[Joe Mraz]

I am 74 years old. Have MG since 2018. At one morning in September of 2023 I suddenly could not breath well at all. Went to an emergency room, got 1,000 mg of steroids for a few days and Pyridostigmine 60 mg 4 times a day. They also did tracheostomy so I could breathe with the help of machine. In December 2023 they called my family to say good bye. In the meantime I received IVIG and Rituximab and they pooled me out of the grave. I spent 3 more months in rehab. I am home, driving but still feeding via tube since my asophagus forgot how to swallow and draw food into my stomach. Hoping to have it removed in a month or so. Last month I received second dose of Rituximab. I have no side effects from the Rituximab.

[Living]

I too have had Retuximab. I am MuSK positive unable to take steroids, In 2018 my doctor sent me to be evaluated at Cleveland Clinic. I was told that Retuximab was the only treatment for MuSK MG that was actually disease modifying. I was concerned about the rare side effects also but decided to trust that Retuximab would be the best treatment for me. I had Retuximab infusions every 6 months for 2.5 years starting in October of 2018 (so 5 cycles) and while I am not in a complete remission I have had “minimal manifestation” since shortly after starting treatment. I have not had any treatment at all for my MG since the infusions in November of 2021. I feel pretty great about that. I do sometimes have a nasal or quavery voice; I do get fatigued and I have to pace myself; my muscles get weak if I push myself too hard; I have had no choking, drooping face, double vision or trouble with normal daily movements like getting out of a chair, walking, or selfceare. Day-to-day I am doing well. I know that my experience will not be everyone’s but other than being tired the day after infusions I had no side effects. All of my infusions were done at a hospital infusion center; no home health infusions.

[Marvin Yudenfreund]

I’m 81, have had AChar+ MG for 5 years, & have had Type 1 diabetes for 50+ years so steroids (Prednisone) are not an option. Ivig never did anything for me. My excellent neurologist at UCSF has treated me with semiannual infusions of Rituxan, and I haven’t had any crises since. (It’s a lot cheaper than Vyvgart -16,000 vs $75,00/.). The chief concern is that Rituxan is highly immunosuppressive, so you need to avoid crowds & wear a mask when mixing with other people. Also, space your COVID shots at least 4 months after undergoing infusions.

I’ve had no physiologically negative reactions to Rituxan.

[Brenda]

I was diagnosed with MG-MuSK+ in 2009. I see my neurologist at Stanford as needed. I’ve had several plasmapheresis treatments, am currently on cellcept 2000mg/day and mestinon 60mg up to 5x a day and just went back on 20mg/day of prednisone, due to symptoms kicking up (double vision causes imbalance, unclear speaking and arm/leg weakness).

I was coming out of ICU 5 months ago and I had retuximab in hopes for better control of symptoms. I didn’t have any side affects from the infusion and would take another without hesitation if needed. Good luck to you.

[steve673]

Hi Bertie, my heart goes out to you, I’ve never had that treatment, but it sounds like you are experiencing many difficulties, and as a result, that is worrying. I am like you really, I keep getting my medication changed to find something that can regulate my condition. I’m currently on Prednisolone and methotrexate and I still have bad days and worse days. My speech at present is holding, but I can no longer walk. I’ve put my story on you tube under Teesside Ste&Dee. I hope you get sorted my friend, and please keep us all in the loop. The medication in England is way behind that of The USA sadly. We have so few cases here, around 10,000 and research us limited. Trying to explain to a neurologist is difficult, as I’m sure as yours, the condition can change hourly. Take care, sending you much love!