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Hi, I’m on rituximab for several months now. My doctor had to start me on a lower dose due to , i am so sensitive to everything. I’ve had MG since 2016. I started with the first ivig med and mestinon. Eventually i had allergic reactions. I went through the gammit of all the oral drugs, and either my labs went to high or i became allergic to them or they didn’t work for me. My doctor had started me on predisone some time ago,due to drug reactions of the past meds. It helps, but i don’t like the side effect of weight gain. Now with the rituximab, he has been decreasing my predisone and slowly increasing the rituximab. I do feel better on it, i do have lower body weakness. It is getting better. I couldn’t go up step without pulling myself up them. I started with getting better with steps. I do have to watch how much physical activity i do. Before this i was an athletic type, it took me some time to slow down. I still try to keep my walking in , all thou it’s only blocks instead of miles. I’m down to 7.5 mg of predisone, and get the rituximab every 3 weeks now.( I started on every 2 weeks) The only reaction i’ve had from it is a itchy rash, from my chin down to my collar bone. I manage it with either benadryl or just cold cloths to the itchy area. I can’t always take benadryl due to the sleepiness it causes. I usually get the reaction the next morning with the rash. It feels like a long road, but hang in there. My doctor is very up front with me, so i do already know what the next step MIGHT BE. I feel if you keep a good repor with your doctor, you can research ahead and ask the questions you feel necessary to ask. I make a little notebook for questions i need to ask. I feel that way, i’m more in charge of my health. I’m trying my best to keep to doctor orders of slowing down, I’m 65, and i imagine it is very difficult for those that have children or still an age of activity, or grandchildren. Good luck to those that are thinking about this medication, or are starting it. Also , it helps being in a support group. I can’t always get to my meeting, but i can call the person that is in charge of the group, and she can either direct me to some information, or just talk, at times sometimes that alone can help.
take care and god bless.