Neuro update on Ty/Gilenya/BG12
You I saw my neuro yesterday for my 6 month checkup. She relayed some information I thought others might find useful.
Although she likes Gilenya, she said there have been 5 heart-related deaths in the US since it was approved last year. She is now hesitant to prescribe it without the appropriate tests and LOTS of monitoring.
In regards to BG12, she is enthused about its arrival but still feels if one is doing fine on the current medication, and especially since the problems with Gilenya, wait a couple years for all the "bugs to be worked out." She did feel it is comparable to Ty in efficacy, but of course, it will be very expensive, and other DMD's will increase in price with BG12's arrival.
Even if JC- (me), the TOUCH program is now recommending an MRI and JC blood test every 6 months with a checkup with the neuro every three once an individual reaches the 24 infusion mark (me). She said my risk is 1/10,000, and so I passed. We agreed if my status changes to +, we'll move to the more aggressive route. She also said there is a 2% chance of converting to JC+ or -. As part of the Stratify 2 study, my next blood test is in September. She also said Biogen is paying for the blood tests of everyone on Ty. I can't remember if I read that anywhere or not.
Although she likes Gilenya, she said there have been 5 heart-related deaths in the US since it was approved last year. She is now hesitant to prescribe it without the appropriate tests and LOTS of monitoring.
In regards to BG12, she is enthused about its arrival but still feels if one is doing fine on the current medication, and especially since the problems with Gilenya, wait a couple years for all the "bugs to be worked out." She did feel it is comparable to Ty in efficacy, but of course, it will be very expensive, and other DMD's will increase in price with BG12's arrival.
Even if JC- (me), the TOUCH program is now recommending an MRI and JC blood test every 6 months with a checkup with the neuro every three once an individual reaches the 24 infusion mark (me). She said my risk is 1/10,000, and so I passed. We agreed if my status changes to +, we'll move to the more aggressive route. She also said there is a 2% chance of converting to JC+ or -. As part of the Stratify 2 study, my next blood test is in September. She also said Biogen is paying for the blood tests of everyone on Ty. I can't remember if I read that anywhere or not.
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