• Changing from Vivgart to ULTOMIRIS

    Posted by Mark Cox on January 26, 2025 at 3:21 pm

    Has anyone recently changed from Vivgart to ULTOMIRIS…

    3 years ago I started out with IVIG after being diagnosed with MG and it worked really well except for the migraine headaches. After two more infusions I went to Vivgart… It worked great also but would only last 40 days into a 50 day infusion cycle and my MG symptoms started to return… I’m 64 and still travel a lot for my job… It was rough getting through the airports in the last 10 days of my Vivgart cycle and insurance won’t pay for sooner cycles so I recently changed to ULTOMIRIS after a rigorous preparation period of meningitis shots, insurance run arounds etc… I’m in my 53rd day of a 60 day infusion cycle and starting to feel some of my MG vision, swallowing and body issues flaring back up similar to Vivgart. I have felt weaker through the cycle especially in the legs in the first 30 days with memory issues, also picking up more colds and flu’s including Covid… I told my neurologist of these things and he says to give it time and another cycle as it takes more time for ULTOMIRIS to set in according to his other patients…

    I read the same thing in a forum or somewhere that ULTOMIRIS takes longer to set in and If he hadn’t told me this I would have turned tail and went back to Vivgart already… And probably still will if the next cycle feels the same… I’m also aware everyone’s bodies react differently so I’m certainly not throwing rocks at either medication…

    In short I was reaching out to the forum to see if anyone else had switched from Vivgart to ULTOMIRIS and experienced any of the issues I’ve been experiencing…

    Thank you..

    Mark

    Debbie sandwra replied 1 day, 13 hours ago 6 Members · 8 Replies
  • 8 Replies
  • Keith R Anderson

    Member
    January 28, 2025 at 2:27 pm

    I haven’t changed yet. My neurologist brought it up but I’m staying with Vyvgart for now. I’ve been able to use the 4 injections in a month and then 2 months off. I do get a bit tired toward the end of the 60 days but I complement this with one 60 mg Mestinon which seems to work. I’m a bit older than you (81) but I am able to play golf twice a week. The MG is being accompanied with spinal stenosis and bad hips. Isn’t aging fun.

    • Mark Cox

      Member
      January 28, 2025 at 6:24 pm

      Thanks Keith, like you I’ve enjoyed Vyvgart, only wish it lasted a bit longer to get me through the infusion cycle.

      Not only did my insurance deny shorter infusion cycles but my neurologist told me the FDA wouldn’t approve Vyvgart for less than 50 day cycles in concern to potential skin rashes…

      Hopefully they’ll find a way to improve Vyvgarts strength for the full 50-60 day cycles.

      Thanks for sharing

  • CAPacheco

    Member
    January 28, 2025 at 5:24 pm

    After experiencing an MG crisis (hospitalized and treated with Plasmapheresis), I had IVIG for 2 months, then I was infused with Vyvgart. Had 2 rounds (4 weekly infusions) in 2023. The first went very well and I started feeling much better, strength and stamina restored, no more double vision or wonky eyes. About 2-1/2 weeks before the second round was scheduled symptoms returned. Less than 3 weeks after round 2, I experienced all my symptoms returning. My new neurologist recommended Ultomiris, which I started in April 2024. I did very well with improved strength, etc. but after my last session I noticed it’s not “lasting” so I am scheduled to get an increase in the dosage. Hopefully that will help. Long story short — I did much better with Ultomiris than Vyvgart. I’ve remained on daily Pyridostigmine throughout but with Ultomiris, I have been able to reduce the dosage. Small miracles. Only real issues I’ve had after Ultomiris infusions are severe headaches for about 2 days and breakouts – pimples, just like a teen again. 😕

    • Mark Cox

      Member
      January 28, 2025 at 6:15 pm

      Excellent information, thanks for sharing…

      • Debbie sandwra

        Member
        February 4, 2025 at 6:28 pm

        I started cellcept knowing Vyvgart was not lasting long enough. Unfortunately it takes 8-12 months to work. Anyone with issues start it now. We all know how quickly the years go. So the combo of cellcept and vyvgart have changed my life. I do the shots 4 weeks on and 4 off. And now I can manage. Without the cellcept Vyvgart stopped working. Ultimaris was a big mistake for me. I ended up in the hospital because it simply did nothing for my symptoms. I hope this helps

  • greynold

    Member
    January 28, 2025 at 6:16 pm

    I was on Vyvgart infusion for nearly a year. It worked well for me but it only provided MG symptom relief for 14 days beyond the last infusion. I was able to get Vyvgart Hytrulo injections that take less than 20 minutes to administer. The only thing I would offer to you is that Ultomiris, along with other new treatments require blood lab tests and preventive vaccinations, some a little alarming, before and during treatment that made me re-consider going to another new treatment. I did stay with Vyvgart Hytrulo and have felt improvement with MG Symptom relief as I have had more than a year of treatment cycles. Having had negative side-effects from other prescription drugs most not related to my MG treatment, I’ve been reluctant to experiment with newer classes of MG drugs until my Neurologist feels comfortable prescribing them for me.

    Good luck,

    greynold99

    • Mark Cox

      Member
      January 28, 2025 at 6:46 pm

      Thanks for sharing, It’s taken me close to a year to follow my neurologist recommendation of ULTOMIRIS just for the same reasons that you mention such as require blood lab tests and preventive vaccinations, some before and during treatment that caused most of my hesitation…. I wish I had heard of Vyvgart Hytrulo before changing to ULTOMIRIS to at least give it a try… Thanks again for sharing as I’ll keep the forum updated on my ULTOMIRIS journey in the months to come…

  • staytuned

    Member
    February 2, 2025 at 8:48 am

    Great feedback all !

    I’ve heard that some MG patients have entered remission due to changes in diet / nutrition. Switching to whole foods (vegan?) helps combat MG better than a normal diet that incorporated processed foods. Can anyone share their experience ?

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