I appreciate your caution. That's wise. When I researched, there was no reported case of PML with Gilenya that was not also linked to Tysabri. Now there is one, with two cases reported total. I think I would still choose it, but it makes it a messier choice. That's still a very low incidence compared to Tysabri, but PML is a horrifying outcome. I need to write an advanced directive that specifies DNR and DNI specifically for PML. I would not want to live with the aftermath of that disease.
Now that I'm on Gilenya, I have to balance the benefits I'm getting, plus the future benefit of having possibly slowed the disease down now, plus the risk of rebound, against the risk of infections and PML. Unless PML cases start crawling out of the woodwork in large numbers, I'm committed for a few years. The immune system slows down after a certain age, so if I can make it that far on Gilenya, that's my time frame to stop, both because of increased risk of infection on G at the point and because any rebound would presumably be milder. I'm also looking at possibly substituting drugs if better options come available, but that's speculative.
I am better now, but my initial symptoms during the flare that led to diagnosis absolutely terrified me. I feel much less anxious on a drug than I was off one. I am also working to increase cognitive reserve, maximize sleep, maximize nutrition with a Wahlsian diet plus supplements, enhance blood flow with aspirin, and looking for a doctor to consult with about whether and how to add neuroprotective hormones. I have read that 15 % or so of MS patients turn out to have mild disease for a life time, but those odds are too low for me, so I'm fighting with everything I have as if I know I am at risk for bad SPMS.
Re 70,000 patients on G, I have no personal knowledge. That's the number I've seen quoted on Dr. Prof. Giavannoni's blog at the London neurology center at Barts. He posted this article today which again used the 70,000 number. It would be interesting to see it proved or disproved. http://multiple-sclerosis-research.blog ... tions.html
I look forward to hearing about what you choose to do and hopefully why, if you are willing to share.