An Interview with Body Builder David Lyons
6 years ago
Thursday, November 8, 2007
Tysabri Part III
I did not know that it is unusual to do Tysabri every 3 weeks. I never even knew it was an option until I was talking to one of the nurses at the infusion center, she suggested I try it to see if it helped me. I can't imagine they would do it if they could get in trouble... at least I hope not. So now I am curious if anyone else is having infusions every 3 weeks? I know some have to be out there because the nurse told me that it was more common for women and they had some people who were already on that schedule. Now I am wondering where they are...?
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4 comments:
I think the Tysabri info said the half-life was 10 +/- 3 days. The hematologist here said they dose drugs at 3 times the half life, which would be average 30, but would vary from 21 (3 weeks) to 39 days (5.5 weeks) depending on how quickly the individual cleared the Tysabri from their system.
Note: I have NO medical training, but I would think the higher dosage would carry a higher risk of PML. That would be my big concern. Before Tysabri, I took Avonex every 5 days for awhile (instead of every 7), so I understand the desire to increase the dosage if the drug isn't working like you think it should. I would definitely ask your neuro about it.
Thanks for that info, it makes me feel like less of a freak. I am also glad to hear of others who had to modify their dosing schedules. The bad thing about having this disease sometimes is the lack of being able to find others who are in the same boat as you are. Again, thanks for the comment. (I ran it by my neuro and she was fine with it, it is some of the infusion nurses that keep trying to put me back to 4 weeks, but I can understand that they forget.)
Just felt the need to respond to this. You are not allowed to take Tysabri on a schedule that is different than every 28 days. Infusions of Tysabri are controlled by Biogen Idec's TOUCH program, a patient prescribing program in conjunction with the FDA. If you are infused with Tysabri three weeks after the last infusion, that is a violation of the FDA regulations. An infusion center that allows that or authorizes that should probably lose its ability to prescribe Tysabri to any patient. The FDA and Biogen take this extremely seriously due to the risk of PML.
I'm sorry that I created such a firestorm about this. My infusion center also does a lot of studies and clinical trials--maybe that is why they allow me to do it. I only know that I burn through it in 3 weeks and that they have the option of a week before/week later and that I utilize it. I did talk to my neuro, but I would hate to be the one that takes Tysabri off the shelf for good. I also think the first comment summed it up rather well.
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