the first few times. It felt like brain freeze followed by a stinging and itchiness just under my scalp. It does seem to help a little and those side effects only happened the first few times.

Keep safe and well.[/QUOTE]
Did you read the instructions on how to use Budesonide as a nasal rinse? You need to make a proper mix of distilled water, a saline little packet (sinus rinse) and budesonide. It is in the instructions that you receive when you get your budesonide. Sometimes I forget to add the saline packet, and like you said, when you put it inside your nose it hurts a lot. So when I prepare the mix, I make sure I include everything.

gilders

04-05-2020, 09:19 PM

I use Budesonide in my nasal rinse. It was REALLY painful the first few times. It felt like brain freeze followed by a stinging and itchiness just under my scalp. It does seem to help a little and those side effects only happened the first few times.

Keep safe and well.
Did you read the instructions on how to use Budesonide as a nasal rinse? You need to make a proper mix of distilled water, a saline little packet (sinus rinse) and budesonide. It is in the instructions that you receive when you get your budesonide. Sometimes I forget to add the saline packet, and like you said, when you put it inside your nose it hurts a lot. So when I prepare the mix, I make sure I include everything.[/QUOTE]

Thanks for taking the time to check I was adding the saline packet. I have used NeilMed packets each time, so not sure why it hurt so much the first few times, but I've been fine with it the last couple of months.

gilders

04-05-2020, 09:25 PM

Oh, BTW, if you haven't looked at the wegs map lately, you might want to do so. It really has a bunch of stick pins in it. Also, be sure and let know of people who need candles.
https://www.zeemaps.com/map?group=242717

The link in your message works, but the yellow banner at the top of the page hasn't worked for a long time (at least for me).

vdub

04-06-2020, 05:52 AM

yellow banner at the top of the page
I'm not sure which one you are talking about. On what page? How do you get to it?
When you click on it, what url does it take you to or does it just do nothing?

chrisTIn@

04-07-2020, 03:18 AM

Hi Vdub,
Like Gilders, I see a yellow banner on top of the home page, and every other page, but only when I'm not logged in.
The banner contains links to FAQ's and makes it possible to register.
I didn't check the register-button, but the FAQ's-link seems to be working ok on my computer.

chrisTIn@

04-07-2020, 03:34 AM

Did any of you see the so-called TED-talk of Bill Gates in 2015?
It was made after the world faced an outbreak of Ebola.

https://www.ted.com/talks/bill_gates_the_next_outbreak_we_re_not_ready?utm_c ampaign=tedspread&utm_medium=referral&utm_source=tedcomshare

vdub

04-07-2020, 03:34 AM

Thanks, Christin. I think the problem is on Gilders side, but hard to say. I'm glad its working for you. What browser are each of you using and do you have an ad blocker or have you turned off pop ups. Actually, now that I think about it, people must be finding the map, because it has received so many new hits.

Maybe some others can tell us if they have the same problem or verify that it does work, but we should probably make a new thread. I don't want to hijack this thread -- it should stay on topic about COVID-19. If anyone answers to the map yellow banner problem, how about starting a new thread? But its not a huge issue either way, so no worries.... Stay healthy everyone! :-)

vdub

04-07-2020, 07:36 AM

I guess the World Health Org should have listened to Bill. I have always felt that the WHO did little good for the world and wasn't more than a puppet organization. It really is a world issue and not one than can be or should be solved by one country. However, the US can and I hope do open their eyes a bit and start processes to help with future pandemics. Imagine if this had been biological warfare? We are totally unprepared. I wonder if South Korea did so amazingly well because they were afraid of N. Korea using biological warfare and were prepared for such an event?

chrisTIn@

04-07-2020, 08:49 AM

South-Korea, as well as Taiwan seem to have learned from the SARS-outbreak in 2002 and 2003. That is what several news-articles are stating.
In our country a professor at the Univeristy of Leiden said: 'We could have had medication against corona-virusses already, if we hadn't fallen asleep after SARS.

drz

04-07-2020, 09:16 AM

I just read that both countries are experiencing a rebound in number of cases from people returning or visiting their countries again. Still low numbers but a disturbing trend since there are big fears about what happens when the shut downs and physical distancing end.

John S

04-07-2020, 10:17 AM

It took 12 months to get a SARS vaccine.

drz

04-07-2020, 12:29 PM

chrisTIn@

04-07-2020, 11:03 PM

I sure hope scientists around the world will work together to develope a vaccine against SARS COV-2, the virus that causes Covid-19.
And that in the future, we will never forget how vulnerable we are for contagious diseases, which can easily be spread in our 'globalized' world, where most people travel more than ever before.

We, as GPA/Wegs-patiënts, can only be vaccinated by a 'dead' vaccin, I think?
I guess it will be the same as with the flu-vaccination. It cannot be a 'live'-vaccin, when you are immune-compromised.

annekat

04-08-2020, 07:30 AM

.
Anne, are you still making pottery? Has this had an effect on your business?
Hi, Masha, and thanks for asking. Yes, the virus has had a huge effect, completely out of my control. After 2.5 months of the expected slow business on Saturdays at the Olympia Farmers Market, I was looking forward to the opening of regular Market season in April, 4 days a week, though I only sell on two. Then on March 17 came notification that crafters, with the exception of soap makers, cannot sell at the Market until further notice. It's been scaled back in other ways, too; no entertainment, takeout only from the food concessions, no picnic tables, etc. So plenty of social distancing mapped out for the essential farmers and other food products. I expect this to last until at least mid-June, well into peak season.
So, I'm pretty down in the dumps over this, but trying to stay positive as we vendors are banding together for support and ideas for selling online and such. I have a lot of other things to work on in my life and around my house, so have put pottery on the back burner for the last 3 weeks. Need to get back into it soon, though, in preparation for future sales taking place. It will all work out somehow.
Anne

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Masha

04-08-2020, 07:31 AM

So, what do we Weggies do until a vaccine comes out? From the sounds of it that could be a year away, if then. A doctor in Santa Clara, CA said that eventually this virus will hit all of us.
At some point we must see our doctors, have our blood work and infusions. And then there are those of you still working.
How are you all planning to getting back to the new normal? I don’t plan on putting myself in bad crowded situations, but I am not comfortable with that being enough.
Please share your thoughts with me. I am already beginning to worry about getting the necessary medical treatments we require.
Rode my bike to the liquor store. Bought a bottle of Wild Turkey. Put it in the basket. Then thought if I fell off my bike it would break. So I drank it in the parking lot. Good thing I did, because I fell off my bike seven times on the way home. Just kidding.
I am not bored staying home. Always things to do. Just wondering why one bag of rice had 7458 grains and another had 7,329. Just kidding again.
Masha

annekat

04-08-2020, 01:22 PM

Good jokes, Masha. We need a lot of humor right now. You had me going for a minute about the bike and the Wild Turkey.
I wonder the same things you do. Seems all we can do is play it by ear, one day at a time. I hadn't heard what the California doctor said that you mentioned. That is sobering. I have enormous respect for Dr. Fauci, and if he says that, I will probably take it pretty seriously. But this is all so new, even the best docs don't know for sure what is likely to happen. Hang in there, wishing you and your husband the very best.

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Masha

04-09-2020, 10:27 AM

WOW! It is 7:25 here and Dr. Birx just mentioned ‘vasculitis ‘. She said Dr. Fauci started the Wegeners study. Did you hear me screaming?

annekat

04-09-2020, 11:26 AM

WOW! It is 7:25 here and Dr. Birx just mentioned ‘vasculitis ‘. She said Dr. Fauci started the Wegeners study. Did you hear me screaming?Yes, I felt you screaming. I have known about this for awhile and consider him a lifesaver for those of us diagnosed before 2011, when Rituxin became approved and available for use. He and an associate pioneered the use of Cytoxan along with prednisone to treat Weggies and greatly extend our projected lifespans. Before that, we were expected to live no more than 5 years after diagnosis. I was dx'ed on the cusp, in early 2011, and I got Cytoxan. It's an ugly drug but not as bad as living only 5 years. I'm glad I got it, it worked fast, I've been on methotrexate ever since, and I don't want to go through the hassle of RTX if I can possibly help it. Look him up on Wikipedia, I think our disease is mentioned. It's very cool that Dr. Birx mentioned vasculitis. I wasn't going to watch today but now I will catch the recap.

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John S

04-09-2020, 12:48 PM

AS long as Trump doesn't get Americans to hoard Rituxin

Pete

04-09-2020, 01:20 PM

AS long as Trump doesn't get Americans to hoard Rituxin

It’s too pricey to hoard at upwards of $20,000 per dose...

chrisTIn@

04-09-2020, 11:44 PM

How are you all planning to getting back to the new normal?

It is hard to say what the new normal will be. We 'l have to wait and see for a while, I guess.
In Europe the number of new Covid-19 cases is decreasing, but it is apparantly too early to change the rules for society.
I just read today that keeping a distance of about six feet is n't enough when you are walking, running or riding a bike.
Investigators of European university's say that salvia-droplets that spread when someone coughs can travel a long way.
So a distance of 5 meters or three miles would be better when walking, and for biking or running even more! :ohmy:

richard052018

04-10-2020, 02:08 AM

It’s too pricey to hoard at upwards of $20,000 per dose...

Pete, not to go off topic (although we'd all love to get away from the Wu Flu, even for a second): have you been keeping track of the RTX biosimilars? Apparently Ruxience got FDA Approval for GPA, but not RA. Interesting development. Apparently there is a another biosimilar called Truxima that cratered EU sales of RTX. I guess that's why Genetech agreed to cover all of my out of pocket RTX costs (those not covered by insurance): they want to get all they can from the RTX golden goose before the generics crash the North American market.

Have you're good pals at the Cleveland Clinic explored the usage of any of these biosimilars?

Friends: Have any of our Weggies in the EU received a Truxima infusion?

https://www.biospace.com/article/fda-approves-pfizer-s-biosimilar-to-genentech-and-biogen-s-rituxan/

Pete

04-10-2020, 03:54 AM

I'm not due for another dose of rtx until September/October. I'll ask about the biosimilars (and other possibilities) then.

me2

04-10-2020, 04:48 AM

annekat

04-10-2020, 05:10 AM

Good to hear from you, Kirk. Not even to the grocery store with mask and other precautions? I guess not. I'm sorry you are so vulnerable.

I have a bunch of N95 masks. They are a few years old but still seem OK. They've been stored in a box they came in, under kitchen sink, don't seem dusty or moldy. If you wanted one I could send it by mail. Anyone else, too. Disclaimer is it's the basic kind without the vent, so glasses can fog up. Not sure if they are available in stores, also your doc's advice is good, I'm sure. But I do have about 20 of them.

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me2

04-10-2020, 07:39 AM

Hi Anne,

Thanks for the mask offer. I may later take you up on that but for now I think I'm doing ok. I DO go once a week (or longer) for food and just take extra careful care with mask and loads of sanitizer and careful procedure when I get home. I realized recently I was not being careful enough about my SHOES. Don't wanna track in some bugs. I can keep them outside.
Not perfect but we all have to find a level we are comfortable with.

I heard that the masks have an expiration date that probably refers to the rubber on them . The filter itself does not really expire. The rubber gets rated so that a health care worker doesn't have it fall apart during a procedure or something. For the average person (or below average) it probably doesn't matter much.

Weeks and weeks of isolation is really going to get tough for some folks. I feel for them. I'm fairly lucky not to have grand kids or others that might want to see me.

It will get to be more of a burden with my work as time goes on. I don't need to tell you about that- your work is VERY affected by this.

I keep thinking about how some businesses might adapt by having a drive through. If you had a road side business with drive through I think some people would use it just to help out someone trying to adapt to the quarantine. I know I myself have tried to support some businesses that I know are being hurt by this. There is a convenience store down the road from me with a gas pump. I won't use the store but I now buy gas from him from time to time. I know he is losing a lot of business in the store and a couple extra gas sales might help.

annekat

04-10-2020, 08:28 AM

Well, Kirk, if you are out and about and make it this far, I will give you a couple of masks. And I'm fine on firewood, in case you wondered. Still a bit chilly when the sun goes behind the hill.
We Market crafters have set up a private Facebook group, including farmers and staff, where we can network about how to apply for help, establishing online sales accounts, etc. Or just to air our feelings, as long as we don't get too negative, and let each other know if we need help with anything or can offer any. It's a great thing, and could also work among neighbors, friends, church groups, etc., anywhere in the country or world.
Interesting idea about a roadside stand. It would be a little weird here given the nature of my road and wildly unmaintained yard. But it is something to think about, for sure. In fact, with my circular driveway, a drive through deal could work. I'm not ready to do it, but if anyone approaches me, I can sell out the back of my SUV, where my pots are still in boxes. With social distancing, of course.
Well, I know you will keep on top of your health, and stay safe. I hope you will be able to work again in a couple of months.
Anne

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Alysia

04-11-2020, 04:13 AM

Pete, not to go off topic (although we'd all love to get away from the Wu Flu, even for a second): have you been keeping track of the RTX biosimilars? Apparently Ruxience got FDA Approval for GPA, but not RA. Interesting development. Apparently there is a another biosimilar called Truxima that cratered EU sales of RTX. I guess that's why Genetech agreed to cover all of my out of pocket RTX costs (those not covered by insurance): they want to get all they can from the RTX golden goose before the generics crash the North American market.

Have you're good pals at the Cleveland Clinic explored the usage of any of these biosimilars?

Friends: Have any of our Weggies in the EU received a Truxima infusion?

https://www.biospace.com/article/fda-approves-pfizer-s-biosimilar-to-genentech-and-biogen-s-rituxan/

I tag freakyschizogirl who got truxima. It was not good for her.

Alysia

04-11-2020, 04:26 AM

I just got off the phone with my infectious disease doctor and wanted to share a little of what I learned. I am a candidate for IVIG therapy based on my low antibodies (because of Rituxan) but she thought the risk of going in for the treatment did not out weigh the benefit- at this point. She said as the pandemic eases up it might make sense for me to get it plus, there might be available antibody therapy that has antibodies to COVID.

I also asked when I will likely be able to go out in public (as a high risk patient) . She didn't think it likely to be sooner than a couple of months - maybe longer. She didn't have a solid answer to that question. She told me several times that avoiding contact was the number one line of defense for me.

I asked about N95 mask- do I need one? She said she thought it really wasn't necessary and that she herself uses just a regular surgical mask and a face shield when doing procedures. She was having trouble finding masks even for her OWN family.

I am to continue inhaled Tobramycin therapy for lung infection that I had a few months ago as a preventive measure. I do inhalations twice a day for one month and then one month off.

I think like your dr. The risk of going to get the IV is bigger then the risk for waiting for it. At least for me, at least in Israel. The problem here is that all the health care facilities and hospitals are already infected. They didn't keep any place which is corona free zone.

We have daily update of epidemiological investigations where new corona patients were in the last 14 days. So checking in my area, all of the following places and stuff working in it were exposed to corona lately: the labs and office in my local health service, our local pharmacy, the hospital where I used to get rtx during the first years, the outpatient unit where I get rtx during the last years etc. It is just every where. So I stay at home. Taking more pred - up from 5mg to 10 mg, taking strerodex eye drops for my red eyes and doing budezonide inhalations for my coughing. It works well so far. I wish I could have done rtx at home. My dr. Agree that it is the best for me but my health service has refused to help.

freakyschizogirl

04-11-2020, 05:03 AM

I tag freakyschizogirl who got truxima. It was not good for her.

Thanks for thinking of me Alysia... I would not touch Truxima again with a ten foot barge poll. Started off two years of hell with me and I also know of two other Weggie friends who have not had great experiences with Truxima too.

drz

04-11-2020, 05:08 AM

Like many others here I have same issues. So far there are no virus cases in our local hospital and only couple confirmed in our area. So my local doctor thought the risk of coming in for my monthly pentamadine treatment was low but that might change significantly in a month or two when they expect the apex to to hit our area.

From what I read the main benefit of wearing a mask or scarf or face covering is to protect others and reduce the spread of the virus. It is apparently a very sneaky one that is far more contagious than anyone thought. Remember when it first started many experts didn't think it was likely to spread from person to person and certainly not from any objects. Recently they just confirmed some one caught Covid-19 from using a salt shaker that an infected person had used previously. Now they know it also hangs in the air for several minutes so going in an elevator that an infected person had used minutes before could be dangerous.

Steroids are often used in treating Covid-19 but don't seem to have much impact on recovery time. I wonder though if the steroids would help us avoid a relapse of GPA or impact our risk for infections.

In our area Walmart will shop groceries for you and bring them to your car and put them in so you have no contact with anyone. Another grocery store will deliver to your home. The pharmacies only have drive through service to minimize any personal contact. The eating places still open around here only have drive through service to pick up meals to go.

I read that a blood filtering service was just approved for treating Covid19. It filters out the proteins that cause inflammation. I wonder if it work much like the plasmapharesis that many of us got during treatment.

I love the creative genius that appears as people come up with new ideas. Several women engineers started modifying breast pumps to work as ventilators. Hospitals are getting masks from tattoo parlors. Hospital workers are using coffee filters inside their mask to get extra mileage out of their masks. You can still order face masks on the internet but sometimes the prices are inflated and often they are counterfeit so it might be uncertain how well they would work but they should work as well as a scarf or bandana which some people are using instead for face covering.

Recent study I saw today said 15% of people who tested negative two days in a row before discharge later tested positive a few days or weeks afterward. The questions are: Are they still contagious? Is this relapse sometimes mistaken for recurrence. In the study they were quarantined for two weeks so it was a relapse and not recurrence.

I read now they are trying to avoid using a ventilator in treatment since there seems to be a high death rate among the people who use them. Maybe they are just sicker to start with so that is why they got a ventilator but a ventilator can cause damage to the lungs. I think it can also be emotionally traumatic. I had PTSD and nightmares from the intubation and ventilator use years ago and hope to avoid it if possible.

Did anyone else have such an experience?

Masha

04-11-2020, 10:46 AM

You guys are all keeping me sane. It takes a disease like ours to know we must be extra careful. I am such a worrier. Already worrying about doctors appointments in June and July.
My Duke rheumatologist is retiring. She called in my scrips. Found a doctor here in Charlotte, apt in July. I will need more meds by then, don’t know if a new doctor will do a video appointment. See, I am already worried about July.
Thinking about that elevator thing. Endocrinologist on 7th floor. Infusion on 9th.
I’ve been putting all my energy into cooking and baking and then overeating.
Today my refrigerator said to me “What the hell do you want now?”
And then there are my dogs. Ever wonder why your dog gets so excited about a walk or a ride in the car. Today I understood how they feel-found myself barking at a squirrel.

richard052018

04-11-2020, 05:56 PM

It's terrible that a virus has crippled the world, leading to countless instances of financial ruin, suicide, and sickness/death itself from the virus itself. Without a vaccine this isn't going away on its own. We are just getting started with this.

An interesting documentary on this virus. Draw your own conclusions:

https://www.youtube.com/watch?v=XMJ0EmMfb3U

seied

04-16-2020, 12:03 PM

Everyone now is doing what most of us have been doing all along... social distance, keep hands clean, not touch anything.
In a way, it's good for us immune-suppressed when everyone around us is wearing a mask, keeping hands clean, and not touching anything.
Catching this virus could be deadly for us, but at least everyone is careful.
I will not be worried about wearing a mask from now on when I head outside.

annekat

04-16-2020, 01:38 PM

I know a couple of sewing artists who aren't currently allowed to sell at our farmers market who are making well fitted masks out of double layers of beautiful fabrics, so they are reversible. At least one of them leaves a pocket between the two layers, where a layer of interfacing may be inserted and replaced. Interfacing is a sewing accessory used for stiffening a part of a clothing item, such as a collar, to give it more body and substance. It is a synthetic mesh fabric something like a coffee filter but a bit thicker, and works well as a respiratory filter. Just an idea for people wanting to make their own masks and maybe produce them to donate or sell. The one that I know uses a filter of interfacing sells hers online for $20 or two for $35.
I forgot to mention that fabric stores are probably mostly closed, so either you'd use supplies already on hand or you'd order things online. A coffee filter could probably work as a filter, though I think interfacing would be better in the long run.

Anne

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chrisTIn@

04-17-2020, 12:10 AM

A coffee filter could probably work as a filter, though I think interfacing would be better in the long run.

Anne

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https://www.youtube.com/watch?v=I18Q_48ODBQ

In case you 're looking for a quick instruction...:wink:

Pete

04-17-2020, 01:11 AM

Slight change of subject here, but still germain...

I’m a month overdue on my routine labs. I go to one of OSU’s satellite health centers to have samples drawn. Their system involves registering at a central office (usually about a dozen registrars who verify the lab order, print labels for the sample containers, print a wristband for me, and handle any co-pay. From there, I go back to the lab, check in, wait (usually less than 10 minutes), and then see a phlebotomist to have samples drawn. Afterward, it’s out to the parking lot on on with the rest of the day’s festivities.

I was planning to go to the lab today (as was my wife who has autoimmune hepatitis), but my son suggested I call Dr Villa Forte’s office before heading out. Here is the guidance she gave me:
1. Since I feel fine, wait another month (she’s monitoring my kidney function as I have stage 3 kidney disease).
2. Call the lab directly to find out when they are less busy.
3. Wear a mask and follow social distancing protocols.
4. After leaving the lab, go straight home, disrobe, and launder those clothes in warm water (temp>77F).

Just wanted to take the opportunity to share what I learned today. Be safe and well, my friends.

seied

04-18-2020, 05:22 PM

It's nice everyone wearing a mask; makes us immunosuppressed so much safer.

It's also kind of nice to wear a mask and not stick out like I'm about to rob a bank.

I'll wear a mask from now on, even if wearing one won't remain mandatory in the future.

I've been doing this corona drill since I contracted Wegs almost 3 years ago.

I'll bet most of us have been very careful all along; it's freaky to see now *everyone* doing what we do.

Does anyone know if a member here has contracted coronavirus?

Stay safe...

Ed.

chrisTIn@

04-24-2020, 12:48 AM

Does anyone know if a member here has contracted coronavirus?

Hi Ed. I haven't heard it so far.

But I am curious to know if people who read this feel safe with the precautions they take.
Here in The Netherlands only healthcare-workers wear masks.
The so-called 'Outbreak-Management-Team' that advices our gouvernment on current healthcare issues still does not recommend wearing masks for everybody.
They think social distancing and frequent handwashing are more effective.

The numbers of new Covid-patients are declining at the moment, so the precautions seem to work.
Still everybody has to stay vigilant, because the virus is still present in society.

We have partly a lock-down. Many shops are closed, so the internet here is almost exploding by all the online shopping that goes on now.
Delivery services work overtime. They keep a safe distance when delivering a package. Often leave it at the doorstep and then take a few steps back, so there is no fysical contact.

Schools have been closed for a while, but are soon starting to re-open.
There is evidence that children have no big part in catching and transferring the virus.

drz

04-24-2020, 04:24 AM

We are transitioning here in Minnesota. Our governor opened up some outdoor recreation like golf courses and parks but most things are still closed down. Our governor just announced a plan that two of our big Health care facilities will coordinate, U of Minnesota and Mayo clinic, and increase our daily testing 10 times over our present levels. This should help yield the information necessary to start relaxing restrictions in a more safe manner. Both have developed their own testing procedures for use with their own patients but will now expand their testing to be state wide.

https://www.mprnews.org/story/2020/04/23/minnesotas-expanded-testing-plan-what-you-need-to-know

The staff in our medical facilities are wearing masks but the people I see walking by outside usually aren't. When possible medical care is done with video visits or drive thru facilities . Our local medical facility just opened a drive thru lab for lab work.

We have a low infection rate of confirmed cases in our area but our testing has also been very limited so our actual incidence is largely unknown. The estimates of infected people are probably 100 times our confirmed cases. The estimates are that our peak in cases will not happen for another month or two and any group activities will not happen till late summer or later.

Our nursing homes in town have not reported any cases so far. Two neighboring counties have reported cases and deaths in their nursing homes. My Senior Living facility is still locked down so we residents stay in our room and the staff deliver our mail and groceries and any packages to our door.

The emotional strain of restricted social contact is wearing on everyone I know. Those people living in the country with no close neighbors are able to get outside with no problems but they still have no visitors outside their household.

Many people are working from home if possible. Some people still have to go to work on a regular basis for essential services like medical care, food service, and eating places that have take out meals. Students are doing distance learning over the internet and teachers have had to learn how to do this quickly.

I am guessing things are much the same in most places but let us know how you and your area are getting along.

Pete

04-24-2020, 05:51 AM

Here in Ohio, we're in pretty good shape aside from the far right's protests about the stay at home orders. Ohio State, Cleveland Clinic, and some other hospitals are beginning to coordinate testing, but it's still way short of what's needed. Nursing homes and prisons are our biggest hot spots. Some prisoners (nonviolent offenses, elderly, at risk factors) are being released.The Governor and the ACLU are at odds about who to release and how quickly.

Yesterday, the Governor and Health Department Director allowed elective surgeries and procedures to be scheduled again. There are supposed to be more details today (probably as I'm typing this) about relaxation of the stay at home order.

Personally, I do get out and walk the hiking/biking trail that goes behind my house most days. The trail is about 10 feet wide and paved. People are generally maintaining social distancing on it. I do not wear a mask when I'm out. I figure the possibilbity of a random virus taking hold in me are very remote.

Tomorrow, I'll go out and pick up groceries via curbside pickup at the grocery store. I've tried Kroger and (tomorrow) Giant Eagle. The online shopping process is pretty clunky, and I spend about as much time shopping on line as I would if I went to the store. The two pickups I've made at Kroger were a bit disappointing as the workers bringing orders to cars wore neither masks nor gloves. We wipe down packages with clorox wipes once we get them home. So far, so good.

The difficult thing for us is lack of contact with our kids and grandkids. We facetime several times a week, and my wife, the retired teacher, is helping our youngest grandkid (5yo) with letter and number recognition as we do flashcards over facetime.

Well, it looks like it's stopped raining, so I'm going out for a stroll.

Be well, and be safe everyone!!

me2

04-24-2020, 06:20 AM

I have a decontamination tool that I use on things brought in from the 'outside' and also on my vehicle. I use an ozone generator that I ordered online. It takes a little education to learn the proper use of it but it is very easy to use and safe.

Short list of things to know - It works really well at killing virus and bacteria. The ozone is NOT ok to breath but with proper procedures this is not a problem. The gas degrades on its own over a few hours and leaves no residue. I've read that it can destroy some rubber items but I've not had that problem myself. I use it on houses for many years to destroy odors. The gas chemically bonds with pollutants.

I gave a ride to some guys in the back of my enclosed truck a few days ago and was able to decontaminate it over night with the ozone. Its not for everyone but I think it's good to know about.

Masha

04-24-2020, 10:39 AM

drz

04-24-2020, 11:25 AM

I have appreciated following each of you on our shared journey. I can relate to all of you (liked the bank robber part).
My wonderful Duke rheumatologist is retiring. She has given me enough meds until I see the new one, who is here in Charlotte. It is too difficult for me to travel to Duke and since I am starting with a new doctor, it would be easier to go close to home. This one trained at MUSC, where autoimmune is a big thing. I did not get my April infusion because of the pandemic. I will be seeing the new doctor (new to me but in practice for 15 years) in the beginning of July. I should probably take infusion in July, am torn. If I postpone longer, GPA could act up. If I go, what will I be exposing myself to? Also, I have a feeling we are going to see this virus return in the fall. I know we are supposed to be optimistic, and I don’t want to be pessimistic, just realistic. Since you all know where I am coming from, I would greatly appreciate your feedback. Also, after infusion how long are we supposed to wait to get flu vaccine? Internet has a variety of answers to this. I know these are all questions for my doctor, but your experience is valuable.
My next post will update you on the Carolinas.
Masha

Call in and discuss your concerns and they will most likely help you figure you the best way to help you get the service you need safely. Locally they have set up special hours and services, a drive through for lab work, screening of patients at all entrances, staff wearing Protective gear, and use of tele-medicine when possible to try reduce the risk of spreading the virus. They will also take steps to reduce wait time as well as limits on number of other patients you will see. Last time I went in to our walk in clinic I was only person there and they took me in right away with no wait time. Another doctor did a video visit and sent my lab orders in so I can get them at the drive thru lab so I will only see the lab tech who will have safety gear on. The clinic will also know about the numbers of virus patients in your area and the best times with fewest patients and sometimes have special times for most vulnerable patients. Good luck.

I understand your fears and concerns. I had a panic attack when I had some new symptoms and thought I had caught another case of pneumonia and I still was anxious about going to to the ER or even Walk-In clinic but was very relieved after i finally did since my treatment was easy and gave fast relief to my pain and symptoms.

annekat

04-24-2020, 04:20 PM

https://www.youtube.com/watch?v=I18Q_48ODBQ

In case you 're looking for a quick instruction...:wink:Great video! He used the Melitta style coffee filter, which I think would be better than the basket style I was visualizing. The shape fits the face and it is double thickness for more filtering, as long as one can get enough air through it. As for interfacing, it can be cut to any shape, but I think I mentioned above it might be harder to get ahold of with fabric stores being closed. Thanks for sharing!

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drz

04-24-2020, 08:38 PM

I read a recent study about the effectiveness of various types of heme made masks. Most scored very poorly for protecting the wearer but any would help reduce the spread by protecting others. The main problems were they either did not filter out much to help protect the wearer or they restricted airflow to such an extent they made it hard for wear to breathe. I believe one could find the study results with a google search.

Great video! He used the Melitta style coffee filter, which I think would be better than the basket style I was visualizing. The shape fits the face and it is double thickness for more filtering, as long as one can get enough air through it. As for interfacing, it can be cut to any shape, but I think I mentioned above it might be harder to get ahold of with fabric stores being closed. Thanks for sharing!

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John S

04-24-2020, 10:10 PM

The best filter is “STAY HOME”
we have been sheltering for 7 weeks now.

John S

04-25-2020, 01:22 AM

2662
I would rather not drink Lysol

drz

04-25-2020, 11:00 AM

Officially named SARS-CoV-2, the novel coronavirus first identified by scientists in December 2019 has a different name than the illness it causes, which is known as COVID-19.

Masha

05-04-2020, 01:03 PM

Like most of you, I am staying home. The Carolinas are starting to open. In South, they have opened retail and restaurants for outdoor dining. In North, some businesses have opened. None of these openings will have any effect on me. Because of GPA, we are all high risk, add to that the other things our medications cause (steroids-diabetes) and in my case age.
Crazy things happen during these crazy times. Our fire alarms went off at 1:30 am. Removing the boxes was not enough, because it is the wiring in the walls that make the treacherous sound. Add two dogs and my tinnitus to that and it is grinding. By the next day we called the maker of the alarms. The culprit was one of our carbon monoxide units, which are plug ins. Sounds crazy, but once those were removed it stopped.
Many of you sing the praises of Vegemite. Never found it in my grocery stores, but now that I am on line food shopping I came across it, so I ordered it. Haven’t tried it yet, will let you know.
Of all times, our washer started to leak. The W&D were old, but AGAIN, of all times to replace them! We were able to do this over the phone. The delivery people were very cautious, masks and gloves. They had to go in and out of many homes at this frightening time. I hid behind closed doors and my husband stayed 10 feet away, so that’s done.
You know how we get the swollen joints, now my ankle is acting up. Doesn’t surprise me. This usually happens before infusion, scheduled for a few weeks ago, but cancelled. I put an ankle brace on and kept it elevated. Swelling has gone down and not as painful. What a time for my rheumatologist to retire, but I am scheduled to see new one at the beginning of July. Like it or not I must make it to that appointment since I am not yet an established patient. My other doctors are being set up for virtual appointments.
I keep cooking and baking. Today, my husband hung little white Christmas lights around our house. It’s a small thing that makes a big difference and adds warmth and comfort. Tomorrow I am placing a grocery order for dairy and meat. I don’t know what to expect, because many stores have just announced only three packages of meat per customer. But I have plenty of beans and tuna as a backup. Vegemite, here I come.
I am reminded every day on TV of not only the people who have lost their livelihood, but those who have lost their lives. My heart breaks for these people with horrible challenges.
I pray you are all well and have faced no bigger problems than ringing fire alarms and broken washers.
Masha

woz

05-05-2020, 10:29 PM

Vegemite will fix most ailments down here in Australia, I hope it has the same effect in the US...

Regards Woz...

gilders

05-05-2020, 10:45 PM

What ever Vegemite can do, Marmite can do better!!! :flapper:

John S

05-06-2020, 02:51 AM

I've been seeing GOP advertisements asking people to protest the economy being closed.
Before the country reopens there needs to be an effective treatment protocol and a vaccine.
If they reopen the country, 10's of thousands of people will be murdered by the virus.
It's abortion for people that are in their 700th trimester. or that have pre-existing conditions.

Pete

05-09-2020, 01:36 AM

My wife and I went to the OSU satellite center in Upper Arlington yesterday for labs. She has autoimmune hepatitis and was a month overdue for labs. I was two months overdue for mine.

When we arrived, we each took a shot of hand sanitizer as we entered the building. We were both wearing masks, but my wife was asked to take off her cloth mask and put on a paper surgical mask. (I was already wearing a paper mask.) They asked the usual triage questions and took our temperatures. From there, we went to central registration. The cubicles were set up for social distancing with every other one vacant. We were given our wristbands and sample stickers. Then they routed us to the lab in such a way as to avoid people entering registration. When we got to the lab, the waiting room chairs were socially distanced. The phlebotomists sanitized the space between patients. After giving samples, we left and my wife gave me more hand sanitizer before I got into the car. We felt safe the entire time. We went at about 9:00 AM when the lab is less busy.

Our results came in yesterday afternoon. Her’s were fine. Mine showed some possible evidence of (more) kidney issues, so I sent a note to Dr Villa Forte. We both feel fine.

Dirty Don

05-09-2020, 02:06 AM

Last trip to Mayo was exactly the same: masks, temps, questions, directed and redirected, available sanitizers, it all went well & felt safe. Maybe better than usual! Oh, all the lines and checking in is being done OUTSIDE! It's nice and warm here, kills viruses!! LOL, just laughing in the face of anxiety! All be healthy!

gilders

05-10-2020, 09:41 PM

Our results came in yesterday afternoon. Her’s were fine. Mine showed some possible evidence of (more) kidney issues, so I sent a note to Dr Villa Forte. We both feel fine.

Hope your kidney issues are too concerning!

annekat

05-11-2020, 05:05 AM

Looks like someone re-registered me, as I was having trouble with that. Thank you. Now I can like and reply to people's posts. It will take some time to get caught up. Have been letting myself get bogged down with Facebook stuff, arguing against conspiracy theories, etc. A fruitless endeavor that becomes toxic, so I am ignoring new posts in that vein.

Masha, I always enjoy your posts. I'm sorry about your issues with appliances, etc. Same here, and since I live alone, there is more of a tendency to let things slide. Same with the cooking and baking, more fun with another person there to appreciate it. I would be making bread but still having trouble getting flour. There's some out there, but is bleached white. I always buy unbleached. The small amount of good flour I've seen, including whole wheat, is at a small convenience store and too expensive. Haven't looked everywhere, and good bread is available reasonably.
I love your husband's idea of the white Christmas lights.
Good news on the financial front ; I am collecting the special unemployment for self-employed persons, provided for in the CARES act, and it is making a big difference. I am grateful. I don't know when I will be allowed to sell my pottery at the farmers market again. I'm not even sure I want to do it anymore. But I would need to find something to take its place.
Hang in there, everyone.

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John S

06-01-2020, 01:00 AM

Since I' was diagnosed I've always driven from Chicago to Cleveland to see Dr. Villa-Forte and get my Rituxin treatment. I stay at the Intercontinental Suites and enjoy the city a bit. My next treatment should be in September but I'm not sure I want to do the three day trip this time. Has anyone got experience getting treated at the Loyola Hospital in Maywood?

drz

06-10-2020, 09:52 PM

How many did their survey on vasculitis and coronavirus and joined for support? It does seem strange to me that now when I am hunkering down for self protection and need more electronic communication to cope with the isolation that there seems to be very little activity on this forum. Since the pandemic seems world wide, I can't be the only one who is more physically isolated in a community where many or most activities are shut down or limited? And trying to stay safe and stay sane.

"Get Free Coronavirus Support for Chronic Illness Patients.
Join the Global Healthy Living Foundation’s free COVID-19 Support Program for chronic illness patients and their families. We will be providing updated information, community support, and other resources tailored specifically to your health and safety. Join now (https://www.ghlf.org/coronavirus-patient-support/)."
I read most of their advice which seemed very good and accurate to me.

annekat

06-11-2020, 05:35 AM

Thanks, drz. I don't remember seeing info about this before, so have checked it out and gone ahead and registered. I have perhaps been less socially isolated than you, but was already something of a hermit before all this started. My state is starting to open up but I'm very concerned about the future, with the protests nationwide and new cases starting to escalate again. All we can do is protect ourselves and loved ones and take it one day at a time.

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Masha

06-11-2020, 10:31 AM

Grab a cuppa or a mugofa and I’ll update you on my latest. First, John, I hear you about not wanting to travel to Cleveland. We used to make my Duke trip an overnight outing, then the pandemic hit. My Duke doctor was retiring, so the choice to go local was a no brainer. And drz, yes where have all the people gone? I would love to hear from some of the infrequent visitors as well as the new people we welcome and support.
Heard from Duke, they wanted me to be part of a research study. No thanks, I am staying home.
I am the official barber, hairdresser and dog groomer in this house. The two 5 lb. poodles prove to be more of a challenge than giving myself or my husband a cut.
The numbers of covid-19 have gone up in both N &S Carolina. I think people interpreted going back to work as an all clear. I live in an over 55 community (mostly 70’s) and you would think the teacher hollered recess with the way they are running around. If you are on this site and reading this then YOU know the grim reaper is not a figment of our imagination.
All three of my doctors, part of the same group, called in my blood orders so I would only have to go to the lab once. I was most impressed with the new rheumatologist. My appointment with her isn’t for another three weeks, but her nurse called to tell me the doctor just finished reading all of my Duke records and sent in the blood work orders. Like most of you, many tests and they are the same I got from Duke, so I am feeling pretty good about her being thorough. So far, had the virtual visit with the internist, bone scan good, A1C down from 9 to 7, and cholesterol at 90. Yippee!
Going for lab work was a real trip. A table set up outside, took temps, those without masks or homemade ones were given surgical. The place was packed. But I was prepared. Since I knew they wanted a urine test, figured I would simplify that and do it at home, place it in a tightly sealed jar and plastic bag in my purse. I wore a face mask, my new face SHIELD and gloves. It was early in the am, no food and a bit weak. But I climbed the steps, didn’t want the elevator and would not touch handrail. Hand in my paper work, only to realize I left one sheet in the car. Now, I have got to head down the steps, I am woozy and trying to balance the purse-remember the contents! I am all over the place. Who remembers the old I Love Lucy show, when she was going down the steps with a headdress on? The good thing about being old, onlookers could attribute it to my age, especially when I was laughing at myself. But to tell you the truth, I have always been a bit off balance. And speaking of balance I managed to hold the purse steady, safe and sound.
Be careful and be well.
Masha

John S

06-11-2020, 09:03 PM

I am taking the steps to get my next infusion locally. A Doctor at Loyola said that she will follow Dr. Villa Forte protocol and dosage plan. I’ll also start getting my monthly labs done again.
‘During quarantine I have gotten a lot more dependent on my cat, watching animals and people out the picture window, CNN and Zoom. I’m involved in four separate Zoom music groups where people take turns playing and singing songs.

Pete

06-17-2020, 03:18 AM

A glucocorticoid seems to be effective at mitigating the effects of coronavirus. I wonder if prednisone would be as effective?

https://apnews.com/89d963958b042cc921e64ab3eff5a74d

richard052018

06-17-2020, 01:53 PM

Hey guys: just wanted to give you an update on Rituxan Infusions in the COVID-19 Universe (just completed my infusion today)

After the recommendation of the incomparable Dr. Villa Forte of the Cleveland Clinic, I opted to go forward with my June RTX infusion.

A few interesting notes from my Rheumy office (I think they have handled this very well):

--Most Wellness checks have moved to virtual visits. The lack of bodies in the office has resulted in a surplus of available rooms.

--In lieu of piling 4-6 people in the infusion room, the office decided to take 4 patient examination rooms and convert them into single occupant infusion rooms. Brilliant, I thought: I wish this was advertised to patients up front as this would have removed much anxiety.

--My room even had its own sink so I could wash my hands as much as I desired (only 4 times, that I'll admit, I wouldn't want you to think I was off my rocker)

--They recommended that once the infusion nurse had left the room I could take my mask off. That n95 didn't leave my face with the exception of woofing down a couple packs of peanut butter crackers

--Labs were kinda the usual, in a separate lab room: 1 patient in lab room at a time. Everyone had masks and gloves: can't ask for much more. Am I the only one being tested for TB every infusion? Kinda weird (4 tubes for test to boot)

--Cheat meal (I've been dieting, and I'm back too Stronglifts 5x5, my go to workout to ease back into the weights): Bojangles Drive Thru Fried Chicken. Chicken was good, fries were terrible. I've gotten used to home cooked meals the last 3 months and I don't think I can go back to the drive thru.

All in all a positive experience. Of course I will be checking my temperature/SPO2 10 times a day the next few weeks, I'm hoping for the best.

Just want to encourage the rest of this community to check with your infusion center on the accommodations being used and see if they offer up what I described as the "Bellagio" treatment I received today.

Hope all is well. Be safe. We can get through this: we live the game plan that the rest of the world is trying to emulate.

annekat

06-17-2020, 08:28 PM

[QUOTE=Pete;116362]A glucocorticoid seems to be effective at mitigating the effects of coronavirus. I wonder if prednisone would be as effective?

https://apnews.com/89d963958b042cc921e64ab3eff5a74d[/QUOTE Pete, I skimmed the entire article and it was implied that prednisolone, which I think is pretty much prednisone, and hydrocortisone, could be expected to do just as well. But it said the treatment had only been shown to help a percentage of severely ill patients, and not those with milder symptoms. Still, an interesting development.

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Pete

06-17-2020, 10:48 PM

richard052018

Where did you get your mosr recent infusion? I’m going to Cleveland in September.

Alysia

06-18-2020, 05:08 AM

Hello, my friends,

I've missed you and I love you.

Sorry for not writing earlier. I've being too sick with red bloody eyes so it was not easy to be in front of the screen. And also my mind is too distracted most of the time. I use it for my work from home, and after it I just feel exhausted. Too much news and being worried don't help.

I got my rtx on May 7. During the last 2 days I've had no coughing for the first time in months. So rtx has started to work. Praise The Lord. My eyes are less red then before although they are still red and irritating. I was on 20mg pred for months and tapering, I am now on 10mg. My wg dr. Added a new med which I started 2 weeks ago: Leflunomide or Arava. Anyone here is on it too ? So far I don't feel anything which I guess is good.

They have almost won the battle against the virus in Israel and reached a point when there were around 100 cases a week. At that time I went for my rtx. But then the gov. started to open work places, schools (most irresponsible opening ! To expose kids to the virus, just makes me mad !!) And others, and now there are more cases every day, already around 300 cases yesterday. And they dont stop it and just continue to open ! I am so angry and disgusted.

We stay at home, me and my kids who learn and work from home, and I visit my old parents every day. They are also at home only. And we have our cats so we are like Noah in the Ark, but with cats.

At least I was able to get my rtx and my wg is calming down.

But really, Israel needs many prayers. Will you, please pray for my country ? If it continues like that, in short time it will be a disaster, not to mention stupid politics which will lead us to a war.

Lord have mercy.

Pete

06-18-2020, 09:04 AM

Glad to hear you’re on the mend. Hope it continues.

It seems Israel’s politics are as messed up as ours in the USA...

annekat

06-21-2020, 03:02 PM

Alysia, I put a Like because I'm glad to hear from you and that you got your RTX and it's starting to help. The same thing is happening in our country except I don't think any schools have opened. I wish all our people who think this is a hoax and they can do whatever they want would get some education from finding out how things turned worse again in your country after opening too fast. Many Americans are very stubborn, and they will live to regret it. I like the image of you in a Noah's ark, except with cats! And yes, I will pray for your country!

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Keith

06-28-2020, 11:29 PM

It’s crazy how the mask issue is so political. The economy has a large influence on election outcome, so too many folks are in denial about seriousness of COVID and benefit of wearing masks. Ironically, wearing masks would help their cause as it would help the economy.

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Masha

07-04-2020, 11:11 AM

I got to meet my new rheumatologist yesterday. Hooray. I really like her. Sorry to see my Duke doctor retire, but with the virus threat the timing to go locally couldn’t have been better. New doctor is very experienced in Wegeners and has a ton of patients with it. After being on this site with this disease I know when someone knows what they are talking about. She does.
Now here is the best part, ALL of my blood work came back in the normal range. This is the first time C-Anca came back negative! Yippee! My husband said my blood work was good because I am cooking all of our food and we aren’t eating out. Huh!
I will be getting my long overdue infusion in about a week. The infusion center where I will go is using three rooms with three patients each. I will be six feet away from the two other patients with the nurse outside the room. Temps are taken before entering the building.
Masks are now mandatory in NC. Bars and gyms remain closed. And now restaurants have to close earlier because they were staying open late and becoming bars. Some guy was in a store and got arrested (without incident) for not wearing his mask. Even though the numbers who test positive are up, the deaths are not. More tests are being done and we had a lot of people running around in huge parties without masks.
NC Governor says he needs a few more weeks to decide if he is reopening schools.
SC has numbers up, but the state is reopening faster.
Our household remains vigilant. We understand we are at high risk. But now that I am feeling better and in remission, I find myself in lockdown!

Pete

07-04-2020, 12:56 PM

I had to go to the ER this past Sunday evening. I had fallen off a low step stool on Friday and glanced off a drain pipe on the way down. I think I bruised the ribs on my left side. Saturday and most of Sunday, I controlled the pain pretty well with tylenol. However, Sunday evening the pain ratcheted up as did my BP and pulse. I was also having difficulty breathing. I called 911 and was transported to OSU Medical Center.

The EMTs were both wearing masks and gloves. The inside of the ambulance was spotless. Upon arrival at OSU, I was immediately taken to an examining room in the ER. It had been sanitized since its last use. I never saw anyone’s full face.

I was given Zofran (for nausea) and dilaudid (for pain). I had several blood tests, a chest x-ray, and a CT scan. Fortunately, the imaging showed no injury from the fall, but the scan showed some anomalies in my kidneys (cystic foci). I have stage 3 kidney disease, but this is a new wrinkle. I had a good follow-up with my PCP on Tuesday, and he has referred me to a nephrologist.

From the time the EMTs arrived at my home until I returned was about four hours. I felt safe and was glad to see all COVID-19 protocols followed.

I hope all this is in the rear view mirror so we can go to the beach in a couple weeks.

richard052018

07-06-2020, 12:04 PM

Alysia: I hope from your last post that the RTX is doing its job. It is understandable that the instability of this world is making you anxious, but if I could give you the slightest bit of advice, it would be to focus your attentions on the micro (your children/parents/cats/home/faith), and spend much, much less energy on the macro (geopolitics, sensationalist media headlines). I'm sure you are thinking, "tough talk from someone who isn't in the Middle East", but we have our own madness in America these days, sadly. Anyhow, I'm finding that the less time I spend looking at the news, the better I feel. I approach the headlines these days thinking, "How on earth am I going to stop a nuclear war (or latest crazy headline) if I can't even make my bed or pick my dirty clothes off the bedroom floor and put them in the hamper." It adds perspective.

Pete: sorry to hear about your fall. If it makes you feel any better, I googled your kidney condition (kidney cysts) and Dr. Google says they are fairly common as we age and are usually harmless (a stark contrast from the usual diagnosis of Dr. Google, which is cancer and death, and more death). I know you're kidney labs have been up & down. Have you tried going off the Bactrim for 60 days and re-test? Dropped my creatinine considerably when I did.

Masha: I am happy to hear your labs went well. I get worked up over my labs but the thing I've discovered in my 2 years is the way I'm feeling is often the best indicator with this disease. When I "feel good", my inflammation numbers are usually very low. When I "feel like crap", they are often elevated. The big thing I think that's helped me out is 1, the home cooking, and 2, lots of exercise this summer. I feel better than I have in a long time, and these days, I don't take that for granted anymore.

Everyone: Keep up the good fight: we will get through this!!

Pete

07-06-2020, 12:22 PM

Pete: sorry to hear about your fall. If it makes you feel any better, I googled your kidney condition (kidney cysts) and Dr. Google says they are fairly common as we age and are usually harmless (a stark contrast from the usual diagnosis of Dr. Google, which is cancer and death, and more death). I know you're kidney labs have been up & down. Have you tried going off the Bactrim for 60 days and retest?
richard052018

The ER doc told me to follow up with my PCP. We discussed kidney findings. Scarring and thinning are wegs related and likely causing my elevated creatinine and depressed eGFR. Cysts run in my family (I think my Dad had them) and are likely benign. Also checked with Dr Villa Forte, and she concurs. We’ll continue to monitor via labs. Most of the time I feel good. Ribs are still a little sore, but getting better.

drz

07-10-2020, 04:40 AM

They have survey on what is important to us in their research trials for a vaccine.

https://delphimanager.liv.ac.uk/aavresponse/Delphi

(https://delphimanager.liv.ac.uk/aavresponse/Delphi)

New Research Project Open:
AAV Response Criteria Delphi

We need patients with granulomatosis with polyangiitis (GPA, formerly called Wegener’s) or microscopic polyangiitis (MPA) to complete this survey.

Help us develop a tool for determining the efficacy of treatments for patients with vasculitis!

We are developing a research questionnaire to create better response criteria for ANCA-associated vasculitis for use in clinical studies/trials.

What is response criteria and why does it matter?

Response Criteria
A system for determining whether a patient has improved or not improved after starting a new treatment.

Response Criteria to Improve Treatment Testing
Since vasculitis is a complicated disease, such criteria may need to involve several different measurements of various features of the disease to decide if a patient is better, worse, or the same after treatment. Developing good criteria will improve the testing of treatments for vasculitis in the future. Learn More (http://r20.rs6.net/tn.jsp?f=0010WATBWS2hrjhXmhMXbNiX46UEnGmnYEjvGebv7 Qh2h3luJ88dKeLuzsaS7JwQIpflNa4DGd-xxgQAASVAzUR8gywmDVOq5yH3PFIZwsEMhZm2_4nXooPC7Cua7 eZuBE14jXOvVmMtSMv3z2WzxOq8tsL1TlngIWxgn75wkXMWb6x q8392V0o7A==&c=9KWjZReADrGWNIDwEL47Fky8F7Ae39qDPCNp9botaCrwjrCu XihGDA==&ch=Lfg2ukuoPmZRt0xow2epbeydiH-xmsOCLN1j2oOit7V2fCBpoEJsDw==)

Goal of the Study

The overarching goal of this study is to develop response criteria for AAV for use in clinical trials.

What is Involved

This is an online research questionnaire.
There will be 4 rounds of this questionnaire.
Your name may be linked to your response for the purpose of determining who has completed the survey but your name will not be linked to any specific responses.

https://files.constantcontact.com/b532f4f7001/61020f9f-b8cb-42bd-94e7-9024962e40c2.png (http://r20.rs6.net/tn.jsp?f=0010WATBWS2hrjhXmhMXbNiX46UEnGmnYEjvGebv7 Qh2h3luJ88dKeLuzsaS7JwQIpfz59vWx87WLEHqHtE9Nj3x4so g_l648ZgelMJbd08jaNXUifvB6X8HG6wvLqRliAbwcP0cXMtLM Q5aiyWc6OFYi11K08hsE2ctTVOtN7MGeyIEOIVB0heCw==&c=9KWjZReADrGWNIDwEL47Fky8F7Ae39qDPCNp9botaCrwjrCu XihGDA==&ch=Lfg2ukuoPmZRt0xow2epbeydiH-xmsOCLN1j2oOit7V2fCBpoEJsDw==)

Participate in the project today!
Your participation will help develop better criteria to improve testing of treatments for vasculitis in the future.

Questions?
If you have any questions or concerns,
please contact our study team:
Dr. Kaitlin Quinn, ACR Research Fellow and lead investigator
[email protected].
Kalen Young, Director of Research Affairs VPPRN
[email protected]

(https://delphimanager.liv.ac.uk/aavresponse/Delphi)

John S

12-03-2020, 11:45 PM

I spoke with Dr Alexandria VillaForte yesterday morning. She told me that all of the vaccines that are being considered in the US are OK for Rituximab users. She did say that if I’m to be vaccinated it should be at least a couple of weeks before an infusion.
My next infusion is scheduled for late February. I’ll be watching the roll out of vaccines and possibly delaying my next infusion.

Susan B

12-11-2020, 05:17 PM

Thanks for the info! I just responded to the vaccine thread hoping for information like this. My workplace will begin vaccinating next week and I really want to get the vaccine if possible.

John S

12-11-2020, 11:59 PM

I saw a new report yesterday.
“...However, these vaccines won’t be approved initially for use in people who are immunocompromised. This group, though, could still benefit from widespread coronavirus vaccination.“We will eventually be able to offer protection to [immunosuppressed people], either through direct vaccination or by indirectly protecting them through herd immunity,”

vdub

12-12-2020, 03:32 AM

I'm in an odd situation where I live in one state (WA) and my primary doctor is in another state (ID). So, no one is really sure who's rules or who's vaccine I will use. Supposedly, I'm on the top of the list with my primary to get the vaccine, but that was before I saw on the news that the phizer vaccine wouldn't be administered to immune compromised people. Wegner's is just the beginning of my problems. I have several other diseases on top of Weg's. It will be interesting to see if/when I get a vaccine at all. I'm hoping, tho.

Pete

12-13-2020, 01:44 AM

A little more info regarding JohnS conversation with Dr Villa Forte. She called me at about 7:00 last night. So far, the vaccines are OK for us weggies. The trick is getting the shots timed around rtx treatments.

I have been getting an annual dose of 1000 mg of rtx usually in September-October. I have a new wrinkle in that my insurance is not approving this treatment any longer. They will approve two 500 mg doses spaced six months apart. I’m scheduled for my next treatment in March. If I can get both COVID shots before March 1 (unlikely), I’ll be OK for rtx as scheduled. If not, I’ll have to wait six months after rtx before getting the COVID shots.

Fortunately, my last 1000 mg dose should see me through until autumn 2021. Our plan for now is for me to get a B-cell test in February. If that looks good, I’ll postpone the March rtx and get the COVID shots at my earliest opportunity, then wait six months for the next rtx.

BTW, Dr Villa Forte says she has 139 weggies on rtx, and she’s going to call each of us. This is but one of the reasons why I think she’s a great doctor!

Masha

12-13-2020, 06:24 AM

Pete,
I have Plan F, a supplement for United Healthcare. I get 1000 mg twice a year. Are they cutting back across the board. The supplement is to pay for what plan B does not pay.

This should make you feel good. I handed my husband my IPad to read what you wrote. When he handed it back he said, “that guy doesn’t look old enough to be on Medicare.”

gilders

12-13-2020, 06:43 AM

Pete just read your earlier post about your fall. Hope you're doing well with pain and the kidneys cysts are just the "getting old" variety and nothing sinister.
Thanks for update regarding what Dr Villa Forte told you about Covid-19 vaccines. It's going to be very tricky for me. Being a transplant patient I take anti-rejections drugs multiple times every day, so I'll never be able to hit a sweet spot where I'm not quite as Immunosuppressed.
Even with some improved knowledge and treatments since the start of this year, recent UK figures show that 1 in 4 kidney transplant patients die from COVID-19 if infected. With all my other conditions adding to the risk it's quite concerning.

Glad to hear your hospital taking good precautions. I'm due a Oesophago-gastroduodenoscopy the Monday before Christmas. I need to have a COVID swab test 3 days before, so it looks like my hospital is also taking good precautions too.

Pete

12-13-2020, 07:33 AM

gilders

I recovered completely from the fall and aftermath. My PCP and rheumy both said the kidney cysts were nothing to worry about. And they run in my family. All is good here. The kids and grandkids will be here after while for an early Christmas celebration.

Hope your procedure hoes well.

Pete

12-13-2020, 07:49 AM

Masha

Tell your hubby flattery will get him everywhere. 😂😂😂

richard052018

12-14-2020, 04:14 PM

A little more info regarding @John (https://www.wegeners-granulomatosis.com/forum/member.php?u=8112)S conversation with Dr Villa Forte. She called me at about 7:00 last night. So far, the vaccines are OK for us weggies. The trick is getting the shots timed around rtx treatments.

I have been getting an annual dose of 1000 mg of rtx usually in September-October. I have a new wrinkle in that my insurance is not approving this treatment any longer. They will approve two 500 mg doses spaced six months apart. I’m scheduled for my next treatment in March. If I can get both COVID shots before March 1 (unlikely), I’ll be OK for rtx as scheduled. If not, I’ll have to wait six months after rtx before getting the COVID shots.

Fortunately, my last 1000 mg dose should see me through until autumn 2021. Our plan for now is for me to get a B-cell test in February. If that looks good, I’ll postpone the March rtx and get the COVID shots at my earliest opportunity, then wait six months for the next rtx.

BTW, Dr Villa Forte says she has 139 weggies on rtx, and she’s going to call each of us. This is but one of the reasons why I think she’s a great doctor!

Dr. Villa Forte (who I consult with mostly remotely) told me she expected the insurance companies to discontinue allowing 1000mg doses after one of the recent trials showed 500mg every 6 months was effective. Crazy as it sounds though, I somehow got approved for 1000mg (from Anthem) after a little back and forth (my rheumy financial counselor is very good) and I go in on Wednesday for the infusion. My guess is someone is gonna get fired over that one.

me2

12-14-2020, 07:06 PM

Very interesting. A few months ago my insurance would not approve 1000mg but said they would approve 500mg which is what I ended up getting.

John S

12-15-2020, 01:39 AM

My September infusion was 500 units. My SED rate has been slightly higher than it was under 1000 units. Other than that I have not noticed any difference.

richard052018

12-15-2020, 02:02 AM

The term used by my financial counselor was "I was grandfathered in because I was part of the old system" I was fully ready in my mind to drop down to 500mg.

Has anyone pursued getting Genotech to pay for the other 500mg? For me, they pick up every bit of my out of pocket costs for the infusions (even the chair fee). I think they are worried about the biosimilars that I'm expecting will be pushed on us in the coming years as I believe their patent has expired

I also forgot comment. I read above (or on another thread) that Pete you are getting a "B cell test". I've asked my rheumy if she has ever pursued "B cell testing" and she said no. I consult with a nephrologist due to some slightly elevated creatinine (he blames my blood pressure meds and bactrim usage) and he said that "B cell testing" is primarily reserved for a clinical setting.

Anyhow, it would be interesting to see for those who have dropped from 1000mg to 500 mg how much this has impacted B cells. Too bad we don't have baselines on 1000mg. The only thing I do know is I've never had a positive ANCA or PR3 test since my original, and I attribute that to the RTX big guns. Who knows what other damage is being done by the drugs, I just need these damn drugs to work 9 more years. 9 more years!! Please let me get my little girl to adulthood!!

Masha

12-15-2020, 05:53 AM

Yes, Richard, when I went to 1000 mg my Canca and PR3 started coming back negative too. What I would like to know is who are these people who make decisions regarding our medical treatment. How long was their study? Where was it done? How many people participated? Why were we, the patients, not notified a study was taking place?
I am not happy about being shoved into a slot without more information.

richard052018

12-15-2020, 06:04 AM

Masha,

This is the study: https://clinicaltrials.gov/ct2/show/NCT00748644

The readers digest version: https://ancavasculitisnews.com/2018/10/23/fda-expands-approval-rituxan-remission-maintenance-treatment-for-gpa-mpa-patients/

John S

12-15-2020, 11:54 AM

Now I’m seeing reports that Rituximab patients can get the vaccine. I sure hope that they make up their minds in the next month.

Pete

12-16-2020, 06:36 AM

Thought this might be helpful...

https://www.washingtonpost.com/health/2020/12/15/moderna-vaccine-found-safe-effective/

John S

12-16-2020, 01:04 PM

Thought this might be helpful...

https://www.washingtonpost.com/health/2020/12/15/moderna-vaccine-found-safe-effective/

thanks. That is informative.

drz

12-17-2020, 04:25 AM

Now that the vaccine has been shipped and vaccinations begun, has anyone received a vaccination for Covid-19?

Has anyone received any recommendations on whether the vaccine is safe for us taking meds to suppress our immune system.

The other question is how effective it will be for us?My GPA doctor said we need more info to answer these questions.

Dirty Don

12-17-2020, 04:39 AM

Mayo rheumatology in PHX told me it will be fine for me. 1 doc even suggested it could help with inflammation...we'll see. I'm waiting...tell me when you get it!! LOL

richard052018

12-17-2020, 02:26 PM

Does anyone have any concerns WRT the rate of FDA approval of these vaccines? No prior vaccines for any of the coronaviruses. New strains popping up every day. Will the vaccine handle the new strains or will be be taking vaccines ad infinitum?

I'm not one that subscribes to conspiracy theories <sarcasm>except about the earth: totally flat</sarcasm>, but everything just seems off about this. Am I just paranoid? Is there any chance this can fizzle out organically like the other pandemics in Asia, Saudi Arabia, etc. eliminating the need for mass vaccinations?

The clinical research field does not normally function at this velocity. I'm concerned.

John S

12-17-2020, 11:35 PM

Masha

12-18-2020, 01:17 PM

I think your concerns are valid. However, like John, I too am hopeful. I don’t think that any of us will be the first to receive it. Doctors, nurses and nursing home patients get it first. We will know it is bad before it gets to us. Or it could be long term effects, five or ten years down the road. In that case, I am not going to sit in my house waiting to see what happens. As a believer, I can just say if the pandemic hasn’t killed us and the vaccine does, then it was meant to be.
Today I heard Costco has stopped all deliveries of flowers. They need the refrigerator trucks to rush the vaccine.
Honestly at this point I don’t know who or what to believe, but I do know the moon landing was a big conspiracy......KIDDING!:flapper::love:

Susan B

12-18-2020, 04:52 PM

If I understand correctly, some trials with humans and animals ran concurrently—normally humans’ would only come after animal studies are completed. That and the great deal of urgency and a huge investment of resources could account for much of why these vaccines were developed much more quickly than others in the past.

I’ll be getting it soon unless my rheumatologist advises me not to do so. Not sure where I am in line but it could happen in the next few weeks. I’ll be sure to let everybody know how it goes.

John S

12-19-2020, 12:35 AM

Are any of the GPA patients also essential medical workers or in assisted living facilities? They would be the first of us inline for the vaccine.

drz

12-19-2020, 08:03 AM

You can check in the USA how much Pfizer vaccine your state got and numbers of people in priority list. My state only got 4% of what they need for priority listed people so only those people working with Covid-19 patients will get vaccine this month. Even if the Moderna gets approved and shipped we still will only have enough for 60% of top listed health care providers so it will be a long time before they get down to the lower listed ones like us vulnerable people. Each state also makes its own list of priority but they seem similar in generally following the Federal guidelines. More vaccines might also be approved and become available but the top two that seem the best tested will be in short supply for many months. The third one that is less effective and lacking in numbers of clinical trials compared to the first two might become the most used if it get approved due to being the cheapest even if it is less effective. It is also the easiest to distribute since it doesn't require freezing temps.

drz

12-19-2020, 08:12 AM

https://www.businessinsider.com/how-covid-vaccines-compare-cost-astrazeneca-oxford-pfizer-biontech-moderna-2020-11?op=1

How the three vaccines compare.
(https://www.businessinsider.com/how-covid-vaccines-compare-cost-astrazeneca-oxford-pfizer-biontech-moderna-2020-11?op=1)

Susan B

12-20-2020, 04:25 AM

For those concerned about the speed of vaccine development—hope this helps.

Dr. Pat Winokur, infectious disease specialist at the University of Iowa, gave this explanation as to why they have been able to develop a vaccine so quickly:

One of the things that we’ve had going for the past decade is a lot of interest in developing these more novel platforms for vaccines that allow us to create them faster. A lot of the thanks goes to the fact that we’re using cancer vaccines as a very promising therapy for helping control metastatic spread of cancer.
Because there’s been so much work over the past decade on creating these platforms of vaccines, we’ve been able to get the right proteins into these vaccine platforms to get them tested. There were a lot of tests that have been done in humans for these platforms to show that they’re safe.

The other thing that’s really helpful is the work that some of our scientists here on campus did with SARS and MERS. They were starting to understand what proteins are in these viruses that are very similar to the coronavirus that is now spreading across the globe. They found the most important proteins that stimulated an immune response, and because of that work, we were able to pick the right proteins and put them into these vaccine platforms.

So, a lot of the thanks goes to some very attentive scientists that have been working diligently for many, many years. That’s great insight, and I think it’s also important to note that this is kind of what happens when we have a global pandemic. The whole world is searching for this vaccine, so it’s not just a handful of researchers doing this work. It’s really kind of all-hands-on-deck right now.

A pandemic is a different kind of world view of science, and we know here on campus, all around the country and the world scientists have put aside their other research to really try and understand this coronavirus. They’re trying to understand the immune responses and other things that are causing some of the serious illness. That’s been exciting, and it is why we’re pushing the vaccine development so quickly.

A pandemic is a special time We have a need to get this vaccine out so people can start getting back to their normal lives, which I think most people would like to do sooner rather than later.

Excerpt was copied from here. Contains information about vaccine safety as well. Dated October 29, 2020.
https://uihc.org/news/covid-19-vaccine-development-updates

drz

12-20-2020, 08:55 AM

One article indicated that because of the prior research they had the knowledge a week after the virus was identified to make the vaccine for it. If they had rushed into production then and distribution it could have saved over a million lives. But no one was willing to risk pushing a vaccine without the clinical trials to establish safety and effectiveness. Clinical trials began 9 months ago so the vaccine was available then. So some argue that given the seriousness of the pandemic we should not have been so cautious and by- passed the usual clinical trials. The emergency authorizations is because they shortened the usual long term evaluation of the production process to make sure it was all standardized everywhere.

novastorm

12-23-2020, 07:15 AM

As best I can determine, Rituximab and biosimilars are manufactured around the world and in the US.

Sixto

12-23-2020, 04:42 PM

Now I’m seeing reports that Rituximab patients can get the vaccine. I sure hope that they make up their minds in the next month.Yep, just posted the articles in the other thread. Just Google covid vaccine Rituxan and lots of hits. Some very good write-ups, within the past several weeks. Posted links in other thread.

sshiveley

12-25-2020, 02:40 PM

I agree with drz-universal precautions, always. I am a frontline ER nurse, working with Covid patients everyday. I have been picking up time at our new temporary Bam infusions for Covid positive pts. It's a lab created antibody to help keep positive patients out of the hospital. I am still on prednisone, Cellcept and Bactrim (3 x weekly) so far I am fine, but how do we really know? We all have so many aches and pains, lethargy, sinus and lung issues, the only way we would know if we had the Vid is by getting tested, and the tests are only as reliable as the ones doing the swabbing. Stay safe.

sshiveley

12-25-2020, 02:44 PM

You are blessed! Stay safe.

sshiveley

12-25-2020, 02:51 PM

Thanks for this info- I was really on the fence about this vaccine, I did receive it the 2nd day it arrived at OSU in Ohio, still uncertain but being in the frontlines, I feel I needed to get it, Dr Allen who is a pulmonologist at OSU and is involved with distribution of the vaccine talked in length with me about it. Did I make the wrong decision? Time will tell, maybe I will grow another eye, that wont have double vision peripherally like both do now.:crying:

John S

12-28-2020, 07:48 AM

CDC update from Saturday

https://thehill.com/policy/healthcare/531722-cdc-issues-new-guidance-about-vaccinations-for-people-with-underlying

drz

12-29-2020, 04:40 AM

My local internist told me to get the vaccination when it becomes available. He estimates it will be at least two or three months for me even though I am on three high priority lists, age, health issues, and living in a congregate care facility. He said they don't even have enough vaccine now to vaccinate all the medical staff caring for Covid-19 patients. One editorial said if we can't even vaccinate all the medical staff treating Covid-19 patients what are the prospects for successful widespread vaccination of general public? Things should get better though as more vaccines become available.

He said it will be safe for me (mRNA type) and most likely be more effective than my annual flu shot.

John S

01-04-2021, 04:34 AM

My wife and I received emails from Loyola yesterday morning, inviting us to schedule Covid-19 vaccinations. We had our first dose of the Moderna vaccine by 4:30 PM. Our second dose will be January 28th. My next Rituximab treatment should be at the end of February.
“I love it when a plan comes together.”

drz

01-04-2021, 06:59 AM

John S

01-04-2021, 07:36 AM

I had Googled “Loyola COVID vaccine schedule” and it gave me a form to fill out. We got the emails the next day

Alysia

01-05-2021, 04:15 AM

Hello, my friends,

Sorry for not being here for some time. I've missed you all :hug2:

I also got the first shot of the Pfizer anti covid vaccin last Thursday, December 31 - best way to end 2020 :flapper: Second shot will be 3 weeks later. Except from slightly sore arm for 2 days, so far I am doing well.

Israel has become first world leading country in anti covid vaccinations (considering population's size). Our prime minister was the first one to get the vaccin on Saterday's evening at the week before Christmas, and during those last 2 weeks more then million Israelis have already gotten the first shot 🇮🇱

What a nice Christmas gift we got :wub:

I feel proud at my country because they do it fast, safe, and fair. I got my vaccin in a drive in station sitting in the car. They have arranged many stations all around the country. First priority are medical teams, people above 60yo and immune compromised people. This is how I got my shot so early.

AND Since we can't be sure how much it will succeed with immume compromised people, they have also included our families to give more protection (above age 16). So, my older son and my daughter also got it together with me.

My parents who are 79 and 85yo got it in a hospital. My dad was very impressed and proud at Israel, and rightly so. Seeing how they respect the lives of the old and the sick 🇮🇱

As for WG - before going to do the vaccin I did blood tests and consulted with my WG dr. He said not to worry. That it is safe although we can't be sure how much it will protect me.

My Igg and Igm are below the normal so I didnt do rtx on Novmber as I should have done. Somehow, I guess dr. Phil is watching over me, as my wg is not too bad thanks to a new med, Leflunomide, in a trial to hold it without rtx as long as my Igg and Igm are too low. So it turns out for good considering the vaccin.

Sending you all prayers and much love :hug3:

gilders

01-05-2021, 04:42 AM

So good to hear from you, Alysia.
It's great news that you've had your vaccination and all seems to be getting well organised in Isreal. The figures I've seen show that just over 10% of Isreal's population have had the vaccine. It's also great that family members of immune compromised people get the vaccine too.
The situation is very bad in the UK, worse than an any point since Covid-19 appeared.
It's very scary knowing that whatever lockdown measures may occur in the UK, I will not be safe as supermarkets will not close and that's where my wife works.
The lucky people to receive their vaccine in the UK are due the second dose 3 weeks later, but it is now looking like it will be 3 months later. They may not even receive the same vaccine, depending on what is available at the time.

Thanks for reporting back on your experience with the vaccine, it's great to hear you've had no adverse side effects.

John S

01-05-2021, 01:16 PM

I have not any any reaction to the vaccine. My wife has complained everyday about how sore her shoulder is.
A government web site safe.cdc.gov has contacted us each day to see if we have had any bad reactions.

Pete

01-09-2021, 01:11 PM

Interesting study...

https://onlinelibrary.wiley.com/doi/10.1002/acr2.11204

Peter Marsham

01-10-2021, 04:21 AM

Hi Alyssa, nice to see you back, and good to see your family is getting good care. Just make sure you let us know if you grow elbow horns or get laser vision.

we’re still waiting for the rollout in Australia, but ScoMo (our prime minister) has bumped the schedule up from mid March to mid February. We’re still waiting on final safety approval from the Therapeutic Goods Administration but that’s more a formality at this stage. We’ll be getting the Pfizer and AstraZeneca vaccines and we have agreements to procure Novovax, which is a new one in me. It’s estimated that ten million people will be vaccinated by mid year.

it’s good to know that this too shall pass.

drz

01-10-2021, 03:01 PM

Interesting study...

https://onlinelibrary.wiley.com/doi/10.1002/acr2.11204

Who else participated in this study?

drz

01-12-2021, 03:25 AM

How many have got their vaccination for Covid-19?

Pete

01-12-2021, 04:09 AM

drz

Here’s what the study gave as participants:

“Patients with vasculitis in North America were invited to complete an online survey through the Vasculitis Patient‐Powered Research Network in collaboration with the Vasculitis Foundation and the Relapsing Polychondritis Foundation. Questions focused on concerns and behaviors related to doctors’ visits, tests, medication, and telehealth use. Factors affecting their concern and health‐related behaviors were determined.
Results“Data from 662 patients were included: 90% of patients were White, 78% were women, 83% expressed moderate or high levels of concern about COVID‐19, and 87% reported that their vasculitis moderately or extremely affected their level of concern.”

I was one of the 662. I regularly receive surveys from the VPPRN, but only complete those that interest and apply to my case.

John S

01-13-2021, 12:31 AM

For the last 4-5 days I have noticed a bad taste in my mouth and have been smelling strange things. I suspect this is related to my first shot of the Moderna vaccine.

drz

01-13-2021, 03:42 AM

For the last 4-5 days I have noticed a bad taste in my mouth and have been smelling strange things. I suspect this is related to my first shot of the Moderna vaccine.

That is not one of the typical side effects. Has any one asked you about side effects?

chrisTIn@

01-14-2021, 11:58 AM

How many have got their vaccination for Covid-19?

My husband and I are still waiting to be scheduled.
In our country healthcareworkers are vaccinated first.
There is still much discussion about the different sorts of vaccins.
For example: when did they have been approved? How do they have to be given (once, twice), how do they have to be stored?
(some at very low temperature, which causes logistic problems because not every 'safe' location has freezing capacity...

So, we have to be patient, and try to stay safe, during the renewed and prolonged lockdown :rolleyes1::wink1:

drz

01-15-2021, 12:44 PM

Lot of technical terms but gist of it is that vaccine is safe.

January 14, 2021

Interim analysis of early trial shows COVID-19 vaccine Ad26.COV2.S safe and immunogenic

An interim analysis of phase 1–2a trial published in The New England Journal of Medicine shows that the coronavirus disease 2019 (COVID-19) vaccine candidate Ad26.COV2.S had an acceptable safety and reactogenicity profile and was immunogenic after a single vaccination with either the low or high dose in both younger and older adults.
In the trial conducted at 12 centres in Belgium and the United States, 805 healthy adults between the ages of 18 and 55 years (n=402) and ages 65 years or older (n=403) were randomly assigned to receive the Ad26.COV2.S vaccine at a dose of either 5×1010 viral particles (low dose) or 1×1011 viral particles (high dose) per mililitre or placebo, administered intramuscularly, in a single-dose or two-dose schedule 56 days apart. The primary end points were the safety and reactogenicity of each dose schedule.
After the administration of the first vaccine dose in participants in both cohorts and after the second dose among participants between the ages of 18 and 55 years, the most frequent solicited adverse events were fatigue, headache, myalgia, and injection-site pain. The most frequent systemic adverse event was fever. Systemic adverse events were less common in participants 65 years of age or older and in those who received the low vaccine dose.
The researchers reported that the local and systemic reactions occurred on the day of immunisation or the next day and generally resolved within 24 hours. Further, the systemic reactions were very responsive to antipyretic drugs, and no need for the prophylactic use of such drugs was identified. In addition, after the second dose in the 18-to-55 age group, the incidence of grade 3 solicited systemic adverse events was much lower than that after the first immunisation in both the low-dose and high-dose groups, a finding that the researchers said contrasts with observations with respect to messenger RNA-based vaccines, for which the second dose has been associated with increased reactogenicity.
Neutralising-antibody titres against wild-type virus were detected in 90% or more of all participants on day 29 after the first vaccine dose (geometric mean titre [GMT], 224 to 354) and reached 100% by day 57 with a further increase in titres (GMT, 288 to 488), regardless of vaccine dose or age group. The researchers found that titres remained stable until at least day 71. Further, a second dose provided an increase in the titre by a factor of 2.6 to 2.9 (GMT, 827 to 1266).
On the other hand, spike-binding antibody responses were noted to be similar to neutralising-antibody responses. On day 14, CD4+ T-cell responses were detected in 76% to 83% of the participants in the 18-to-55 age group and in 60% to 67% of those 65 years of age or older, with a clear skewing toward type 1 helper T cells. Meanwhile, among participants in the 18-to-55 age group, CD8+ T-cell responses were detected in 51% of those in the low-dose group and in 64% in the high-dose group. Among those 65 years of age or older, CD8+ T-cell responses were lower, with an incidence of 36% in the low-dose group and 24% in the high-dose group.
“Although all ongoing phase 3 studies of other COVID-19 vaccines have assessed two-dose schedules, a single dose of Ad26.COV2.S elicited a strong humoral response in a majority of vaccine recipients, with the presence of S-binding and neutralising antibodies in more than 90% of the participants, regardless of either age group or vaccine dose,” wrote Jerald Sadoff, MD, Janssen Vaccines and Prevention, Leiden, the Netherlands, and colleagues. “In addition, during 71 days of follow-up after the first dose, antibody titres further increased and stabilised, which suggests durability of the Ad26.COV2.S-elicited immune response.”
“Whether a second dose will provide additional benefit for either improved efficacy or durability in humans, especially in elderly persons in whom the immune response after the first dose tended to be modestly lower than that in younger participants, is currently being studied in a phase 3 clinical trial,” the authors added.

Reference: https://www.nejm.org/doi/full/10.1056/NEJMoa2034201?query=featured_home

SOURCE: The New England Journal of Medicine

Peter Marsham

01-16-2021, 02:48 AM

Thanks for the info and link, makes good bedtime reading. Am I being presumptuous in thinking 2021 may just be a tad better than that other year?

PattyL

01-18-2021, 08:59 AM

Has anyone gotten the second dose? Side affects? What was the outcome?

John S

01-18-2021, 12:58 PM

My wife and I have the second dose scheduled for January 28th.

John S

01-30-2021, 02:35 AM

We got our second dose of the Moderna vaccine yesterday. No side effects are apparent.

PattyL

01-30-2021, 07:26 AM

That's GREAT!! Hopefully nothing comes up. I'm going to get my first dose today..a little nervous. Thank you for your feedback very much appreciated. Take care.

Blessings

Pete

01-30-2021, 07:48 AM

Just getting in under the wire. My first dose of COVID vaccine is scheduled for Tuesday with the second dose 3-4 weeks following. I have an rtx infusion on March 22, and doc wants three weeks between second dose and rtx. Phew!!

We were able to get appointments online through MyChart at OSU. Hope the appointment holds.

Masha

01-30-2021, 08:58 AM

The good news is we all seem to be on the right time line. My second one is scheduled for Feb 17th, Infusion scheduled for March 18th. I was 6 months out from last infusion when I got 1st vaccine. I will be about a month and a half late for next infusion. But at least we are getting vaccines.
The bad news is there is a new strain of COVID. There was an article in this weeks WSJ. It stated that it is coming from S Africa. Two people in SC have been diagnosed with it. They never traveled to S Africa. Moderna is looking at a booster shot to be added.

John S

01-30-2021, 10:47 AM

I was tired all day today. Felt exhausted. I suspect this is from the second dose. I’m perking up now but my appetite is gone. My next Rituximab is at the end of February so it seems that all is well.
My wife and I are planning to continue wearing masks and social distance until things settle down.

John S

02-01-2021, 02:53 AM

Yesterday I was a few pounds lighter but back to normal (eating everything in sight).
After both our first and second doses we were followed up by an after vaccination web site called "V-Safe". It is run by the CDC. After the first vaccination, it followed up every day or so for two weeks to see if we had any issues. It followed up yesterday and asked if we had gotten our second shot.

Pete

02-03-2021, 10:53 AM

We just got home from getting our first dose of Pfizer vaccine. OSU’s process was very organized. We were at the Schottenstein Center for about an hour. Second dose on 2/23.

John S

02-04-2021, 12:09 AM

We just got home from getting our first dose of Pfizer vaccine. OSU’s process was very organized. We were at the Schottenstein Center for about an hour. Second dose on 2/23.

Any side effects?

Pete

02-04-2021, 01:22 AM

This morning, I have very minimal pain at the injection site — pain is a 1 on a scale of 0-10.

PattyL

02-04-2021, 11:46 AM

That's reassuring, no flu like symptoms for either of you? chills, fever? I got my first shot Jan 29th now just concerned about the second one and the side affects. my arm was a little sore at injection site and I woke up with some vertigo don't know if that's related. I will def keep wearing a mask and social distancing as well.

Pete

02-04-2021, 11:51 AM

PattyL

The first shot produced only the minimal injection site reaction. No fever, malaise, nothing. I get the second dose on 2/23. I hope I do better than I did with the second dose of shingrix vaccine. With that, I had mild flu-like symptoms for a couple days.

John S

02-11-2021, 11:47 PM

It’s been 2 weeks since my wife and I got the second dose of Moderna vaccine. We have gotten everything via online ordering and curbside delivery for 11 months. We have become used to stores “substituting” items if they don’t have the specific brand or size of what we order. They have also sold us fruit that we would normally not choose.
I am itching to go grocery shopping. I think that we could do that safely, maintain distance, wear masks and sanitize hands. My wife is reluctant.
Dammit.

Pete

02-12-2021, 12:54 AM

John S

I’m just behind you. We get our second doses of Pfizer on 2/23. OSU has used MyChart to notify people of their eligibility for vaccination and to schedule appointments. It’s worked very well for us.

I’m pointing at March 9 to start toward in-store grocery shopping. I have a rtx infusion on 3/22. Once I’m past that, a cautious resumption of family visits will happen. Thank God for Facetime as we would not have seen our grandkids since late December...

Masha

02-12-2021, 07:12 AM

John,
Sounds exactly like the way we have been living. It is frustrating to watch on the IPad as the shoppers are putting things into your cart. But my husband keeps telling me it is better to be frustrated than to get COVID. I wonder how many people with compromised immune systems are being as careful as we are. We get our second shot next week but will continue this lifestyle until more people are vaccinated, and we see a significant drop in hospitalizations and deaths.
We really used to make a date event out of going to Costco, but after I heard that 145 of their employees came down with COVID we will put that on the back burner. One thing I have learned from this are some places to order food from all over the country. A place called Brooklybakery ships and they have the best black & white cookies, World Market ships spices, jams and all kinds of things, Fabko out of NJ ships Eastern European food, Italian I make myself. I found an Amish place that ships pies and /or the ingredients to make your own- haven’t tried them yet.
Your wife is probably right, better to be safe than sorry.

John S

02-12-2021, 11:53 AM

drz

02-14-2021, 07:33 AM

Having a compromised immune system makes the efficacy of the Covid-19 vaccination a guessing game. My infection specialist estimates we might have less protection than the 90-95% rate they found in their studies but hopefully we will have some protection and probably more than we get from our average flu shot. He advised me to wait a couple weeks after second shot before taking on any new risk like going to a store. He believes that even if I get infected with Covid-19 that my chances of dying or needing ICU care will be very low. Earlier studies indicated only up to 95 % protection so even with healthy people with good immune systems 5% still got infected and us immune compromised people will most likely have a lower protection rate. So I plan to keep wearing a mask and doing as much safe social distance as I can even after I feel like taking the risk of shopping in a store. When the infection rate becomes very low in my area I might start eating out again. Of course the new virus mutations and studies on rates of re-infection can changes things a great deal as we learn more.

We get our groceries delivered to out building and give our staff a list of items we want and they order them for us. I would usually get one or two wrong items this way since it was not specific enough. After the store started a web page where I can order off their sales brochure or search inventory in the store I have done much better in my shopping but some times they are still are out of stock for item I wanted especially for fresh baked goods since they are often sold out. And mistakes can still happen but they usually fix them as soon as they catch it.

chrisTIn@

02-16-2021, 06:40 PM

Having a compromised immune system makes the efficacy of the Covid-19 vaccination a guessing game.

When the infection rate becomes very low in my area I might start eating out again. Of course the new virus mutations and studies on rates of re-infection can changes things a great deal as we learn more.

I haven't been vaccinated yet, but I totally agree with your strategy.
As you already said, the effects of the Covid-vaccinations are not totally predictable for people with compromised immune-system.
I plan on being carefull, even after being vaccinated. Meanwhile keeping a close eye on new studies about Covid-19...
Only when the infection-rate is very low I will feel secure enough to go out shopping and dining.

Last summer my family and I followed the same strategy. When the infection-rate was low enough, and the weather was good, my husband and I took a holiday at the seashore.
We could dine out and sit at terraces, enjoying the light of the setting sun. Meanwhile keeping as much distance to other guests and waiting staff as required.
My daughter and her friend went to France, where they had a very good time, although masks were required in all supermarkets and restaurants.

drz

02-17-2021, 08:03 AM

I got my second vaccination today but had a bit of an allergic reaction so I had to go to the emergency room where they gave me a steroid shot in addition to the two Benadryl and Tylenol I took before going. Now I'll find out if I have any more reaction to the vaccination since people often have more reaction to the second shot than the first.

Masha

02-17-2021, 10:31 AM

My neighbor had a strange reaction to her first shot. She was fine, then one week later had enormous swelling and redness from her shoulder to her elbow. She immediately went to her doctor. He looked, left the room to look something up and came back to tell her that the medical professionals are talking about a delayed reaction. He gave her some meds ( I don’t know what) she left and it went away.
Lesson learned- do not take any chances. Be like drz or my neighbor, seek medical help.
Thank you, drz, for sharing your experience with us. I am sorry you had to go through that reaction, but it resonates with me that I must react immediately.
The risk of a negative reaction may not be high, but then again, what were the chances of any of us getting GPA?

me2

02-17-2021, 10:34 AM

Hoping you are recovering nicely from this bump in the road drz. I had a reaction to a Hep A shot years ago and it was pretty scary - but got better quickly. I'm hoping the same speedy recovery for you.

drz

02-17-2021, 12:35 PM

Ten hours later I have a mild headache and more fatigue but I think this a good sign since it means my suppressed immune system is reacting to the vaccination which increases my chances of getting some protection against Covid-19. The tightness in my throat is much better and the steroid shot has not raised too much havoc with my blood glucose levels so my insulin pump still seems able to handle the increased blood glucose from the steroid injection.

Debbie C

02-17-2021, 02:28 PM

Hi everyone... I haven't been on here forever. I hope everyone is doing well and there has been no Covid incidents. I tried to schedule my vaccine but where I live you have to be at least 65 and I am a few months short of that. Although today I went onto a Rite- Aid site and lied about the year I was born and they let be schedule a vaccine BUT before I hit the enter button there was some fine print about the Moderna vaccine that I took time out to read and by the time I was done I lost my timeslot and everywhere else was booked. I had some concerns about the vaccine because my rhuemy at Cleveland Clinic told me to take it at my own risk, since there hasn't been many studies on it with immune suppressed people, although my kidney dr. said to take it. Anyway there was a 800 # to call and talk to a Moderna "expert" and after telling him about having WG along with COPD and that I am on prednisone, I wanted his opinion. After being on hold for about 5 min. he said I should check with my healthcare provider before getting it !!!! So I don't know what to do. 1 dr. said go for it and the other said at my own risk. I know geting Covid would be worse than the vaccine but I just needed someone else to tell me it would be o.k. So that's where I stand. On the news tonight it did say not to take any tylenol with the vaccine which I take everyday so I was glad to hear that. Any comments wold be appreciated. And I'm glad to be back !!!

Pete

02-17-2021, 02:44 PM

Cathy and I had our first doses of Pfizer two weeks ago. Second dose is next Tuesday. Dr Villa Forte wanted me to have covid vaccine at least three weeks before my next dose of rtx. Looks like I’ll be good there.

I had very mild soreness at the injection site for about 12 hours with the first dose. Hoping for a similar experience with dose #2.

Peter Marsham

02-20-2021, 03:54 AM

Just be aware the second dose can induce a stronger reaction, very flu like for a day or two. If so, that’s a good sign, means your immune system is working against the vaccine as it should. Just plan to have a day or two off work after the second dose.

drz

02-20-2021, 09:00 AM

I had an reaction to my second injection which felt like my allergic reactions to sulfa and Z -packs antibiotics. My throat started to tighten up so I went to ER and they gave me 40 units of Solu-Medrol. I had taken 2 generic benedril and tylenol already so they didn't give me any more of those. I had to repeat the benedril during the night but the next day only had the expected headache and fatigue and sore arm which went away in a couple days. One lady I know got very ill for three days and her arm was swollen and red but most people had no problem or reactions to the shots.

John S

02-26-2021, 08:26 AM

I got my second dose of Moderna vaccine in January 28th. Had a Rituximab treatment this morning (500 units).
“I love it when a plan comes together”

Pete

02-26-2021, 09:40 AM

My wife and I got our second doses of Pfizer vaccine on 2/23. My wife had minimal reaction to it, but I had flu-like symptoms for about 24 hours. Feeling normal now. Next rtx is March 22.

Masha

02-26-2021, 11:43 AM

Same with us. Got the second Moderna last week. I just had a sore arm, but my husband had a delayed reaction with fever, chills, aches and pains. I saw my rheumatologist today. I never fully understood how those of us on Rituxin are for high risk terminal COVID. Just as I was starting to feel safe she gave me the percentage. It would be up to your own rheumatologist to share what they want with you. The Rituxin works for my GPA, so I guess it is six of one, half dozen of the other. I will be getting my next infusion in 2;1/2 weeks. The jury is still out on how effective the vaccine is with us. She said not to be surprised if I will be offered a booster at summer’s end. In the meantime I am to continue being sheltered, let no one in, no restaurants, shopping or travel. I do realize I am in that very small percentage of high risk, high blood pressure, high sugar due to prednisone, over 70, GPA. I am just hoping for a herd immunity. Thought the worst was over after receiving the vaccine, but now I understand it is not. More groundhog days ahead.

drz

03-30-2021, 07:33 AM

MARCH 29, 2021
Rituximab therapy linked to more severe COVID-19 in patients with inflammatory rheumatic and musculoskeletal diseases: Study
Rituximab therapy was associated with more severe coronavirus disease 2019 (COVID-19) among patients with inflammatory rheumatic and musculoskeletal diseases, according to a study published in The Lancet Rheumatology.

Between April 15 and November 20, 2020, researchers analysed data of 1,090 patients (mean age 55.2 years; 67% were female) with inflammatory rheumatic and musculoskeletal diseases and highly suspected or confirmed COVID-19 from the French RMD COVID-19 cohort.

Of the patients, 63 were treated with rituximab, mainly for rheumatoid arthritis (49%), antineutrophil cytoplasmic antibody-associated vasculitis (17%) and systemic sclerosis (11%). Of the 1,027 patients who were not treated with rituximab, a subgroup of 495 patients had diseases for which rituximab is a recognised therapeutic option.

John S

03-30-2021, 12:06 PM

I read drz post about theFrench study three times and do not understand it.

me2

03-30-2021, 01:54 PM

I think it is saying this: Patients with inflammatory rheumatic diseases (IRD) may be more likely to acquire severe pneumonia due to COVID-19, according to a study published in the Journal of Rheumatology.1 Additionally, patients with autoimmune disease who are being treated with rituximab are especially at risk compared with the general population.

John S

03-30-2021, 11:29 PM

:ohmy::ohmy:

I think it is saying this: Patients with inflammatory rheumatic diseases (IRD) may be more likely to acquire severe pneumonia due to COVID-19, according to a study published in the Journal of Rheumatology.1 Additionally, patients with autoimmune disease who are being treated with rituximab are especially at risk compared with the general population.

Jules

04-08-2021, 04:17 AM

Hi everyone, I haven't logged on for ages but great to read all your supportive comments during these uncertain times.

Despite our very best efforts to keep Covid away (including disinfecting EVERYTHING that came even close to the front door!) it came for a visit at our house just before Christmas, when the UK's Kent variant took hold - luckily, although I did have symptoms (cough/temperature/loss of taste and smell) the symptoms were very mild compared to many poor folk who have contracted it! I have to confess it was a worrying time, not knowing which way it would go due to taking Azathioprine & Prednisolone but we (the whole family got it!) were looked after amazingly by a 'virtual Covid clinic' at our local hospital, who sent out a pulse oximeter and then called on alternate days for a fortnight to get oxygen readings and check on symptoms.

Interestingly, I was advised to stop taking the Aza until I felt better and had lost the temperature - this I did, but 2 weeks after stopping AZA my nose started to crust badly and bleed (I'd not had a flare or experienced any wegs symptoms for several years). My rheumatologist couldn't be sure if the Covid had gone for the 'weakest point' or whether it was Aza related. I guess I will find out when my nephrologist starts to decrease the Aza when the Covid situation is way more stable over here!

Today in the UK they have announced that the Astrazeneca jab will not be given to those under 30 (for once being the wrong side of 50 is a bonus!!��)

Stay safe & take the jab everyone!
x

Pete

04-13-2021, 12:31 PM

This makes me a little nervous. I got 500 mg of rituximab four weeks after my second Pfizer shot.

Autoimmune-disease drugs may reduce vaccine response; antibody treatments ineffective vs Brazil variant
https://reut.rs/2POGAST

vdub

04-13-2021, 01:35 PM

Christmas, when the UK's Kent variant took hold - luckily
Why is it ok to call it the UK variant, the South Africa or Brazil variant, but not ok to call it the China virus? Asking for a friend. :-)

Jules

04-13-2021, 06:31 PM

Over here, findings from most recent data has resulted in all adult household members living with someone who is immunosuppressed being able to get their jab, to try & prevent them passing it on.

Is it the same over there?

John S

04-13-2021, 10:26 PM

I need to keep reminding myself that the vaccine does not make me immune. Vaccinated people can still catch the virus. Vaccinated people can still transmit the virus.
When you’re vaccinated, if you get the virus, you are less likely to end up in the hospital or morgue.

Masha

04-14-2021, 02:56 AM

What makes me even more nervous is that our Rituxin, which I really need and receive, knocks out our B cells and in order to fight COVID we must have our Bcells. My rheumatologist told me the mortality numbers and I have been losing sleep. I probably will not feel safe until herd immunity.
As far as the vaccine goes, we know we did not get the full effectiveness, but something is better than nothing.

Peter Marsham

04-16-2021, 06:32 AM

I got my first AstraZenica jab ten days ago (phase 1B in Australia), then was told I should wait four weeks before getting the flu shot. I didn’t know what to expect, felt like I had a headache (but that could be anything really), but otherwise had virtually no reaction. I hope it’s working. Next shot is July 1, because somebody suggested three months between shots is just as effective as three weeks, and now I may need Ritux by the start of June so as not to conflict with the booster. Fortunately it’s only a single infusion this time round. I’m sure everybody can appreciate the confusion of all this.

oh woe to me!

stay safe everybody, and remember...
No matter where you go, There you are.

Middlesista

04-22-2021, 03:28 AM

Hi folks- From the reading I have been doing have not come across anyone who has received the Covid vaccine and on Rituxin even with proper timing to have a positive result in the testing for the antibody test for the spike proteins or the nucleocapsid protein. Wondering if anyone here has tested positive and also if not what are the next steps planned? Thanks!

Peter Marsham

04-22-2021, 08:04 PM

I may ask my rheumatologist if he can check that after my next infusion (end of May/start June at this stage) . Second COVID shot is July 1. Remind me before then, otherwise I’ll forget.

greenjeep

05-08-2021, 02:29 AM

I believe the vaccine caused a mini-flare with me. I had the second dose about 2 and 1/2 months ago and have felt bad since. I have had daily headaches since where I rarely had headaches before. Also, my sinuses are in a constant state of irritation.
I'm pretty irritated with our global response to this thing, including bewildering announcements from the CDC. It has ruined what little trust I had in governments, and their ability to react to crises.

Sent from my SM-A102U using Tapatalk

drz

05-08-2021, 04:23 AM

I think my GPA was smoldering before the Covid 19 vaccine checked it into a more serious flare. I had never been able to get back to my basic maintenance meds of 5 mg of prednisone after a couple of hospital stays for pneumonia. The 60 mg of prednisone seems to have eliminated any nosebleeds and clots in my sinus rinse as well as getting rid of the inflamed eyelids which required me to take Restasis meds a couple times a day. My overall muscle aches and pains and sore joints also improved greatly although I still have some pain in one hip which may or may not be related to the GPA flare.

I hope after I finish the rituximab treatment I will be able to get back to a more stable drug induced remission. I would also like to get tested to see if I developed any immunity to the Covid 19 virus after getting both Moderna shots.

I wonder how many people with autoimmune disorders were pushed into a flare or exacerbation of their autoimmune disorder.

John S

05-12-2021, 10:30 PM

My wife and I are going on a road trip tomorrow. We’ve been home bound since the virus began but a grandson is graduating high school in Texas. This will be over 2000 miles round trip. It’s scary but I think that it’s time.

drz

05-13-2021, 04:25 AM

How many people have been tested after the Covid-19 vaccination's to find out if they developed adequate protection tool Covid-19? How important is it for us to do so? Any information on how valid these tests are for us?

MAY 12, 2021

Study suggests rituximab associated with impaired serological response to COVID-19 vaccination in patients with rheumatic diseases

Rituximab, but not other antirheumatic therapies, was associated with impaired serological response to coronavirus disease 2019 (COVID-19) vaccination in patients with rheumatic diseases, according to a study published in Annals of the Rheumatic Diseases.
“There is a paucity of data on the effect of antirheumatic drugs on serological responses to COVID-19 vaccines. Anti-CD20 therapies deplete B-cells, with reconstitution often not beginning for 6–9 months after infusion, resulting in diminished humoral immune responsiveness to recall antigens,” wrote Robert Spiera, Hospital for Special Surgery, New York, New York, and colleagues.
For the study, researchers retrospectively analysed data of 89 adult patients from one rheumatology practice who had received at least one dose of COVID-19 vaccine. All patients had a clinic visit from February 24 to April 8, 2021 and were serologically screened for antibodies to the severe acute respiratory syndrome coronavirus 2 Spike protein.
Of the patients, 83 (93.26%) had received both doses of a COVID-19 vaccine at the time of immunoassay. Further, 30 patients (34%) were treated with rituximab, while 35 patients (39%) were taking more than one antirheumatic medication at time of assessment.
Among patients treated with rituximab, the median time from the last rituximab exposure to the time of immunoassay was 212 days, whereas the median time from the last rituximab exposure to the second dose of COVID-19 vaccine was 167 days.
Overall, 68 patients had a positive antibody response and 21 had a negative antibody response. Most of the patients with serologically negative results were patients using rituximab (20/21), with the only other serologically negative patient having been treated with belimumab.
Among rituximab users, the researchers found that those with a positive serological response had a longer time from the last rituximab exposure to receipt of first COVID-19 vaccine dose compared with those with a negative response (median, 704.5 days vs 98 [IQR 64-164) days]; [I]P < 0.001). Further, among 11 rituximab-treated patients with data available for B-cell reconstitution, 4 were serologically negative and 7 were serologically positive. The median percentage of B-cells among those with negative serological response was 0 (IQR 0–0.15), while the percentage among those with positive serological response was 4 (IQR 1.2–10).
“In this study, all patients who did not demonstrate a positive serological response had been treated with rituximab, with the exception of one patient that was treated with belimumab, another B-cell targeting strategy,” the authors noted. “Longer duration from most recent rituximab exposure was associated with a greater likelihood of response. The results suggest that time from last rituximab exposure is an important consideration in maximising the likelihood of a serological response, but this likely is related to the substantial variation in the period of B-cell depletion following rituximab … Confirming B-cell reconstitution before vaccination may increase the likelihood of a positive serological response.”
“These data, if confirmed in larger cohorts, could have important clinical implications regarding timing of vaccination in rituximab exposed patients. In communities with limited access to COVID-19 vaccines, confirming B-cell reconstitution prior to vaccine administration may be prudent,” the authors added.

Reference: https://ard.bmj.com/content/early/2021/05/10/annrheumdis-2021-220604

SOURCE: Annals of the Rheumatic Diseases