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Thread: Coronavirus and GPA

  1. #121
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    Default Re: Coronavirus and GPA

    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.

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  3. #122
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    Default Re: Coronavirus and GPA

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

    https://apnews.com/89d963958b042cc921e64ab3eff5a74d
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  5. #123
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    Default Re: Coronavirus and GPA

    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.

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  7. #124
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    Default Re: Coronavirus and GPA

    [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.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 06-17-2020 at 07:50 PM.
    Anne, dx'ed April 2011

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  9. #125
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    Default Re: Coronavirus and GPA

    @richard052018

    Where did you get your mosr recent infusion? Iím going to Cleveland in September.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  11. #126
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    Default Re: Coronavirus and GPA

    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.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  13. #127
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    Default Re: Coronavirus and GPA

    Glad to hear youíre on the mend. Hope it continues.

    It seems Israelís politics are as messed up as ours in the USA...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  15. #128
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    Default Re: Coronavirus and GPA

    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!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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  17. #129
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    Default Re: Coronavirus and GPA

    Itís 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.


    Sent from my iPhone using Tapatalk

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  19. #130
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    Default Re: Coronavirus and GPA

    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 couldnít 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 arenít 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!

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