Diagnosed 2/14/13 with PPMS. Neurologist wanted me on Copaxone. Finally started it on 03/12/13. Received a letter from neurologist on Friday(02-15-13) that he would prefer me to be on Tysabri. I am negative for the JV virus so it is something that is possible. Just don't understand the quick change. Any thoughts?
sure about the PPMS? Usually there is no treatment that works for PPMS and they don't usually give it although some docs will try. Perhaps he said RRMS ? Tysabri works well there. There are some of us that are JC+ and still take Tysabri........perhaps he thought it over after you left?
They are expanding Tysabri for types other than RRMS but as Tysabri tells me, its all up to the doc.
Tysabri is a more potent drug that the initial ones many people are offered -such Rebif, Avonex, or Copaxone - and it sounds like your neurologist wants to treat your MS agressively. that is a good thing. I would have a talk with the doctor and ask all your questions, including what type of MS does he think you have. It would be highly unusual for someone with PPMS to be offered a disease modifying therapy because they haven't been proven to be effective for that form of MS. I'm thinking, though, that there are some studies looking at PPMS and Tysabri.
Anyway, I'm just thinking out loud here- I hope you'll stop back and give us an update.
They still use disease modifying drugs for PPMS. There are less people for PPMS studies so its hard to compare them to RRMS studies. People are not statistics. I have a form of cancer which does not respond to chemo. Guess what chemo worked in my case. He is thinking Tysabri to be more aggressive. I have PPMS and I would do Tysabri if I did not have Cancer.
I would absolutely call and ask why the about-face in treatment recommendation. I find it rather disconcerting when docs do an about-face without explanation. True, Tysabri is more aggressive. But that was true when he put you on Copaxone.
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