- Family Elder
- Posts: 2197
- Joined: Mon Sep 11, 2006 2:00 pm
- Location: Dayton, Ohio USA
I had the big talk with my neurologist about Rituxan today. He is all for me trying it, but his concern was more for the insurance part of it than prescribing it. He said he has prescribed it to two other patients, who he says are not doing bad, but ones insurance dropped it for being off label and is now messing with her/him. What he told me next was interesting so I listenend up. He said that he wants me to try Tysabri just to see if it works. We really don't talk shit that much since we are always discussing EDSS test stuff and all the other stuff that goes with being in a trial. He surprised me with how much he knew about Rituxan and also the immune ablation that's going on at Rush. He said he would support anything I wanted to do, but I convinced myself to try Tysabri because I can get it yet this week, early next week at the latest.
I've just been going such a long time with nothing. Tovaxin felt like nothing. Other than a very brief period, which knowing me could have been placebo effect, I felt nothing but worse almost the entire trial. I can remember just starting out I really didn't care if I got placebo or not since I was still running and stuff. At any rate, since we were just talking shit, he told me that he really likes what he is seeing in people taking it. We never talk about stuff like that. Maybe it's because I was in the trial. The thing that really stood out is that insurance companies, and also drug companies themselves through their financing, frown upon off label prescribing when a drug is getting ready, or is already, to go on trial. I think I'm going to check into that with that link you gave me. My ins. sucks the hodge anyway. United Health Care used to be good. He still said we could pull the plug at any time because Tysabri doesn't have near as long a wash out period as some other stuff like the interferons. So he'll prescribe Rituxan, and also the immune ablation, but he said we should just try and see how I do. Even though I've progressed pretty quick, I had virtually 5 disease free years with nothing more than bouts of ON that would come and go as I got hot and having to pee alot. I still have both of those, only much worse. Looking back I'd take that anyday, and since I've only been having progression for a short period time in the grand scheme of things, who knows. At least I'll have something that is helping a lot of people out.
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