The person I spoke to today said that
the risk of PML is more with an increase in infusions, but that even those people fall within the 1:1000. Those patients with less infusions have less risk. Sorry I didn't make that clear.
He also said that they do not recommend taking a break from Tysabri. When I asked him about the comment someone from the help center said to me yesterday, that disease activity seems to resume after about six months from stopping Tysabri, he admitted he didn't know that for sure, but that if somebody told me that from his support center, it's definitely true.
I'll be asking my MS neuro about taking a break when I see him Friday.
Quote:
Originally Posted by ewizabeth
I got a call from the Senior Director of Patient Services of Biogen Idec this afternoon and I have his direct phone number for future reference. He assured me that the risk is still within the 1:1000 even for patients with a greater number of infusions. The current number of confirmed PML cases is 23.
I explained to him why I disagree with the change in their reporting policy and why I don't think it's acceptable for them to put this duty on the backs of the physicians.
I thanked him for calling but until they change this policy or make it easier for patients to get accurate data and reports, I'll keep working for this to change.
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