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Thread: Covid vaccins and WG

  1. #71
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    Default Re: Covid vaccins and WG

    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.

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  3. #72
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    Default Re: Covid vaccins and WG

    Iím 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. Iím taking 5 mg prednisone daily and am now 6 months out of my last Rituxan infusion. My rheumatologist is optimistic Iíll get a good response within 2 weeks, advised waiting 4 weeks until my next infusion.

    So far, so good. Itís 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.

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  5. #73
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    Default Re: Covid vaccins and WG

    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.

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  7. #74
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    Default Re: Covid vaccins and WG

    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 donít have GPA. But I had allergies with the first dose and high fever and pain over whole body with the second dose.

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  9. #75
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    Default Re: Covid vaccins and WG

    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.

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  11. #76
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    Default Re: Covid vaccins and WG

    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.

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  13. #77
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    Default Re: Covid vaccins and WG

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

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    Default Re: Covid vaccins and WG

    Quote Originally Posted by Masha View Post
    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.
    Itís 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!

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  17. #79
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    Default Re: Covid vaccins and WG

    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 itís 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.

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  19. #80
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    Default Re: Covid vaccins and WG

    Quote Originally Posted by Susan B View Post
    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 itís 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,

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