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Changing from Vivgart to ULTOMIRIS
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
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