Originally Posted by cyclelops
I have had Rituxan brought up to me, if my IVIG doesn't work. My biggest concern is the JC virus which rarely causes an encephalopathy, which is fatal. All TNF blockers can cause this, and it is rare, on the other hand I have worked with wildlife and had Lyme, so I am kind of scared to take something that can activate organisms. Many of us carry the JC virus and it can be activated. If it is activated, and one develops progressive encephalopathy, it is over. That said, apparently Rituxan really works pretty well.
Hi C, Thanks for the post. I had heard mention of this fatal brain wasting thing that can be triggered by Rituximb only during my last visit to Rheum. I actually had the series of four infusions in one month in August of '04.
Other than upsetting my stomach, feeling my nerves overexcited, unable to eat with ease from a sense of upward energy or pressure for a year and losing 40. pounds--it was no problem! They did not know about the brain wasting thing at that time. I was symptom free for 5 years until just yesterday.
I knew something was beginning to happen this summer, saw all 13 doctors to get them up to date. Even added Infectious disease specialist to rule out lymes and associated infections. So far clear to go.
Was hoping to starrt in Jan. but may have to start sooner to prevent further damage to kidneys. Not to mention avoid a stroke. Likely contributed to stroke "03. Worked marvelously well on outer symptoms of vasculitis but not a total remission. Huge improvement of quality of life.
I had to go to Stanford Hematologist and see head of dept. to find out about this at the time. Still experimental but at least approved for more crossover tx's. Cannot do IVIG due to genetically deficient Immune Compliments -would cause allergic shock. Even if Medicare would pay. Only way forward is through it seems. Round two coming up soon...No longer a question of whether only when. Refuse to go on dialysis if I can delay it.
Thanks for sharing your little corner of experiences, it helps to know at least one other person who is looking down this path. Best Wishes TT