Tuesday, August 7, 2007

Tysabri for me . . . ?

I finally spoke with my neurologist today, prepared to do battle to get Tysabri rather than Copaxone since I have been feeling that Copaxone hasn't been working as well as I would like. Dr. Danish was wonderful. With doctors like that, I don't feel like I will ever switch from Kaiser. He was extremely reasonable. He of course wanted to know why, I explained that I was quite a bit more tired and having new symptoms (my newest is numbness in the tips of my toes) as well as nerve pain in my hands and joints. He indicated that the anti-depressant that I was taking (generic Celexa) sometimes causes patients to feel more tired and sometimes the other way around (which is strange I think but believable somehow). He suggested ways to fight the fatigue include changing from Celexa to:
  • Wellbutrin (which I unfortunately already tried and switched to Prozac because it gave me headaches)
  • Prozac (which I also tried but since I was having trouble sleeping but still feeling fatigue, switched to Celexa)
  • Effexor which I haven't tried.
He also suggested that maybe using Provigil when I have a very difficult time with fatigue (so not on a regular basis but as needed). I need to read over the pages on Effexor and Provigil up to see what the side effects, etc are and talk it over with my wife. I'm very up-beat today because I feel like Dr. Danish was so helpful - the way doctors should be - willing to take time for me and eager to help me in the best way possible. I think he could also tell that I had done my homework and that helped.
Signing all the forms to sign up for TOUCH and Tysabri is pretty scary - they want to make sure that you know that you might die if you take it and that's a little intimidating to say the least. I have read about several people who have been presented with different views on the uses of Tysabri from "only as a last resort" to "everyone should be taking this." Dr. Danish took a reasonable approach. He explained that it's better at stopping MS than anything else but that it has the potential severe negative side effect of death and so he only recommends it when other medications don't work. That being said, he was more than willing to allow me to "take my life in my hands" and choose it if I thought it was best for me. I can't say how glad I am for his wonderful attitude! I was able to get a time slot for an MRI for Sunday and so I'll be off and running in no time at all.
I let my wife know that I had signed all the forms and she had mixed feelings. I think she is more worried about me than I am. I had cancer a couple of years ago (Testicular - I'm half nuts but not likely to win the Tour de France) and I know that she was very worried about me then, more than I was worried about myself. I wonder if this is generally the case with caregivers. I know that when my kids are sick, I sometimes have to take a time out because I don't know what to do with myself because I'm anxious. She and I are going to pow-wow tonight and say some prayers to try to decide if Tysabri is the right thing for me. I have felt as I have learned about it that it is but I think being specific and asking in prayer is never a bad idea.