• Vyvgart vs Ultomiris

    Posted by douglas-manning on November 17, 2023 at 10:38 pm

    I’m currently on a biweekly cycle of plasma Apheresis followed by an infusion of Soliris. My neurologist is suggesting I might be a good candidate for Vyvgart, but I am wondering if Ultomiris might be better since I have some success with Soliris. Has anyone had Ultomiris infusion therapy? How are you doing?

    Juggernaut replied 1 day, 18 hours ago 6 Members · 5 Replies
  • 5 Replies
  • Lou DeYenno

    November 22, 2023 at 2:34 pm

    I’ve been receiving ultomiris for 24 weeks now (8 week cycle) and it appears to be working fine! I also take 10mg of prednisone and 180mg slow acting Mestinone daily (1x). I was on IvIG for about 2.5 yrs and it became ineffective…I’ve also had plasmapheresis during a recent flare. My symptoms have stabilized and have been very infrequent with Ultomiris… I am getting my next infusion on 11/24/23…I’m praying for remission status!

  • charles-karcher

    November 22, 2023 at 2:41 pm

    I was on Soliris for 2 1/2 years. I switched to Ultomiris approximately 1 1/2 years ago. Ultomiris works just as effectively for me and has the advantage of being an 8 week interval between infusions. I do not understand the combo of plasmapheresis and Soliris. My neurologist put me on Soliris after plasmapheresis would only last 8-10 days and I would end back in the hospital.

  • jerry-johnson

    November 22, 2023 at 4:38 pm

    I just started Ultomiris. The Vyvgart stopped working on me after about a year and a half. The Ultomiris seems to be working very well. While I was getting my first infusion of it, my wife said she could actually see the life coming back in me. When it was finished my eyelid no longer drooped. Next day I could chew an entire me without any trouble. Two weeks later still no symptoms. Now we wait eight weeks until next infusion. Waiting to see if it lasts. I’ll have to let you know on it.

  • thomas

    November 22, 2023 at 4:44 pm

    I have been taking soliris for almost 2 years and it has been working well. Mg is still there but mostly in the background. My doctor just switched me to ultomiris ( infusions every 2 months instead of bi-weekly), my first dose was this Monday and things seem to be going ok. I asked my doctor about vyvgart. He said nothing scientific, but his feeling was patients complained less about MG with soliris and ultomiris than vyvgart. We are all different so one drug might not work so great with the next person.

  • Juggernaut

    November 27, 2023 at 8:44 am

    I was first diagnosed with MG 4 1/2 years ago. I had an exacerbation beginning in mid-February of this year and lasting until my first Ultomiris infusion July 10th.<div>


    I recently had my 4th infusion and have been able to completely eliminate my other MG medications – 120mg of Mestinon x 4 daily and 10mg of Prednisone daily. I am now symptom free.

    Ultomiris has been a life-changer for me and I wish you the same results.


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