Covid vaccins and WG

[Alysia]

Hi, how are you doing out there ?

I suggest we will collect here all the questions and medical info we can find on this subject, like professional articles or if someone has the chance to discuss it with his docs. Please don't post here "conspiracy" theories of any kind.

To be honest, the vaccins make me worried not less then the virus, for few reasons, so those are my questions:

1. Are we allowed to get them and which vaccin ? The Israeli one is made from dead virus so it is not for us. What do we know about the others ?

2. Can it cause us a flare ?

3. Rtx is deleting part of the immune system memory. So how useful a vaccin is for those on rtx ?
I had to do a tetanus vaccin a year ago after injury. I asked my wg dr. If it will still be valid after rtx and he said that he isn't sure and that in case of another injury I will need to do blood test to see if I need another tetanus vaccin or not.

4. My Igg and Igm are below the normal now due to many years on rtx. It means that my immune system is under functioning. What does it mean to get a vaccin in this case ?

5. I am worried about my kids getting the vaccin. If someone has a genetic tendency to develop AI disease, can the vaccin be the triger ?

We have enough time to make some research before we will need to make a decision.

Stay safe, my friends.

[gunnyl]

Any vaccine that utilizes T Cells to manufacture antibodies is not going to be good for anyone taking RTX as it depletes our T and B cells.
The Moderna and Phizer Vaccines are utilizing mRNA to administer the antibodies and from my perspective seems to be the most promising for those of us on RTX.
I plan to have a conversation with my Rheumatologist as the vaccines get closer to being released.

You can read up on mRNA here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6339677/

https://www.modernatx.com/pipeline/therapeutic-areas/mrna-therapeutic-areas-infectious-diseases

[drz]

Any vaccine that utilizes T Cells to manufacture antibodies is not going to be good for anyone taking RTX as it depletes our T and B cells.
The Moderna and Phizer Vaccines are utilizing mRNA to administer the antibodies and from my perspective seems to be the most promising for those of us on RTX.
I plan to have a conversation with my Rheumatologist as the vaccines get closer to being released.

You can read up on mRNA here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6339677/

https://www.modernatx.com/pipeline/therapeutic-areas/mrna-therapeutic-areas-infectious-diseases

My GPA doctor said same thing. Too early to tell but by the time they are available in a few months there should be more info on what is safe and what is likely to be most effective for us suppressed immune people. I will probably follow the recommendations from Mayo on this vaccine issue.

Even if we don't get the vaccine or can't take it, we will benefit from lower risk of contagion if most other people do get the vaccine.

[crowneagle]

There are a couple of things that give me pause. No mRNA vaccine has been approved for human use. From what I understand, all autoimmune subjects actively on immune suppression drugs are excluded from the vaccine trials. There has been talk that mRNA vaccines may lead to autoimmunity via molecular mimicry, epitope spreading or bystander activation. I'm in the beginning stages of researching these. Genetic susceptibility may be a predisposing factor. I believe it will be a while before weggies participate. I'm not sure whether RTX weggies would develop B cell antibodies, even though we might get some shorter term protection from our T cells. Any RTX weggie receiving most traditional vaccines should get them a few weeks before their scheduled infusions. This gives them the best chance of developing antibodies. Personally, I can never take any vaccine ever again. The last three triggered major relapses in my disease.


Could COVID-19 mRNA vaccines cause autoimmune diseases?

https://www.bmj.com/content/371/bmj.m4347/rr-6?fbclid=IwAR2aCU4Q0Yh9cgRA7SWVNqYd0dRvcOFUimq7QeA UFjpko6v5FmavdlGoAvg

[Masha]

I had the two shingles vaccines two years ago. The second one knocked my socks off. On any vaccine those of us on Rituxin are to receive either six months after infusion or several weeks before. We can have no live vaccines. My next infusion is scheduled for Feb 1, which means I cannot take the vaccine before Aug. 1. I will not postpone infusion, because I know from experience that is a bad thing. Waiting until August might not be so bad. Sheltering for a few more months may pay off, when I learn how the vaccine effects others.
I heard one doctor on TV say his 20 year old daughter can get it, but the 17 year old must wait until she turns 18. Just based on what I read and hear, I want more documented information.

[me2]

I have been tested to see if I currently had Covid and then also tested to see if I had Covid in the past. I asked my doctor if the test is reliable for someone who has VERY low antibodies like myself. He said he did not know- he didn't bother to try and find out either.
Since the test uses replication of antibodies I suspect my antibodies are too low to be detected. I have been sick twice with a flu-like illness since Covid showed up and it hit me very hard.
Prior to this I have gone many years without any flu-like illness. It makes me very suspicious that I am catching something during extreme (but not complete) isolation and personal protection procedures. Whatever it is I have caught must be super contagious.

[mishb]

I have been tested to see if I currently had Covid and then also tested to see if I had Covid in the past. I asked my doctor if the test is reliable for someone who has VERY low antibodies like myself. He said he did not know- he didn't bother to try and find out either.
Since the test uses replication of antibodies I suspect my antibodies are too low to be detected. I have been sick twice with a flu-like illness since Covid showed up and it hit me very hard.
Prior to this I have gone many years without any flu-like illness. It makes me very suspicious that I am catching something during extreme (but not complete) isolation and personal protection procedures. Whatever it is I have caught must be super contagious.

Oh Kirk, I'm sorry to hear that you have been knocked about - by something.
I certainly hope that it is not Covid.

I was wondering myself, about how they would be able to test correctly if your antibodies were already too low. Interesting.
The way they speak about Covid, it appears to me that with very low antibodies, you would probably be in an even worse way.
Let's hope and pray that it is just a rotten flu bug and not Covid - or worst still, a flare

Take care Kirk, (and everyone)

[NatriceRomeo]

I was diagnosed with Covid on the 6th. It has not been kind to me. I have had bilateral pneumonia, nausea and vomiting-still. That being said, I am worried about an mRNA vaccine. It just does not seem like a good idea to me to have a vaccine mess around with the inside of your cells. I would feel more comfortable with a dead virus.
Anyway, hope you are all healthy and happy
Natty


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[gunnyl]

I was diagnosed with Covid on the 6th. It has not been kind to me. I have had bilateral pneumonia, nausea and vomiting-still. That being said, I am worried about an mRNA vaccine. It just does not seem like a good idea to me to have a vaccine mess around with the inside of your cells. I would feel more comfortable with a dead virus.
Anyway, hope you are all healthy and happy
Natty


Sent from my iPhone using TapatalkNatty,

Wishing you a complete and speedy recovery.

Ted

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[Ljj]

I had my first shingles vaccine 3 weeks after Rituximab as my pharmacist suggested. Does that mean it won't work? My rheumatologist said to get the second dose 2-3 weeks before my next Ritux infusion which is more in line with what you said. Just wondering how to fit in vaccines when my Ritux is every 6 months for the next 2 years?

[Masha]

The best person to answer this is your doctor. In the past, just receiving the flu shot, I have to complete and sign forms. Then the pharmacist reviews everything. If you don’t want to wait until your next doctors visit, do they have a portal where you can ask a question?
Getting your Rituxin every six months should not cause interference with getting vaccines. Just get the vaccine two weeks before infusion.
The one thing I know for sure is that we can not have a live vaccine, nor can the people we live with. Examples of live vaccines are measles, mumps, polio.
They surely must come out with a covid vaccine for people like us. I have friends with RA and cancer and they can not have a live one. I am 70 years old and my friends are also older. Since we are the ones at the highest risk of this disease, it only seems logical that one will be made available for us.
Again, the best person to ask about the effectiveness of your vaccine after infusion is your doctor. If he/she does not feel it was effective they should provide you with a direction of what to do before you get the next shingles vaccine.

[Alysia]

me2 and NatriceRomeo - sending you prayers for an easy and perfect recovery. Can you, please, share what are your symptoms ? WG and covid might be too similar. With every morning coughing I would ask myself where did it come from, unless I know that I have kept a full isolation in the last week or so.

I know about 3 more weggies who caught the covid, had it tough but have recovered. Thanks be to God.

[Alysia]

I have found 2 articles in the facebook vasculitis UK group.

The first - things are complicated...

https://www.oatext.com/covid-19%E2%80%93challenges-ahead-of-vaccination-in-immunocompromised-patients.php?fbclid=IwAR1lyVkhPRdYTJpuC4jCd1zmKBO4 FitkhMuDm2IMm7IjMs-lqUPFozo2W_U#gsc.tab=0

[Alysia]

This one is more promising then any vaccin and they have started the trial in UK:

https://www.bbc.com/news/health-55022288

Quote:

A possible alternative to a vaccine, for people without functioning immune systems, is entering its final stage of trials.


The injection was developed using antibodies - made by the immune system to fight infection - produced by a single Covid patient in the US.


It is hoped it could provide at least six months' protection for patients who cannot receive vaccines.


Trials involving 1,000 UK participants begin in Manchester on Saturday.


A further 4,000 people are involved in the trial globally, which is being organised by pharmaceutical giant AstraZeneca.


Participants will be given either an injection containing two different Covid-19 antibodies, which have been specially engineered to last longer in the body - or a placebo.


In recent weeks there have been promising developments in the creation of a Covid-19 vaccine, which works by priming the immune system to fight off the infection.

[gunnyl]

Great articles Alysia, thank you for sharing!

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[Peter Marsham]

Found this link https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjZyt3m9pPtAhVDxTgGHY_oAPsQFjALegQIBRAC&url=https%3A%2F%2Fwww.hematology.org%2Fcovid-19%2Fash-astct-covid-19-and-vaccines&usg=AOvVaw1eKZmChm_deKuygHPXYNK0.
Keeping in mind that no COVID-19 trial has been conducted on immunocompromised participants, it seems the news is not the best for such patients at this point. But also, keep in mind that we still have four to six months before any mass rollout, and there are still ongoing trials and other vaccines in development.

[me2]

@me2 (https://www.wegeners-granulomatosis.com/forum/member.php?u=842) and @NatriceRomeo (https://www.wegeners-granulomatosis.com/forum/member.php?u=9688) - sending you prayers for an easy and perfect recovery. Can you, please, share what are your symptoms ? WG and covid might be too similar. With every morning coughing I would ask myself where did it come from, unless I know that I have kept a full isolation in the last week or so.

I know about 3 more weggies who caught the covid, had it tough but have recovered. Thanks be to God.


Thanks Alysia.
In my case the symptoms were very different from WG. Sweats, fever, vomiting, diahreaa, and just extremely sick - very fast. So weak I literally grew worried that I was not strong enough to go to the bathroom and back. It was really crazy.
In both cases of illness I believed I probably had been exposed to someone sick with 'something' and within a couple of days I was down with it.

[NatriceRomeo]

me2 and NatriceRomeo - sending you prayers for an easy and perfect recovery. Can you, please, share what are your symptoms ? WG and covid might be too similar. With every morning coughing I would ask myself where did it come from, unless I know that I have kept a full isolation in the last week or so.

I know about 3 more weggies who caught the covid, had it tough but have recovered. Thanks be to God.

So, I work in healthcare. I was Covid tested the week before because I had sinus issues and it was negative. I went on antibiotics. On the 6th I woke up and lost all sense of smell. I contacted my work and they tested me again. That time I came back positive. I noticed that my sinuses felt swollen and just weird. My lungs started burning and I could not take a breath without severe burning pain. I have lung issues, but I’ve never had pneumonia. It was getting worse for about a week. My Drs refused to see me & I went to urgent care. They did xrays and I have bilateral pneumonia and shortness of breath. I’m over due for a Rituxin treatment, so at the moment I have frequent bloody noses, my joints hurt, I don’t know how much is from GPA or Covid. I still have some chest burning and am short of breath as well. So, to answer your question, the only real difference for me was my loss of smell, burning in chest and severe shortness of breath.
Natty


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[drz]

I was diagnosed with Covid on the 6th. It has not been kind to me. I have had bilateral pneumonia, nausea and vomiting-still. That being said, I am worried about an mRNA vaccine. It just does not seem like a good idea to me to have a vaccine mess around with the inside of your cells. I would feel more comfortable with a dead virus.
Anyway, hope you are all healthy and happy
Natty


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How are you doing now? Hope you are improving!:unsure:

[Alysia]

Thanks Alysia.
In my case the symptoms were very different from WG. Sweats, fever, vomiting, diahreaa, and just extremely sick - very fast. So weak I literally grew worried that I was not strong enough to go to the bathroom and back. It was really crazy.
In both cases of illness I believed I probably had been exposed to someone sick with 'something' and within a couple of days I was down with it.

I hope that you have recovered ?

Maybe it was some food poisoning ? If I remember correctly, you have MC like I do, so we are very sensitive to many kinds of foods.

[Alysia]

So, I work in healthcare. I was Covid tested the week before because I had sinus issues and it was negative. I went on antibiotics. On the 6th I woke up and lost all sense of smell. I contacted my work and they tested me again. That time I came back positive. I noticed that my sinuses felt swollen and just weird. My lungs started burning and I could not take a breath without severe burning pain. I have lung issues, but I’ve never had pneumonia. It was getting worse for about a week. My Drs refused to see me & I went to urgent care. They did xrays and I have bilateral pneumonia and shortness of breath. I’m over due for a Rituxin treatment, so at the moment I have frequent bloody noses, my joints hurt, I don’t know how much is from GPA or Covid. I still have some chest burning and am short of breath as well. So, to answer your question, the only real difference for me was my loss of smell, burning in chest and severe shortness of breath.
Natty


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Sounds tough... I am sorry. Sending you prayers.

How are you doing ?

I did have "pneomonia" which was wg flare. Had it in 2 or 3 flares.

[Peter Marsham]

I’ve been watching the UK Pfizer vaccine rollout from Australia. Any English Wegs patients have any further info from their specialist on the viability or other of this vaccine? Especially regarding monoclonal infusions or immunosuppressant treatments. I’m seeing my rheumy again in February, and won’t be getting anything unless he says so, but it seems pretty difficult to get solid data for immune compromised patients.

[Susan B]

I’ve put through the question of whether the vaccine is safe for me to my rheumatologist, but haven’t received an answer. I’m very curious as to what any of you are hearing. My hospital will start giving the vaccine to employees beginning next week. I don’t take care of COVID patients, and all staff who work in those units will be offered the vaccine first. Not sure when my unit’s turn will be, but we have about 15,000 employees so it could be a while.

Were it not for Wegener’s I’d take the vaccine as soon as possible, but I’m definitely not getting without the OK from a physician who understands GPA.

[me2]

Earlier in this thread I asked the question as to if immune suppressed patients would have accurate tests for COVID. I had two episodes of a serious flu-like illness in the past 4 months.

It was my thought that with such low antibodies it could test negative -even with a full blown case.

Today I found a bit of info in a JAMA article that I think answers the question for me "Krammer said that resorting to antibody testing to diagnose active infections is a “complete misuse.” Not only are antibody tests likely to report false-negatives early on, they’ll also miss infections among people who are immunocompromised and don’t produce antibodies."

In my opinion antibody tests are not accurate for those of us with severe immunosupression. I have found no info that says "Oh no, an antibody test works fine for suppressed people".

-- I realized that someone might want to read the full article that I pulled this quote from. Here it is: https://jamanetwork.com/journals/jama/fullarticle/2764954

[mishb]

I hope you have shaken the flu like illness now, Kirk, and that you are on the road to recovery.

Two episodes in 4 months is really strange though, considering the amount of precautions that you (or we) take :crying:

[me2]

Thanks Mish. The last twenty years it has been very rare for me to get a flu or cold- probably due to my personal circumstance of isolation and the great care I take with sanitation.
To get this flu like thing twice in a short time with INCREASED isolation and personal protection is VERY suspicious. Thanks for noticing that.

I cannot say that I had covid and because of low antibodies I will never know. Whatever I got had to be extremely contagious as I see VERY few people and take great precautions when I do. I live alone and no one comes to my house. Also, my two experiences were identical in every way leading me to think that whatever it was , it was the same bug.

In each case I got extremely sick on about the third day and then it stopped- leaving me to recover. I'm just glad that for myself it does not seem to have a lingering effect.


I know in some cases they use steroids to calm down the immune system. They also did this for SARS.
It seems that in some cases an over reaction immune response is actually what hurts people the most. I've wondered if some of us immune suppressed people have a degree of natural protection built in because our immune system is so limited in what it can do.

Crazy times we live in.

[Susan B]

(Edit: Whoops—see below.)

[Susan B]

So, I work in healthcare. I was Covid tested the week before because I had sinus issues and it was negative. I went on antibiotics. On the 6th I woke up and lost all sense of smell. I contacted my work and they tested me again. That time I came back positive. I noticed that my sinuses felt swollen and just weird. My lungs started burning and I could not take a breath without severe burning pain. I have lung issues, but I’ve never had pneumonia. It was getting worse for about a week. My Drs refused to see me & I went to urgent care. They did xrays and I have bilateral pneumonia and shortness of breath. I’m over due for a Rituxin treatment, so at the moment I have frequent bloody noses, my joints hurt, I don’t know how much is from GPA or Covid. I still have some chest burning and am short of breath as well. So, to answer your question, the only real difference for me was my loss of smell, burning in chest and severe shortness of breath.
Natty


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Meant to include this quote in my last post—Natty, wondering if things are getting better? Hope to hear you are improving.

[Sixto]

Hi All ... been reading here for a number of years ... I was diagnosed back in 2010, have a Trach, and started Rituxan several years ago.

I reached out to my Dr. last week, since I'm due for my 6-month Rituxan infusion this month, and he recommended that I wait and get the COVID-19 vaccine asap, then wait 3 weeks after the first dose, and get the Rituxan. I did delay my last infusion until 8 months (due to COVID caution in the Spring) so waiting may be fine.

I've now spent the last two days reaching out to my local ENT (who first diagnosed my Wegeners in 2010) & my local Rituxan infusion center, to get their help with the vaccine once it's available.

My Dr. only wants me to get the mRNA vaccine, no other variation.

Will see how this plays out. Figure I'll keep pushing locally, and watching here to see how you guys make out.

[andrew]

Hey Sixto thanks for reading all that time. Welcome! We would be pleased to know your experience, thanks for sharing!

[Sixto]

Thanks Andrew.

I've found this site to be very helpful over the years. A great resource here, and it makes it easier when seeing so many others dealing with the same issues.

[NatriceRomeo]

Meant to include this quote in my last post—Natty, wondering if things are getting better? Hope to hear you are improving.

Thank you for all your kind thoughts! I still am suffering from shortness of breath. It’s really interesting on calls (I am a paramedic & I have gone back to work). I am unsure how much of it is Covid related or Wegeners. Because I am a front line worker I can get the vaccine within the next month. To be honest with you, I have no clue how long I have to wait till i can get the vaccine after infection. I was initially very reluctant to get the vaccine, however after experiencing Covid-I can tell you it’s terrible! If I get Covid again, I’m not certain I would survive. So, after careful consideration, I thought, so far no one has died from the vaccine. I have reached out to my rheumatologist to see what she thinks. Also, I am late with the rituxin infusion. I was supposed to get it in October, but due to my daughter being placed in quarantine and then actually getting Covid... I’m not sure how long I can last. Anyway, that is my news so far.
Natty


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[Sixto]

I've been back and forth with my rheumatologist, ENT, Rituxan infusion doctor, and PCP ... no luck yet with access to an mRNA vaccine, but will keep pushing.

I did find a few GREAT articles.

Especially this one, it's my exact situation: https://journals.lww.com/neurotodayonline/blog/breakingnews/pages/post.aspx?PostID=1062

"Vaccination of patients receiving immunosuppressive therapy may require consideration of timing and potential modification of treatment, said Dr. Nowak. “The major question is what baseline therapy the patient is on, because this can affect the efficacy of the immunization. For example, if the patient is receiving B cell depletion therapy, such as with rituximab, the effectiveness of the vaccine may be diminished."

"To avoid this problem, Dr. Nowak recommends timing vaccine administration towards the end of the treatment cycle, just before the next dose is due, typically six months after the last one. “That allows the patient to mount an adequate immune response to the vaccine. Then two weeks later, we can start again with immunosuppression. This is not new—we do this with the flu shot every year," he said."

Another: https://www.oatext.com/covid-19–challenges-ahead-of-vaccination-in-immunocompromised-patients.php?fbclid=IwAR1lyVkhPRdYTJpuC4jCd1zmKBO4 FitkhMuDm2IMm7IjMs-lqUPFozo2W_U#gsc.tab=0

[Aneinu]

Dr Peter Merkel from Philadelphia told my son to take the vaccine, but it probably won't help much to prevent the COVID.

Godspeed to all

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[ljeff]

Im from UK and the vaccine is being rolled out now. I will be offered either Pfizer or AstraZeneca one in due course. Has anyone had any definitive guidance or recommendation from their doctor whether to take it or not while on rituximab?
Thanks
Lisa

[gunnyl]

My Doctor told me to take it when it becomes available although there is no guarantee it will be effective for me. There ha e been no studies on immunosuppressed people so we are going to be the Guinea pigs.

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[Masha]

My doctors will not allow Rituxin infusion until 4 weeks after second vaccine. Roll out in NC is 75 and over, in SC it is 70 and over. In Fl and TN it is 65. In Ohio it starts at 80, then 75, then 70. Anyone know age requirements in other areas?

[Sixto]

Im from UK and the vaccine is being rolled out now. I will be offered either Pfizer or AstraZeneca one in due course. Has anyone had any definitive guidance or recommendation from their doctor whether to take it or not while on rituximab?
Thanks
LisaBeen told to only get an mRNA vaccine (Pfizer or Moderna), at least 6 months after Rituxan.

[Masha]

NC dropped the age requirement for vaccines from 75 to 65. So many people were trying to get through to MUSC in SC they, including myself were unaware of this change..SC age requirement is 70. Husband and I stopped watching all news because of politics.
What is happening to all the people with compromised immune system that don’t meet the age requirements? I know Alycia in Israel got her vaccine and did not have to meet an age requirement. Are those of you, not in US able to get a vaccine without age requirement?

[Peter Marsham]

Don’t know about elsewhere, but in Australia we start rolling out mid February. We’re vaccinating essential/health workers first, then over 70s and people with comorbidities, then decreasing risk/age sectors. My rheumy told me last appointment that I was in line for early vaccination due to my Wegs, but it may conflict with next Ritux infusion (currently set for Match). If my numbers are ok, I’ll push the infusion back four weeks after second shot.

[PattyL]

CA now 65. UCSD is ready to schedule me I thought I would be ready to get it but now I will first talk to my Rhuemy.

[Middlesista]

I received the Pfizer vaccine last week - just about 6 months after my Rituxin and will get the second shot in February. I need to reschedule my Rituxin for 3 weeks after the second vaccine so late February or early March bringing me to 7 to 8 months rather than the usual 6 months. Has anyone heard of any interest in studies for those of us that are immune compromised?

[Middlesista]

Asked about having antibodies drawn to determine if vaccine offered some immunity and was told per an ID doc that at this point “we can not check vaccine ab titers to see if you have protection. If this changes, I will test you for vaccine efficacy. The reason why is that the antibody tests a different epitope “. Does this make sense to folks?

[Masha]

I was back and forth about when to get the vaccine and the timing of my infusion. The grocery store that has a drugstore about a mile from my house got them in. This was kept very quit and we were easily able to get an appointment. We got first one this afternoon, Moderna, second one in 4 weeks. Trying to get an appointment, age ranges changing, difficult locations, even having drive by at Charlotte Motor Speedway this weekend. I am waiting for my infusion center to return my call so that I can reschedule. I still don’t understand why people with our disease are not put on a list, regardless of age. Although I do understand the confusion some have about getting this vaccine. Since we know that we are all at different level of this disease, the best marker we can follow is adhering to our doctors orders. My doctor is being very strict regarding no infusion until four weeks after last vaccine. How effective will the vaccine be for people like us? The jury isn’t in yet. My personal opinion is that some protection is better than none.

[novastorm]

I'm scheduled to have vaccine tomorrow, the day after I take my weekly Methotrexate dose (17.5 mg). I am not on Rituxan infusions at all. Has anyone else had a similar situation (taking Mtx before getting the vaccine)?

[drz]

I'm scheduled to have vaccine tomorrow, the day after I take my weekly Methotrexate dose (17.5 mg). I am not on Rituxan infusions at all. Has anyone else had a similar situation (taking Mtx before getting the vaccine)?

I take AZA daily and was told not to make any changes in my meds and I got the first vaccination yesterday.

[NatriceRomeo]

I received the Pfizer vaccine yesterday. So far everything is going well. I have a sore arm and a headache.
Because I was infected with Covid-I’m very behind on my Rituxin treatment. I do not know if the problems I’m having are due to a flare (shortness of breath, joint pain ect) or if it is post Covid inflammation. My rheumatologist thought it was more important to get the vaccine than the infusion.
Hope everyone is well!
Natty


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[Happy Camper]

I currently take MTX and my doctor (Dr. Langford Cleveland Clinic) said to hold my MTX the week I get my vaccine. I'm scheduled for Friday for the moderna vaccine. I'm nervous to hold my MTX and take the vaccine. I don't want a flare-up. But also don't want to get covid. Ugh. Tough decisions.

[PattyL]

Has anyone gotten the second shot yet?

[John S]

My wife and I get dose #2 of Moderna on Thursday

[mishb]

I currently take MTX and my doctor (Dr. Langford Cleveland Clinic) said to hold my MTX the week I get my vaccine. I'm scheduled for Friday for the moderna vaccine. I'm nervous to hold my MTX and take the vaccine. I don't want a flare-up. But also don't want to get covid. Ugh. Tough decisions.

You should not flare with stopping MTX for one week.
MTX has a body life of 6 weeks, with it reducing in strength every week.
This means that if you miss taking it for a week, then you still have some MTX within your system, to keep on fighting for you.

Also, your specialist would not say it, if they thought it would be an issue.

Maybe the bigger issue, is taking your MTX and the vaccine at the same time.

[annekat]

My doctors will not allow Rituxin infusion until 4 weeks after second vaccine. Roll out in NC is 75 and over, in SC it is 70 and over. In Fl and TN it is 65. In Ohio it starts at 80, then 75, then 70. Anyone know age requirements in other areas? Hi, Masha, I've been away from the forum for awhile and just getting caught up on all the Covid posts. All I know is what it is in Washington; the first tier of Phase 1 was all kinds of people in risky health care situations, whether workers or patients, along with everyone over 65 (which includes me) plus people 50 and over in multigenerational households. Then comes tier 2, which is high risk critical workers over 50 in non-healthcare settings such as agriculture, grocery stores, educators, and corrections, then comes people 16 years and older with underlying conditions, then high risk critical workers under 50 in non-healthcare congregate settings, plus non-workers in those settings, such as group home residents, the homeless, and volunteers. Additional phases and tiers to be discussed later. It sounds so complicated, but at least they changed one of the age classifications from 70 to 65 and over, meaning I was going to have to wait until March, but I am eligible now. However, I'm going to wait for a couple of reasons, one of which is non-WG, and I will explain later.

[annekat]

NC dropped the age requirement for vaccines from 75 to 65. So many people were trying to get through to MUSC in SC they, including myself were unaware of this change..SC age requirement is 70. Husband and I stopped watching all news because of politics.
What is happening to all the people with compromised immune system that don’t meet the age requirements? I know Alycia in Israel got her vaccine and did not have to meet an age requirement. Are those of you, not in US able to get a vaccine without age requirement? I'm new at this but the only category for 2 or more underlying conditions here in Washington seems to be ages 16-70, but kicks in a little later, after everyone 65 and older. That leaves out a lot of people younger than 16, but come to think of it, I don't think they are recommending the vaccine for people under 16 (correct me if I'm wrong). All of us old folks with underlying conditions are already taken care of by the 65 and older which qualify right NOW. Someone Alysia's age with those conditions would have to wait a little longer, except that she is in a multigenerational household, which would make her eligible now, if she and her kids lived here. Not sure about the age requirement for kids. It's all so convoluted....who thinks these things up, anyway?

[mybag]

I had the Mederna vaccine. My second on Jan 28, 2021. The first was no problem, had rtx infusions on the 7th and 21st of Jan and a Mederna again on the 28th. I had chills and a slight headache that Friday.. Slept most of the day...Feeling fine and Free....almost Hope this helps

[drz]

The rollout of vaccines varies greatly by state and location due to shortage of vaccine. I will get my second shot in 11 days as I am on three high priority lists but my dental staff and optometrist have not been vaccinated.

[Meredith]

My doctor sent me an email - said I should have the vaccine 4 months after my last Rituxan infusion. Last RX infusion was Dec. 18th. I will be getting the vaccine in April now instead of March. Not sure why he wanted me to wait. Have a call with him next month and will ask.

[ST316]

Hi Meredith,

Regarding the waiting period after infusion...from what I understand you need to have an active immune system to react to the vaccine. If your immune system is to low then the vaccine might not be effective. I had 2 vaccines in January Pfizer. I work in a hospital so I was offered and I accepted. My only reaction to vaccine was a sore arm which started 12 hours after injection and lasted for 24hours. I chose to get the 2nd vax in the opposite arm although they said it should not make a difference. Curious to hear what your Dr has to say.

Stay well
Susan

[novastorm]

I have had both Pfizer shots with no side effects. I stopped MTX for 2 weeks for each shot. Here is a good summary of thoughts regarding MTX maintenance with the Covid vaccine.
https://creakyjoints.org/living-with-arthritis/coronavirus/covid-19-vaccines/stop-methotrexate-after-covid-19-vaccine/

[Geoff]

Hello there,
I live in the UK and had the Pfizer jab 3 weeks ago with no ill effects.

Dr Jayne at Addenbrookes said to get the jab done and who am I to argue!!

I've had WG for 13 years and am currently on yearly infussions of RTX.

[Pete]

My wife and I got our second dose of Pfizer vaccine yesterday. We’re so thankful to Ohio State University for the great process to schedule and administer these vaccines.

If you have access to your medical records and appointments on-line, you should take full advantage of it. Cleveland Clinic and Ohio State both use MyChart as their portal. Ohio State notified us a month ago that we could schedule our first dose via MyChart. It was fast and easy. We scheduled our second dose before we left the vaccination center.

MyChart is free and easy to use. I highly recommend that you take advantage of it if it’s available to you. BTW, I got notified this morning that I can get covid vaccine at Cleveland Clinic.

[me2]

I agree. My Chart (and other variations) is a wonderful tool. As I understand, there is a software basis to it that allows other medical services to get access through their own version - possibly with a different name . My primary care doc recently got bought out by a different parent company and I was very happy to hear that she can still access my medical records from the old institution because of this shared software connection. She does not have total access but has most of it- certainly the most relevant things including test results. This meant that I could keep this same doc who already knows me and that I like working with.

[Pete]

Update: I’m almost 48 hours past my second dose of Pfizer. I had some pronounced side effects yesterday — fatigue (I took a two-hour nap yesterday afternoon and went to bed a couple hours early last night), low grade fever and chills, and body aches. It knocked me on my butt. This morning, I feel better, but still don’t have much energy.

On the other hand, my wife, who is taking 50 mg/day of azathioprine for autoimmune hepatitis, had minor soreness at the injection site, and that was all.

[Susan B]

Got my first Pfizer vaccine 2 days ago. Only side effects are a sore arm and maybe a little fatigue.

My last Rituxin was at the end of September, and my rheumatologist advised me to wait 4 weeks after my 2nd dose (in 3 weeks) before getting my next infusion.

Stay well, everyone!

[drz]

We know the vaccines are not 100% effective so how many people become infected after getting both doses. Did any of them get seriously ill so as to require hospital care? Any deaths?

My doctors say I am as protected now a month after my second shot as I will be but they don't know how protected I am. They say my risk should be lower now but they also recommend I keep wearing a mask and avoid crowds and keep a safe distance from everyone.

So how protected are us people with suppressed immune systems after getting both doses? My immune system is suppressed from GPA meds, and weak from diabetes, and elderly age.

[Masha]

Boy oh boy, you said it. Glad I am vaccinated. Something is better than nothing. I need my Rituxin, will get infusion next week. My question is, will the infusion (since we know Rituxin destroys our B cells) knock out the vaccine. I was always concerned about GPA and COVID-19, now I understand my concern should be about Rituxin and COVID. My doctors have told me it is safest for me to continue to shelter. I didn’t like hearing this, but after it sunk in, it is better to know and understand what I am up against. My sugar and blood pressure are up because of an increase in prednisone, due to some simmering. Doctor said not even to consider decreasing prednisone until after infusion. I have been pretty strong this past year, however I really want to see light at the end of the tunnel.

[shankxonline]

Hi Masha - I am in a boat with my Ruxience (Rituximab biosimilar) infusions but couldn't get vaccinated before that. My Rheumy has also asked to keep isolated and keep positive mindset with no Covid vaccine plans for me - at least for now. I think it's the best path for us with depleted B-cells while things around us are still in a very unknown state with a novel bug going around. I take the Covid situation around us (social distancing, masking) as a boon in disguise for what we have been going through..

[gunnyl]

Hi all,

I got the first Pfizer vaccine last week. I'm 4 months out from my last Rituximab Infusion. My doctor ordered a test to check my B Cell levels and will order an antibody test after my second vaccine to see if it was effective.
I'll update you when I have the results.

Sent from my HD1907 using Tapatalk

[Masha]

Shanks,
Thank you so much for responding. I get my Rituxin infusion this week, two months late. I definitely need it, burning legs, bloody crusty nose. My rheumatologist has my prednisone increased. The B cell thing is worrisome. Before COVID my life was going pretty well with GPA. I was all set to socialize until all of my doctors told me my infusions put me at a very high mortality rate if I contract covid. To be honest I was given the numbers, and found myself sleepless with the numbers repeating themselves in my brain. I lack the stamina to tackle any prior projects. To combat the stress I watch old episodes of The Golden Girls. I am reading The Four Winds, about the dust bowl during the depression. Makes me feel like a wuss complaining that I have to stay hunkered down. But I guess it is better to know our enemy and use caution than stick our head in the sand and be reckless.

[shankxonline]

Hi all,

I got the first Pfizer vaccine last week. I'm 4 months out from my last Rituximab Infusion. My doctor ordered a test to check my B Cell levels and will order an antibody test after my second vaccine to see if it was effective.
I'll update you when I have the results.

Sent from my HD1907 using Tapatalk
gunnyl - curious what that B-cell level test is. My doc hasn't mentioned it (so far)

[gunnyl]

shankxonline - My doctors routinely do a T and B Cell screen of my blood. Rituximab wipes out your B Cells. Rituximab is a chimeric monoclonal antibody used to treat hematologic and autoimmune diseases by depleting CD20-expressing B cells. Patients may develop hypogammaglobulinemia following treatment, with some demonstrating failure of B-cell recovery. The true frequency of hypogammaglobulinemia and/or impaired B-cell reconstitution post rituximab is unknown due to the lack of prospective studies in different patient cohorts. The clinical significance remains controversial; some patients have recurrent infections while others are relatively asymptomatic. The aim of this review is to describe the prevalence of hypogammaglobulinemia and the associated risk for developing severe infection, in patients with differing underlying clinical conditions treated with rituximab. This may facilitate classification and prognostication of patients who develop these conditions and identify patients who may be at high risk of developing these complications, including those who may benefit from immunoglobulin replacement therapy." Consequences of B-cell-depleting therapy: hypogammaglobulinemia and impaired B-cell reconstitution | Immunotherapy (futuremedicine.com) (https://www.futuremedicine.com/doi/10.2217/imt-2017-0178))
There are risks with getting Rituximab infusions, my doctors are aware of the risks as am I and they test me every year or two to keep an eye on the ball.
B Cells and Antibodies
B Cells and Antibodies - Molecular Biology of the Cell - NCBI Bookshelf (nih.gov) (https://www.ncbi.nlm.nih.gov/books/NBK26884/)

[me2]

My doctor has talked to me about possibly doing immunoglobulin therapy with me at some point in the future. I'm not sure what criteria he is looking for beyond the fact that I am extremely immune compromised. I do suffer from sinus infections that cannot be cleared up with conventional means - they always return. My ENT says that we might be able to get them bug free but that because of the structures it is likely I would quickly become infected again.

A large part of the reason i have these infections is that my sinuses have been damaged by many years of Wegener's involvement. The damaged structures makes a great home for the bugs and cannot properly clear themselves. I'm only surviving now with very aggressive cleaning with a variety of potions and antibiotics.

I am going to be having surgery soon to clear out scar tissue and deformed bone caused by the WG.
It's not clear how much of my problem is due to reduced immune function or to the damage but the damage can be improved so it's a good place to start.

[Susan B]

I’m 24 hours out from my 2nd dose of Pfizer vaccine. So far I only have arm soreness and a headache which went away with over the counter meds. I’m taking 5 mg prednisone daily and am now 6 months out of my last Rituxan infusion. My rheumatologist is optimistic I’ll get a good response within 2 weeks, advised waiting 4 weeks until my next infusion.

So far, so good. It’s a relief to know I might at least have less severe disease if I do get COVID, and that most people around me will be able to get their vaccines very soon.

[Masha]

First, I must give full disclosure. I followed exactly what you did. Six months out from Rituxin. Got both vaccines. Will get infusion this week, 5 weeks from vaccine. I too thought I reached a safety point. My rheumatologist was completely honest with me regarding B cells, Rituxin and Covid.
Please research this. It is vital you have this information for your safety. Not fun to hear, but necessary.

[Kitekite]

My husband was diagnosed with GPA in 2017. He has had two doses of moderna and seems he is doing ok. He had no any reaction or side effects. I don’t have GPA. But I had allergies with the first dose and high fever and pain over whole body with the second dose.

[gunnyl]

I'm really disappointed in all of the responses I've gotten from doctors regarding the vaccines. I already replied to this about my experience with the vaccines. I got both, had zero T-B Cells so I got an antibody test and developed zero antibodies.
I have been asking my doctors and the doctors from the Infectious Disease departments of two hospitals and they all say I should get the booster. I never developed antibodies from the two vaccines which is a full dose yet they want me to get a booster. I had another infusion in May so I am 3 months out from infusion. Without checking the T-B Cell screen they blindly want me to get the booster.
I am convinced that they haven't got a clue with regard to these vaccines. Especially as they relate to WG patients on Rituximab. My wife has Behcets and takes MTX and she actually developed antibodies and so she got the booster which made perfect sense.

[Meredith]

Had Rituxan approx. 8 months ago - had the pfizer vaccine. Doctor checked for antibodies, none. Had me wait 2 months (I was 2 months late getting my rituxan treatment) had the Moderna vaccine. Had a blood test 2 weeks later. No antibodies. I will not get the 4th vaccine (2nd dose of moderna). I am disappointed. Will keep wearing my mask but have decided to stop worrying. Have trips planned next summer in 2022 and will be going. I am not going to lock myself in my home for the rest of my life.

[J@$0N]

Ask the RA about Regeneron if you get COVID.. It helped me tremendously

[Susan B]

First, I must give full disclosure. I followed exactly what you did. Six months out from Rituxin. Got both vaccines. Will get infusion this week, 5 weeks from vaccine. I too thought I reached a safety point. My rheumatologist was completely honest with me regarding B cells, Rituxin and Covid.
Please research this. It is vital you have this information for your safety. Not fun to hear, but necessary.

It’s true that caution is warranted. I got my booster 2 weeks ago, 5 months after last Rituxan, and my rheumatologist ordered antibody testing. Unfortunately, I came back negative for COVID antibodies.

The more data we get, the more we know how many patients on Rituxan have the same issue. Until then, stay safe everyone!

[Susan B]

I also have not developed antibodies even after a booster, (testing was done only 2 weeks after). My rheumatologist did suggest I could get another booster in 6 months, depending on the course of the pandemic here. Everything with COVID is still pretty new, so it’s not easy to guess what the best course of action is. The good news is that there will be tons and tons of data to work with.

[J@$0N]

I also have not developed antibodies even after a booster, (testing was done only 2 weeks after). My rheumatologist did suggest I could get another booster in 6 months, depending on the course of the pandemic here. Everything with COVID is still pretty new, so it’s not easy to guess what the best course of action is. The good news is that there will be tons and tons of data to work with.

I had my antibodies tested after I had COVID. I contracted the virus literally 5 months after my last infusion and was a month away from the next. I was given the monoclonal antibodies and recovered from the virus. After my infusion and almost 2 months after the virus, i had my antibodies tested and have a substantial amount of them. I feel like a broken record and this will probably be my last post on this as I feel I'm being pushy. I really don't want anyone to suffer from this or the reaction our conditions may cause the the MRNA shot. I hope there is a consideration to discuss with your Drs about this vs the MRNA especially while on Rituxan.

God is Good,

[NatriceRomeo]

I had a significant bout of Covid and am still dealing with the repercussions in November 2020. I did not have Rituxin for 10 months. Got the Phizer vaccine. I did not develop any antibodies to the actual vaccine or to the virus. I’m fairly disappointed. Stupid
Body!
Natty


Sent from my iPhone using Tapatalk

[Chadwyck]

I just came here to share the good news. I got my third Covid shot (Pfizer) and I'm perfectly fine. I was hoping everybody else was going to say the same, but, we're all different. I was nervous at first, thinking that this could be the potential trigger of a flare to happen but because 2 of my doctors advised me to get the shot, I didn't hesitate. Only the first one was discomfort for the first 24 hours. The second one was like getting the flu shot. The third one, I was so busy talking to the lady about side effects I didn't even feel the needle go in. All good news. I had to leave them with a funny joke of the day, however! I said, "If you don't give me the Pfizer like I'm requesting, I want to speak to your SuperPfizer!" LOL Hope everybody is doing well.

[Peter Marsham]

Hello all,

after two shots of AZ in March and July, I asked my rheumy about a booster shot, and he heartily agreed that it was for the best - with one stipulation. I’m on 2000mg Mycophenolate daily, which has a bioavailability half life of about seventeen hours. His suggestion was that I halt the mycophenolate for one week, starting a day before the booster shot, in order for some antibody development.

I had the Pfizer booster a week ago, and start back on mycophenolate tomorrow. The only side effect of the booster was a very sore arm for a day or so, and I haven’t noticed any side effects of halting the immunosuppressants for a week.

I know that every individual case is different, but if you are questioning the booster or the main COVID shots, perhaps discuss halting your IS course for a short amount of time when you get the vaccines. Obviously, please DO NOT go off your drug courses without talking to,your specialist first, I only presented this as a possible alternative in some cases.

[novastorm]

I may be an outlier here, but figured I'd share my good news. I am on maintenance 20 mg of Methotrexate only, not Rituxan. I had first 2 Pfizer shots in Jan/Feb, and got a Moderna booster in August. For all shots, I skipped 2 weeks of dosages after the shot. In October, I had an antibody test that showed strong antibodies (+20).

[John S]

This is interesting https://www.nbcnews.com/health/health-news/fda-clears-astrazenecas-covid-antibody-treatment-immunocompromised-rcna8130

[Masha]

John, this is great news for those of us on Rituxin. My rheumatologist notified me yesterday that she is trying to get it for me. We will have so much more freedom. I find myself fearful of so many things. My husband has to have outpatient procedures done at one of our large downtown hospitals. I can’t wait in the car because it is in an unsafe parking garage. Means I have to go into the waiting room. I will just mask up and pray. Our 85 year old friend, who is taking care of his wife offered to drive, but I just can’t see it. I will have to make this trip twice, next week and again mid January. Whenever I have been the driver it has been in a nice suburb, I park by the door and stay in the car. Wegener’s without B cells is a bad match with Covid.
Pray.

[drz]

I read some studies suggest it might not help much with Omicron version which is now the dominant source of infections. It may not be as deadly or severe but when it results in a massive increase in numbers of people infected the death rate will remain same for our country or even increase as hospital get overwhelmed by sheer numbers. For us vulnerable people this is bad news.

[Pete]

It's been an interesting week. Late last week, I asked Dr VillaForte if I could get my Covid booster now rather than waiting until late February (a month before my next infusion). She wanted me to get an anti-spike protein antibody test first, so I did. This is the test for Covid antibodies. My result was "no detectable antibodies". I got the Covid booster a few days ago (with Dr VillaForte's belated blessing).I had a reaction similar to my second dose of vaccine. (All I've taken so far is Pfizer.) Low-grade fever, muscle aches, and fatigue that lasted about 24 hours.

I had both doses of Pfizer vaccine in February. I had rtx infusions in March and September. Two months after the second rtx, I had no Covid antibodies.

As I look into the future, it looks like I'll have to strike a balance between wiping out my immune system and maintaining some degree of immunity to Covid and the flu. Any thoughts or similar experiences?

[MaxD]

It's been an interesting week. Late last week, I asked Dr VillaForte if I could get my Covid booster now rather than waiting until late February (a month before my next infusion). She wanted me to get an anti-spike protein antibody test first, so I did. This is the test for Covid antibodies. My result was "no detectable antibodies". I got the Covid booster a few days ago (with Dr VillaForte's belated blessing).I had a reaction similar to my second dose of vaccine. (All I've taken so far is Pfizer.) Low-grade fever, muscle aches, and fatigue that lasted about 24 hours.

I had both doses of Pfizer vaccine in February. I had rtx infusions in March and September. Two months after the second rtx, I had no Covid antibodies.

As I look into the future, it looks like I'll have to strike a balance between wiping out my immune system and maintaining some degree of immunity to Covid and the flu. Any thoughts or similar experiences?

I got my first two vaccines in April. The spike antibody test in late May was negative - no detectable antibodies. I got a booster in November, followed by a spike antibody test in December. Again negative! I've asked my doc to look into Evusheld, the recently announced AstraZeneca monoclonal antibodies for pre-exposure. Has anyone on this forum been told if they're eligible for Evusheld, and had anyone got the Evusheld shots? Thanks!

[Pete]

MaxD

When did you get rtx? Or are you taking something else?

[MaxD]

@MaxD (https://www.wegeners-granulomatosis.com/forum/member.php?u=8219)

When did you get rtx? Or are you taking something else?

Rtx 500mg in early March. I get one infusion annually.

[MaxD]

@MaxD (https://www.wegeners-granulomatosis.com/forum/member.php?u=8219)

When did you get rtx? Or are you taking something else?

Rtx 500mg in early March. I get one infusion annually. No other medication.

[Masha]

I get 1000 mg Rituxin 2 x year. Had all vaccines and booster, no antibodies. Evusheld is made to order. May not protect against latest Omicron, but the vaccines aren’t stopping it either. My rheumatologist has already emailed me that she, like other doctors, are trying to get Evusheld. It is said to give us 77% safety. Rituxin has saved my life, not giving it up.

[drz]

There are new meds to treat Omicron but they will be in short supply. There are efforts increase production of these drugs as they rush to make them available as they will be critical for us elderly vulnerable people. The flu and Omicron are over filling many hospitals already which is not good for everyone.

[gilders]

Hardly left the house for almost 2 years and today I received an alert on my phone from NHS Track and Trace stating that I have been in close contact with someone who has tested positive for Covid.
It gave the date, which was Friday just gone. This was one of the VERY few times I've left the house and guess where I went.........the vaccination centre to get my 4th jab. Typical :rolleyes1:
I've not shown any antibodies from previous jabs and as it takes around 14 days from having the jab to create antibodies, it looks like if I've caught it from this positive close contact I'll be fighting it without any protection.

[Pete]

Here’s hoping that you’ve only been exposed and won’t get it. Hope you have a good year coming up.

[gilders]

Thanks Pete and a Happy and Healthy New Year to you and your family.

[Masha]

Gilders, I am praying for you. What a way to start the new year.

[gilders]

Thanks Masha
The only person I was near to was a St. John's ambulance member who had been asked to watch over me due to previous bleeding problems after a pneumonia vaccine. She was wearing her mask, so hopefully I'll be fine.
Hope you have a happy and healthy year ahead.

[Pete]

Well, I guess rtx works really well for me, but at the cost of immunity to Covid. I had a Covid antibody test today and have no detectable antibodies. I got the first two doses of Pfizer last February. I had two 500 mg dose of rtx in March and September. Had first antibody test in early December followed a few days later by a Pfizer booster. Now, two months later, no antibodies detected again.

Unfortunately, I’m between PCPs as mine retired a few days ago. I need to talk to the new PCP and learn Ohio State’s Evusheld policy. In the meantime, I’ll continue maintaining a very low profile and wearing an N95 mask whenever I’m in a public indoor space. And so it goes.

[Susan B]

I did not have detectable antibodies after my first 2 vaccine doses, either. An article from a few months back found that something like 25% of patients on Rituxan did produce antibodies after their third dose (I am not entirely sure about that number—I couldn’t find the article, so take with a grain of salt.)

Anyway, wound up getting COVID about 1 month ago. I contacted my rheumatologist before my test result even came back. He saw it the next morning and I got monoclonal antibodies that same day—sotrovimmab, which is thought to be effective against Omnicron. I am incredibly lucky to get my care (and work at) a teaching hospital, and fortunately I recovered without severe illness and without giving it to any of my close contacts.

We need to be careful, but there’s plenty of hope, too. Stay safe, everyone!

[drz]

I had been vaccinated with two doses before I got my RTX treatment and did develop antibodies from the vaccination. But my doctor says there is not point in getting a booster shot now since i would not get any response to the booster. The vaccinations did cause a serious flare of my GPA so I have lot of reservation about getting a booster anyway. The flare caused damage to my lungs and shortness of breath. I had been in drug induced remission for 10 years before the flare.

[Susan B]

I had been vaccinated with two doses before I got my RTX treatment and did develop antibodies from the vaccination. But my doctor says there is not point in getting a booster shot now since i would not get any response to the booster. The vaccinations did cause a serious flare of my GPA so I have lot of reservation about getting a booster anyway. The flare caused damage to my lungs and shortness of breath. I had been in drug induced remission for 10 years before the flare.

I’m sorry the vaccine caused you to have flareups with resulting tissue damage. It would be extremely valuable to know how often this happens with any vaccine. Definitely an important consideration. Thanks.

[drz]

I’m sorry the vaccine caused you to have flareups with resulting tissue damage. It would be extremely valuable to know how often this happens with any vaccine. Definitely an important consideration. Thanks.

Local doctors were the ones who surmised i was having a flare of GPA when i saw them for initial symptoms of the flare. They told me several other people had also experienced a relapse in other types of autoimmune disorders after getting vaccinated. It seems reasonable to assume that a vaccination designed to stimulate the immune system into producing antibodies might also mess up a remission of an autoimmune disorder that was kept in check by suppressing the immune system.

[Pete]

I was fortunate (and politely persistent enough) to receive Evusheld today. My PCP’s office connected me to an infectious disease specialist who listened to my story of three vaccinations, two rtx treatments, two negative antibody tests, GPA, and being 75. The next thing I know, I got a phone call yesterday from OSU asking me when I could come and get it. I see Dr VillaForte next month and will ask about another antibody test to see if Evusheld works. I think I’ll request another antibody test in June to see if rtx will clobber the multiclonal antibodies.