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Myasthenia Gravis and Ravulizumab (Ultomiris) Side Effects
Hey everyone! A new member asked about people’s experiences with Ravulizumab (Ultomiris).
Have you been on this medication? How did you respond? Any side-effects? What previous treatments were you on?
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8 Replies
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I had my loading dose on 09/15/2022 with my first maintenance dose two weeks later. My schedule is an infusion every eight weeks. My previous treatment was Soliris having begun the treatment in late 01/2020. Soliris enabled me to live a relatively normal life. Since going on Soliris I have had no exacerbations at all. Because of the success of the Soliris treatment it was with a little bit trepidation that I made the switch to Ultomiris. I did have quite a bit of confidence that Ultomiris would prove successful since it works in the same manner as Soliris. I went to Ultomiris with no expectations that it would work better than Soliris but would improve my life just by the simple fact that I did not have to plan my life around a biweekly infusion schedule. So far this has been the case with my symptoms, energy and overall health the same as on Soliris. Possibly my ability to swallow as slightly improved. I have had zero side effects in the seven months I have been on Ultomiris. The only downside is the social aspect of seeing my infusion nurses every two weeks but I will take the eight week schedule as an overall acceptable tradeoff.
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I too was on Soliris until September 2022, when I switched to Ultomiris. I was doing fine on Solaris, but wanted to take an extended vacation overseas to visit with friends and family. Medicare doesn’t allow me to receive my Soliris infusions outside of The States, so I talked with the very helpful Patient Support team at Alexion (Soliris’ maker), and they suggested I talk to my doctor to see if I could switch to their newer (but similar) infusion, Ultomiris. Instead of every two weeks (with Soliris), Ultomiris is administered every eight weeks. On Ultomiris I was therefore able to take that extended trip overseas and be back in good time for my next infusion.
Side Effects: I cannot say that so far, I have experienced any. Soliris & Ultomiris have both worked well for me.
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I have been on Ultramaris for one infusion no side effects at this time. My next infusion is in a few weeks. I will let all know how it goes, so far no change in how I feel.
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I went on Ultomris end of December Had a headache nauseous very fatigue 2 weeks later went on the maintence and had a lot of bad side effects ended up in the E.R. doctor took me off it and am now on Soliris again, had been on that for 3 years doing much better. Glad you are doing ok with the Ultomiris maybe one of these days I will try Vyvgart.
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I Started Ultomaris in February. I like every 8 weeks instead of every other week. I thought I had a rash develop but I was able to rule out the Ultomaris! I see an improvement in major muscle strength in arms & legs and I am hoping it is permanent with Ultomaris! Otherwise no difference than Solaris! My schedule likes this better! Time will tell!
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My Neuro changed me from Solaris to Ultomiris a few months ago. I have noticed a positive effect that seems to take a day or two to kick in. My wife has noticed that I seem to slow down a bit as I get a week or so before my next dosage. Infusions are every 8 weeks and are done in my home. I think I feel more active than I did on Solaris. Not a huge amount but some more active. My experience is obviously positive.
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I had my 6th treatment 2 weeks ago. I am just now getting the full effects of it. The side effects for me have been minimal. The headache the same day as the treatment, but Tylenol helps. Somewhat of a backache, but not as bd as with Soliris. I have been dealing with MG for 30 years and it goes up and down. I just don’t get stressed out if something doesn’t work. I just keep trying and find what I can that helps. I have tried them all. I take Cellcept, Mestinon 60, 3 time daily and Mestinon 180 Timespan 3 times daily, as well as the Ultomirus. Stay positive and laugh as much as you can, it does help. It’s kept me from going crazy. I have had five heart attacks, mild stroke, MG and congestive heart failure. They keep trying to kill me off, but I’m like a bad penny, I keep coming back for more.
Good Luck, and keeping laughing. -
I have a history of colon and thymona cancer st@ge 3 had radation in 2008 never had had any symptoms of mg. Until 2021 I was told by 2 neruo not to to get those infusion because of my history. So just be careful sorry I didn’t understand why
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