Multiple Sclerosis (MS) Support Group

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What is the longest time til secondaryprogressive?

brianap
brianap
Does anyone know? I asked my neuro and first he said its generally around 15 yrs. Then he said 20 yrs. I was diagnosed 19 yrs ago, still RR. Neuro wants me to try Tysabri but I don't like the risks. And given that I'm only 33, I don't know that it is something I would be comfortable taking long term. Same for Gilenya. I understand his somewhat sense of urgency, but so far my symptoms have not been anything I couldn't live with while raising four children and I've never done the steroids. I'm just wondering if there is anyone out there who has stayed RR for 20 or more years. Thanks.
brianap
brianap
Faey- I thought the same as well, but my neuro told me there was one- in Europe- where the patient had been treated less than a year and contracted PML. The patient had also done some of the chemo type therapies so may have been more susceptible. He did not know if it was fatal or not.

Punky1- what is the ACTHAR treatment? How long is it good for? Given the price of some of the injectibles, and Gilenya, if it is good for a year the ACTHAR could be cheaper.
It is such a trade off, taking some of the drugs out there.