I thought I would try to be more coherent today in describing my appointment with the specialists at Barnes Hospital in St. Louis. After the neurological exam and looking at my MRI's and LP, they confirmed I have MS. I did not know that the issues was debatable.
The neuros did say that they thought my ms was mild at this point (despite how I may feel) based on the number of lesions, the fact that I have only had one major flare, and the neurological exam. They also seemed to be suggesting that they thought that tysabri had been too aggressive of a therapy for my condition.
They stated that they would not recommend I try an interferon or copaxone again based on my previous reactions. They stated that this could result in an anaphylaxis reaction which I would really like to avoid after the tysabri reactions.
So their recommendations seemed to be that I should:
- treat the symptoms -- They gave me some samples of provigil to try. I am going to call my neurologist's office tomoorow to discuss this with him before I try it.
- they said that I could try one of the drugs that is currently being used to treat transplant recipients ( they also suppress the immune system) One that was mentioned is Cellcept. It is currently being tested in trials. I do not remember the name of the other as I had never heard of if (sorry, Gretchen). But it has been around longer, is also used in transplant patients, and is being used more widely in Europe. It is also cheaper than Cellcept. She said that my neuro should be able to prescribe one ot these. They are oral drugs
- Finally, they stated I could try to get in a trial. There are currently 3 different ones being conducted in St. Louis at another ms center. The are all oral drugs. (I am not too crazy about this option for several reasons. Driving to St. Louis (145 miles each way) on a regular basis would not be fun. And I am not sure I am brave enough. I do not really want to be on a placebo for 2 to 3 years. Plus, I do not have the greatest history with meds.
It was interesting going to a medical practice that specializes in ms. If I had different insurance I would consider going there on a regular basis. (I would consider changing insurance plans this summer, but the state plan is far more expensive than my HMO.) While they seemed to have a more conservative approach than my neuro, I felt pretty comfortable there. And it was great to talk to 2 doctors that specialize in ms.
Finally, they stated that they believed that there would be an oral med for ms in 2 to 3 years (perhaps sooner) so they felt that I just need something to hold me over until then. They also thought that rituxan (infusion) would probably be the next treatment approved by the FDA, but agreed that with my history I may want to avoid it for now.
Sorry for the long post. Hope everyone is having a good weekend!
Diagnosed April 2007
Started tysabri -- December 2007
Stopped tysabri -- April 2008 (developed antibodies/severe reactions)