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I think in short, everyone’s bodies and symptoms are different and react differently to their individual MG along with Vyvgart and all the other MG treatment-medications. Near as I can tell, I have most of the full blown side effects from my MG and have had very good luck with Vyvgart other than the 50 day cycles prescribed to me and I’m not sure about where my sores / rashes come from via MG, Vyvgart or all the other MG related medications that I’m on… From my dermatologist to my neurologist, they are only guessing what my rashes are from and giving me cortisone type creams to keep them under control… They are not bad by any means just superficial on my knee, ankle and head and just another “wack a mole” maintenance to add on to my MG care…
All I know is that I did not have sores/rashes before MG/Vyvgart and my neurologist won’t prescribe less than a 50 day Vyvgart cycle based off the recent FDA guideline’s on potentially causing sores and rashes in less than 50 day cycles along with the fact I’m already dealing with some of these conditions. I’m also on Blue Cross for two more years that are also denying me less than 50 day cycles due to additional annual cost and potential side effects not identified in the denial letter. Hopefully this will change in two years when I qualify for Medicare…
More importantly for me and the main reason for considering another MG medication is that my neurologist is seeing better results in his other patients from Ultra Solaris and the cycles are 70 – 90 days apart and that would address the reoccurring symptoms gaps I’m experiencing in the 50 day Vyvgart cycles and would also free me up substantially for my job travels and quality of life. If the rashes go away by switching them, we would know what’s been causing them.?
But I do want to make it clear that I have had a great experience with Vyvgart resolving 80- 90% of my symptoms for a decent quality of life…! And would go on to say that if it lasted the full 50 day cycles that I’m on or if I could get it approved for lesser 35 – 40 days cycles it would be near perfect for me…
My other reasons for considering anther medication related to this article is that in a 50 day cycle my MG side effects start coming back at 35–40 days and It just doesn’t last long enough to safely and competently perform my job in regards to driving, traveling and public speaking responsibilities.
If the other MG medications do not work out, I can always come back to Vyvgart and will gladly share with the forum after a few months of experimenting but I’m still convinced that our bodies are all different even though we share the same MG disease and in my opinion there is not a one size fits all MG medication or dosage… Don’t be afraid to experiment within your doctors boundaries to find what is best for for your individual body and symptoms… I’m not a doctor by any means, just sharing my personal opinions based off my personal experiences….
Best of luck to all…
I’m On Jul 10, 2024, at 4:28 PM, Bionews, Inc. <[email protected]> wrote: