Claire M Walsh

My story is just the opposite, my best  day ever since my diagnosis of MG in Dec. 2020 was the day I stopped Cellcept! I had terrible GI issues on Cellcept. Of course it was given to me as a way to wean off of Prednisone, just as many of you also mentioned. I have osteoporisis so needed to end prednisone. I started Vyvgart several months later…[Read more]

I have a very supportive family, but I too feel that no one really seems to really understand the fatigue we all go through. I have said this before, we just need to keep chugging along as best we can and hope better meds come our way. To the person above who has struggled with this for 60 years, I can only hope you have found joy in hidden…[Read more]

This is all so interesting to me because I started Vyvgart last summer, and I’ve been wondering what results other people are getting from it. Personally, I feel IVIg helped me feel better, but my Neurologist did not think it was not a good idea to continue it any longer…had been doing monthly for 18 months. I felt my best last spring when I…[Read more]

I have been taking Mestinon for over 2 years now,  and  I have never  had that reaction. I believe my GI difficulties aren’t helped by this drug, but it does give symptom relief to me also. I am so sorry this is happening to you, Must be awful. Have you tried Vyvgart  infusions?

I am on 5 mg a day, needed to stop Cellcept completely due to side effects. Have had 2 rounds of Vyvgart. First showed no improvement but the second round did ( 4 infusions, 1 per week). Have you tried that? I was on immunoglobulin infusions twice monthly for over a year until starting Vyvgart. Snowflake disease, everybody is different 😱

Hi, my specific question is about what others have done after the first 4 Vyvgart infusions. Luckily, I was taken taken off Cellcept (3000 mg a day)  in April at my request as I had  GI side effects and severe bruising and bleeding that came way too easily if I scraped or bumped any part of my skin. THAT ALONE made me feel so much better! Wish I h…[Read more]

I also have had stomach issues from day one of taking both Mestinon and Cellcept. After over a year of Cellcept, my Neurologist finally stopped it. I had developed several ulcers, plus way too much bruising on my legs and arms. Truthfully, I am a little more fatigued, needing naps again, but I feel so much better. I currently take 90 mg. of…[Read more]

My weight has remained exactly the same throughout my whole first year of MG. I was told I would gain, but I only got the moon face from the 60 mg/day of prednisone . I am now down to 5mg and the moon face is gone!

Greg, I had major surgery ( a back fusion) exactly 2 MONTHS to the day before my diagnosis.  It is often mentioned, but not scientifically proven, that any stressful event can trigger MG. I’m now 10 and 1/2 months into my disease and  76 years old,  and I have come to realize that I probably was showing some minor symptoms of MG prior to my di…[Read more]

My case sounds similar to Robert B. However, I developed no antibodies after my first two vaccines, although others seen by my Neurologist did ( was on very high doses of Prednisone back then). After  the third vaccine, I had a response,  but my numbers were not very high. I think any response shows a positive so I did not get too excited. I am o…[Read more]

I wanted to reply and say how sorry I am that some of you are having many more severe symptoms  than I am. I was diagnosed quite quickly at a Medical University here in my state. I will share the regime my Neurologist has had  me on after I had an MG crisis 2 weeks after being diagnosed, and it seems to be working fairly well. I get IVIg for 2 d…[Read more]