I had my 25th dose of Tysabri on June 5, 2009. It's been 8 weeks since then and I haven't been able to receive another does due to having shingles. My shingles are not due to the Tysabri. Unfortunately, I've had recurring cases of shingles for the past 12 years.

When I saw my neuro a few weeks ago we decided that I would take a vacation from Tysabri. I said I would take a few months off and my neuro said let's take it a month at a time for up to 1 year. As long as I don't regress....Tysabri has been wonderful for me because I'm out of a wheelchair and walking again.....I'll stay off it for 1 year. My neuro's concern is that Biogen doesn't always give info to the drs as soon as it should and I've been stressed trying to receive info. My neuro is concerned that the stress is effecting my emotional health and may have led to the shingles episode. It's been a bit over 2 years since I had my last episode of shingles.

The problem is that I really want to be on Tysabri but I also want more info. With the TOUCH program Biogen must have all the info it needs about the 11 PML cases. I would like to know what the commonalities are other than the length of time the patients were on Tysabri before developing PML. If someone who is eligible for Tysabri were to ask me for my opinion I would say "Go for it"!!!!!!!!!!!!!!!!! It isn't a cure for MS but it's a fantastic treatment. I simply want a bit more info before I begin again. I want to be able to make an informed decision and then I'm hoping to go back to my regular every 4 weeks infusion. I don't think that asking Biogen to give patients info on the medication is asking too much. I don't need to know every little detail of the PML patients' lives.....I simply want to know the commonalities other than length of time.