So far rituximab is working. My next MRI is tomorrow. The steroids helped while I was on it. I couldn't sleep, always hungry, tired, weak, etc. It drove me crazy plus I am diabetic so my doctor didn't want me on steroids too long. However, as soon as I stopped the steroids the symptoms came right back. That's when I started Rituximab instead.
Totally understand going back and forth to the doctors and they kept referring me to all different doctors. I was in so much pain and thought the doctors thought I was probably going mad! I even ended up in the hospital for chest pains. I had a bad tooth infection and the extraction was delayed due to my chest pains. I also have to mention that with my luck I started to take B12 vitamins over that counter since I was so tired all the time. Then those vitamins were recalled after I was taking it for about 6 weeks due to salmonella or staphylococcus contamination. I was wondering why I was losing weight without tyring and had terrible stomach cramps. Then a year later I was diagnosed with pachymeningitis. Could be related but not sure.
I'll keep you posted on the MRI results and if my neurologist will recommend another round of rituximab probably by end of April. My last infusions were in October 2017. Feel free to send me a private message if you want to get in touch with me.