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Thread: Covid vaccins and WG

  1. #21
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    Default Re: Covid vaccins and WG

    Quote Originally Posted by NatriceRomeo View Post
    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


    Sent from my iPhone using Tapatalk
    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.
    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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  3. #22
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    Default Re: Covid vaccins and WG

    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.

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  5. #23
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    Default Re: Covid vaccins and WG

    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.

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  7. #24
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    Default Re: Covid vaccins and WG

    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
    Last edited by me2; 12-13-2020 at 02:46 PM.

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  9. #25
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    Default Re: Covid vaccins and WG

    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
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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  11. #26
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    Default Re: Covid vaccins and WG

    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.

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  13. #27
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    Default Re: Covid vaccins and WG

    (Edit: Whoops—see below.)
    Last edited by Susan B; 12-14-2020 at 05:57 AM.

  14. #28
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    Default Re: Covid vaccins and WG

    Quote Originally Posted by NatriceRomeo View Post
    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


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

  15. #29
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    Default Re: Covid vaccins and WG

    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.

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  17. #30
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    Default Re: Covid vaccins and WG

    Hey Sixto thanks for reading all that time. Welcome! We would be pleased to know your experience, thanks for sharing!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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