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  • Hope for those who have not responded initially

    Posted by bli-shame on June 11, 2023 at 10:11 pm

    I received two treatment cycles of VYVGART with no response, and was discouraged to say the least. Approximately two weeks after my last infusion, and while I was in the throes of this disappointment, I began to respond and went into remission. There is a subset of people who have received VYVGART and have had a late response .  I was such a person.

    Please don’t lose hope.

    Deleted User replied 2 weeks, 2 days ago 5 Members · 4 Replies
  • 4 Replies
  • david-s

    June 13, 2023 at 11:41 am

    Thanks Bill for your post – update.

    I will be starting Vyvgart mid July and am hopeful.


  • nan

    June 19, 2023 at 1:34 am

    For me, most of the positive effects of  Vyvgart didn’t manifest until a few days after the fourth infusion of the first round. It was incredible. I have tried Cellcept and Imuran without success and have been taking methotrexate for the past two years without much symptom relief. Vyvgart is even better at treating my severe generalized seronegative MG symptoms than Plex.

  • delia-hernandez

    June 27, 2023 at 8:39 am

    Lots of encouragement to everyone who suffers from a chronic illness. It’s a daily battle, but we must continue to face it with resilience and not give up.

    • Deleted User

      Deleted User
      September 8, 2023 at 10:04 pm

      i was a late responder to vyvgart. My first cycle was terrible, i had worsening during the 4 weeks of infusions. I wanted to give up but my neuro convinced me to try a 2nd cycle. Again MG symptoms were worse and much worse than the first cycle. I had already decided to move on to another treatment then 1 month after 4 infusion, i realised i felt better. i thought great, MG is subsiding a bit like it had previously, usually only lasting a week or 2. Each day I kept getting stronger and at some point i could walk without exhaustion. my neuro scheduled another cycle but the gap was about 8 weeks after and for some reason the next infusion cycle also was 8 weeks later. i was feeling great at this point and decided to stay with 4 weeks infusion, 8 weeks off. Eveything has been perfect until my last infusion cycle. first 3 infusions had worsening that lasted a bit longer than usual and with the 4th i have had worsening for 2 weeks. I am still not sure i am fully recovered but i think i am.

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