Confidence in your treatment regimen?
How easily or difficult is it for you to have faith and confidence in your treatment regimen?
Has this changed over time?
Do you doubt faith in doctor decisions or your own choices in your treatment regimen more?
I recently fired my Neurologist. In 15 years he hasn't run any test or offered any advice. He has canceled my home infusions twice without discussing it with me. He is not read up on treatments. I am currently on Ultomiris which works 80% for 6 of the 8 weeks. I have waited 3 months on a new Neurologist and have 2 more months to go. So to answer your question, no.
I can understand your frustrations. I truly hope your new neurologist proves to be an excellent aid in your health and helpful. Please feel free to check back in any time and let us know how you are doing and how the appointment goes in a couple months. Wishing you well. -Jessica (Team Member)
Initially I had a great deal of trust and faith in my neurologist and treatment. After going on Mestinon I went into remission for almost 2 years. Then I had a flare and things went downhill from there. I finally got back in to see my neurologist and he put me on prednisone--a lot of prednisone! Eventually this worked. But I need to get off this and on something that doesn't destroy my body. As of now I am unable to get in to see my neurologist anytime soon. I will have to wait several months! Even using the portal is not helping as I am not getting responses from the doctor. I am now exploring other options such as finding someone several hours away. This is dishearting, but I am dealing with it.
I finished my second series of Vyvgart. And 3 weeks later, all the MG Symptoms came back. Waiting to get approved to try Ultimaris.
Unfortunately, you are not the only one to say that you experienced short-lived effects from Vyvgart, which is definitely problematic when, according to the VYVGART website, "The safety of starting the next treatment cycle sooner than 4 weeks from the last treatment of the previous treatment cycle has not been established." I greatly hope you get approved soon for Ultomiris! Jodi, Team Member
I am confident that as long as I continue to take the mestinon I won't have a problem.
glad to hear you are confident in your current treatment. I hope you continue to find it helpful. Kindly, Jessica (Team Member)
