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 am using Rituxumab. I had problems with all other immunosupressors (azathioprine (gave me hepatitis), micofenolato mofetil (barely manageable, head aches and many other neurological side effects), tacrolimus (after 6th tablet I was completely out). So Rituximab was the last opportunity. Seems to be working, although one can not be 100 % sure. I am using 20 mg prednisone + Rituximab for a year now; I was not able to reduce prednisone, but overall, I am doing things which I was not able to do 1 year ago, like getting a glider pilot’s licence, flying for hours, driving for hours, walking 4-6 km on flat terrain, slow hiking (climbing mayve 400 meters), etc.
Rituximab has very few side effects for me. The first infusion was rather scary, because I got very high blood pressure (up to 200), and the dose was 1000 mg. In hind sight, it should have been split in two (Initial idea was to do 1000 mg followed by another 1000 mg two weeks later, and then maintenance dose every 6 months).
As it turned out, it was 1000 mg followed by 500 mg after 6.5 months, followed by another 500 mg 5.5 month later. I had the feeling that the third dose was too late, and I am planning to repeat 500 mg every 4 months from now on.
Long term effects were actually beneficial: it lowers slightly blood pressure and slows the heart, which offsets the prednisone effect (higher blood pressure and higher heart rate). So now I have an almost perfect 60/80/120… 60 heart rate 80/120 blood pressure.