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    • #16452
      Douglas F Young
      Participant

      Hi all, new member, 1st post.

      I have been vaccinated for five months now (got a head start at the infusion center). My dr. got me an antibody test last week that came out negative,  which disappointed me. I’ve been on cellcept, prednisone and more recently Soliris, so plenty of immunosuppressants, but a pretty normal regimen for MG.

      When my dr. ordered the test, hesaid his advice for me going forward would not change regardless of the outcome: mask and distancing when out.

      The literature is pretty uniform in saying that these tests have not been clinically relied on, but I can’t help believe that a positive result is more desirable clinically than a negative one.

      Has anybody else had this test? What was your experience?

      Thanks for your contribution.

      Doug

    • #16481
      Marguerite Thibeau
      Participant

      As if our MG and other autoimmune issues weren’t enough to deal with! I was told we would need to be off immune suppressants for 2 weeks before the vaccine ( for each injection). Tough to do. As I also have MCS vaccines send me into a flare and hospitalization, so I can’t risk them. I really wish I could, because I could be part of the extended family again. My granddaughter is too young for vaccination, so we protect the 2 of us.

      With the new variants come a whole new level of concern. The CDC has decided to only count the Delta stats for death or hospitalizations. If someone is protected by vaccine, cases are generally milder. But with 1000 times the viral road it will spread easily, and not be counted by many tallies. Masachusetts has had 4000 cases with 79 deaths. I get my infusions in Massachusetts. Cases are up 46% last week.  Beta, Gamma, Delta, Delta Plus, Lamda, Alpha, Epsilon, etc to watch out for.  We are chosing to celebrate life and go back to strict precautions. The vaccines definitely cut risk to 66% percent or so with the new varieties, and cases are milder. But changes keep coming because too many aren’t taking it seriously. We must! Most MG patients can get the vaccine, do your best to research your situation as well as taking to your doctors.

      I’m not going out more than I have to. Humidity is a big issue for me now, so I travel with oxygen and may have to switch to a vented (exhaust/air out only) N95 mask.  Some hospitals ae going back to masks for all. Be safe, and enjoy each day. Find things to be grateful  for each day, focus on the positive. If only that we are living in 2021 and not the middle ages with the Black Plague!

      • #16506
        Douglas F Young
        Participant

        Marguerite, when you were told to suspend immunosuppressants for two weeks before vaccination, was that by a doctor, a fellow patient or whom? It seems very logical, but I have not had any of my doctors even entertain the idea.

        Ironically, the country has been told all along that the risk of side effects from the vaccination is far outweighed by the risk of covid.  You will have to convince me that that same argument would not apply to the risk of a 2nd vaccination.

        Doug

      • #17066
        Kathy
        Participant

        I had the antibody test after 2 months from my second jab. I’m on Mestinon. My levels were very high still.

        • #17067
          Douglas F Young
          Participant

          Kathy,  that makes sense; mestinon treats symptoms of MG, but it is not an immunosuppressant. Many of us take cellcept, imuran, prednisone or other immunosuppressant therapies such as Soliris or rituximab,  which unfortunately seem to discourage our systems from making the antibodies in response to the vaccine.

    • #16495
      Carrie McDade
      Participant

      I was taking 20 mg Prednisone on Jan 30 and Mar 4 when I received the Pfizer vaccines. My recent Covid antibody test was negative, no antibodies. Docs have told me to continue stricter measures: masking, social distancing, stay away from kids and crowded areas. Ok to visit with a few fully vaccinated people indoors.

    • #16521
      Marguerite Thibeau
      Participant

      Douglas, it was from a conversation with one of my doctors as something to consider. I would love to get the vaccine, but haven’t tolerated them in decades.  I had to get some for Soliris and each landed me in the hospital and weak for months. This is not related to MG, but my other auto-immune issues. If you tolerated the 1st one, then perhaps your doctor can discuss this with experts, perhaps epidemiologists and get you safe. I envy that.  I have a neighbor I met when she was moving out to senior housing. She had MG! We were so surprised to find each other. She got sick with the 1st shot, and delayed a few extra weeks until she and her doctor felt she should get the second as Covid was making the rounds in her building. She did fine with the 2nd shot and has immunity, but still is cautious with Delta increasing by 60% in our area.

      I hope you and your doctor can come up with a plan that works for you. We are all snowflakes within this disease and need to make decisions with experts we trust. Be safe.

    • #16524
      Douglas F Young
      Participant

      Thank you, Marguerite. I had both Pfizer shots in late January and early February.  I had exactly zero response to both shots,  not even a sore arm. I could have been given a placebo. The antibody test last week was also zero. I am scheming a two week vacation from prednisone and cellcept,  followed by a J&J vaccine the day before my Soliris infusion. I ABSOLUTELY AM NOT RECOMMENDING THIS TO ANYONE ELSE!! This is uncharted territory but I am much more concerned about stopping the immune suppression than getting another shot. I’m frustrated, and I think the medical community feels it has bigger fish to fry than the immune suppressed population.

       

    • #16552
      Marvin Yudenfreund
      Participant

      Like Doug Young, I’m a new member and this is my first post.  I’ve had gMG for 2 years, and my treatment consists of daily Mestanon and Retuximab infusions every 6 months.  My last Retux infusion was a year ago.  With the approval of my neurologist, I passed on the scheduled January infusion because I wanted as much time as possible to ellapse before my Covid shot.  Received 2 Moderna shots, late Jan. & early Feb.  After 2 weeks, I had a blood test and got a positive antibody titer for Covid.  It works!

      My friend takes Retux for rheumatoid arthritis.  She didn’t halt her infusions.  She got her 2 Moderna shots; after 2 weeks she tested negative for Covid antibodies.

      Hope this helps all who seek to acquire Covid immunity.

      • #16557
        Douglas F Young
        Participant

        Thanks, Marvin, that seems to be consistent with other people’s experience. Mestinon is not an immunosuppressant, but everything else I take is. I didn’t know Retux was delivered on such an attenuated schedule. I get Soliris, another monoclonal antibody, bi-weekly. How does the Retux seem to be working for you?

        Doug

         

         

        • #16558
          Douglas F Young
          Participant

          BTW, The CDC’s Advisory Committee on Immunization Practices is scheduled to discuss additional doses for immunocompromised individuals during its meeting on July 22.

        • #16562
          Marvin Yudenfreund
          Participant

          My last Retux infusion was last July.  My neurologist ordered a CD 20 count on May 24, and it was still very low, indicating that the Retux was still working.  I guess I’m pretty lucky to have received a strong autoimmune response to the Covid vaccine, while maintaining excellent CD 20 suppression.

        • #16563
          Douglas F Young
          Participant

          Sounds like you might be MuSK antibody positive; I’m AChR. I’m still going to try to get another vaccine after a short immunosuppression break.  Thanks

    • #16561
      Bob Wilhelm
      Participant

      I have been on Soliris for about 17 months and had my Phizer COVID vaccine in late January and early February. No mention of an antibody test from my Dr. I guess I should be proactive and ask.

      • #16564
        Douglas F Young
        Participant

        I think you will have to ask for it. Nobody really knows what clinical significance the results have, so the test will not likely change their medical advice one way or another. But I’d want to know anyway.

    • #16707
      Douglas F Young
      Participant

      SOME POSITIVE WORD FROM THE CDC ABOUT THE IMMUNOSUPPRESSED AS REPORTED ON CNN FRIDAY AUG 6:

      Internal discussions at the US Food and Drug Administration have centered around an early September timeline for laying out a strategy on Covid-19 vaccine booster shots, a Biden administration official told CNN.

      The strategy would apply for all vaccinated people. A decision for those who are immunocompromised and face greater risk from the virus is expected sooner, the official said Thursday.

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