Rockin' Tysabri 12/24/2010
 So I can officially say I’m back in the game. I had my first infusion of Tysabri four days ago, and I’m feeling pretty damn good. Is it the drug? I have no idea.I do know however that this week my muscle spasms are far less existent than they have been in months. Whatever the reason, I’m jazzed. Yep, jazzed. As we all know, disease modifying therapies cost more per year than most of us will ever spend on say, our college educations. However these drug companies do want us on their drugs (go figure) so what my insurance doesn’t pick up, Biogen Idec is paying the majority of. Ten bucks a month is all I pay, plus the cost of a visit to the infusion center. This works for me. The infusion is quick, just one hour plus an extra hour of chillin in the chair for monitoring purposes. Zero side effects so far. This is a far cry from the medicating to medicate, and then medicating some more routine I had with Avonex. Some of you can definitely relate to this, unless your one of those freaks who has zero side effects with interferons. Here comes the really boring part... The most recent stats from Biogen Idec show 79 people having developed PML, with 16 of those resulting in death. So 20% have dropped like flies, with a large gaping hole of information in regards to the other 80% living with PML. If you don’t already know what PML is, a very appropriate description I read called it a “brain eater.” Perhaps that says it all. If not, use google. So in laymen's terms, this is how Tysabri works. We all have T-cells which aim to ward off infection and bacteria in our systems. Those of us with MS have T-cells on crack, which see our myelin as an enemy and therefore attack. So T-cells are sort of a necessary evil. Tysabri binds to these T-cells, working to keep many of them from moving past our blood-brain barriers (BBB) where they do their damage. Even if some of these pesky little fuckers do move past the BBB, Tysabri can work to divert their path away from myelin. So here comes the part where the evil becomes the necessary. Most of us at some point in our lives have been exposed to something called the JC virus, which is what causes PML. Our T-cells are essential in providing protection from this virus moving past the BBB and into our brainz. In some of us, it’s possible that the JC virus might already be living in the upstairs apartment that is our brain, however lives dormant because our immune system has kept us protected. It could be that the immune system suppression that Tysabri creates allows the JC virus to start having very loud party, probably throwing t.v.’s out the window and such. If any of this sounds like bullshit, please feel free to correct me. I’m really only trained in the social sciences, with a working knowledge of google. Biogen is currently conducting a study (Stratify-2) of 8,000 Tysabri users in order to find out if they have antibodies to the JC virus, which essentially just tells you whether or not you’ve been exposed. The question this research asks is if one’s potential exposure can help predict a higher versus lower risk of developing PML. I’m not rocket scientist, but it seems like having these antibodies would um, increase your risk. Either way, I had my blood drawn before my first infusion, and should know within the month whether or not I have the antibody. Obviously because the majority of us do, the presence of it in my body isn’t going to determine my continued use of Tysabri. Anyway, one treatment down. Woot! Peace to you all! It’s almost 2011. WTF?! CommentsVal 12/25/2010 12:02
I'm glad things are improving for you - and wow.. great explanation of everything. I'm still going to have to come back and re read it to get it. Dana 12/25/2010 14:21
Hey Val, 03/15/2011 00:33
How can you see into my eyes,like open doors.Leading you down into my core.Where I become so numb.Without a soul Leave a Reply |
