Myasthenia Gravis News Community › Forums › Life Hacks and Tips › Anyone with experience with Rituximab infusions? › Reply To: Anyone with experience with Rituximab infusions?
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MemberI was diagnosed with Oculobulbar Myasthenia Gravis 25 years ago after experiencing an acute myasthenic crisis. I was hospitalized for several weeks while I underwent several rounds of plasmapheresis, IVIg, high-dose corticosteroids, and ultimately a thymectomy. I recovered relatively quickly, and for nearly two decades I was effectively treated with 150 mg. of daily azathioprine. On a couple of occasions when my symptoms would begin to peak through the immunosuppression, short, 2-week treatments of high-dose prednisone were given to reduce the auto immune response. In recent years, I was diagnosed with Anti-MuSK myasthenia gravis which slowly became refractory to azathioprine and IVIg therapy. After several rounds of hospitalizations for exacerbations (successfully treated by numerous PLEX and prednisone), in 2020, it was felt that IV rituximab 1,000 mg. would be most cost-effective. I was slowly titrated off the prednisone over a 14-month period. I have continued that treatment plan for the past 2 years and have remained <u>symptom free (now only Ruxience™ 1,000 mg. IV every 6 months, due to insurance)</u>. Haven’t used mestinon in over 2 years. I have no side effects, other than immunosuppression (i.e., no B-cells, but moderate T-cell response). I now see an immunologist on a bi-annual basis to ensure that my immune system status is monitored – this has proved to be a worthwhile referral.