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I am seronegative for MG. I have had a bad experience with Mestinon ( explosive 30 sec warning run to the bathroom DIARRHEA and an IVIG reaction.( shaking chills, low grade fever and forehead headache ) My neuromuscular doc wants to avoid IVIG and due to my seronegative status , my treatment options are limited. Avoiding taking prednisone due to its impressive side effects. He suggested taking Rituximab infusion plus or minus Cellcept therapy.
What are the experiences with Rituximab treatment for seronegative MG?
Rituximab is administered through IV infusion as a targeted therapy. Like other targeted medications and immunosuppressants, it works by decreasing immune system activity. The main consideration is that this can increase infection risk. Recent clinical Show Full Answer
Truthfully, I cannot, definitively , say that the Ultomiris has been that effective. I only know that in conjunction with my other meds, that my situation has been very stable. I have, sometimes, been of a mindset to stop the Ultomiris just to see. Just not willing to take that gamble at this point. I do know that I suffer from chronic diarrhea.
Thank you for your information. Sadly, GI distress is a common side effect of many MG treatments. When your doc added ULTOMIRIS treatment every 8 weeks you reached an improved MG status?
Am sympathetic with your diarrhea issue. Sadly the condition and all treatment options include a diarrhea component. I take cellcept, prednisone and mestinon. Additionally, I take infusions of ultomiris *every eight weeks). To help with the diarrhea I drink banana smoothies (with the peel) and take chlorostyrimine in a drink twice a day. Hope this helps.
I'm seropositive. Rituximab treatment had no positive effect on MG for me. But I'm now very sensitive to any infection for the next year as Rituximab has often an effect of more than a year on your global immune system.
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