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CommunityMemberad0312
Has anyone been on Rystiggo?
CommunityMember7885f1 Member
my experience has not been good. Diagnosed April 2024, weakness, blurry vision, ptosis. started on vyvgart, minimal response after 4 treatment cycles but still, disease was new and not too impactful. i had not had MG severe enough to keep me from working or functioning. Was even exercising (i’m very athletic-swim bike run) and while i had to shorten duration and distance of workouts, i could still do it. mestinon helped but no where near ‘cured’. But, because i still had symptoms (esp double blurry vision) my dr recommended we switch to Rystiggo. started that in October, week by week symptoms worsened and by week 2, had headaches, dizziness, ringing in ears. Told dr and he added 1 mg steroid Pre-dose. finished cycle (6 weeks), felt worse than ever with MG and now had added joy of headaches daily. even after 3 weeks of off-weeks. i asked not ro continue rystiggo but had thymectomy scheduled for mid december. so we did 5 IVIG tx and had surgery 10 days later. did ok post op- never noticed a significant improvement with IVIG but not the continued decline i had been experiencing since October, and had no surgical breathing issues so IVIG did its job. Now, early January, i sat with neurologist and we debated ultimaris vs ivig going forward. In order to buy time to do meningitis vaccines, he put in for insurance approval for IVIG at home. Insurance was dragging g feet and i was feeling super sluggish and icky, so, in order to get some sort of therapy while we were waiting, and i already had approval for Rystiggo, he said to do that again a couple more times until ivig approved. So, Sunday i had Rystiggo. I was feeling no real negative effects and on Tuesday, was having an unusually good day! Then Wednesday AM, did a brief Peleton workout (something i try to do a few times a week when feeling good) and went to work. Around 9:30 am, felt nauseous, then vertigo hit, threw up, and within an hour I couldn’t stand without getting faint and nauseous. Drank some coke, thinking it would pass but the muscle weakness got so bad i couldn’t sit upright or move without shaking with the effort. Worst weakness o e ever felt since this nonsense started. Went to hospital, Kept ad inpatient for 4 days of IVIG. The vertigo after first day is replaced by headache that i still have. I truly believe that for me, rystiggo causes exacerbation of my MG and gives me additional migraine issues. Definitely not al all a helpful therapy FOR ME. Others may do great but i think it did the opposite of what it was supposed to do in my case. If you read through this novel (sorry about that) I’d curious to hear the experiences of others
Jodi Enders Moderator & Contributor
I'm glad to hear you went through the thymectomy and that the IVIG treatment has helped maintain stability post-operation. You've endured a lot throughout your treatment, and it's completely understandable to feel discouraged, especially with the additional symptoms. I’m truly sorry to hear about the severe weakness and vertigo. It’s frustrating when a treatment doesn’t work as hoped.
If others have experienced similar situations with Rystiggo, I hope they share their stories as well. Headaches are one of the most common side effects of Rystiggo. Have you and your doctor discussed stopping the Rystiggo, weaning off, or trying another treatment?
Jodi, Team Member
Brianna-Marie Member
I have never tried Rystiggo. However, my doctor suggested I try it as a possible treatment in the future since it can also help treat MuSK. My only worry is that I was told that you can't have IVIG along with Rystiggo and I do very well with IVIG. Currently, I'm on Rituximab every 6 months and IVIG every 3 weeks and mestinon.
Jodi Enders Moderator & Contributor
-Jodi, Team Member
Allison Echols Member
Hi