Tuesday, March 22, 2011

Knowledge is Power....

Usually.  In this case, it just gives me more to be concerned with. 

Tomorrow, I start my new MS treatment, Tysabri.  It's an infusion that I will get every 4 weeks at the Barrett Center at UC.  I have read through all of the information I got from my doctor, including the big-worded medication guide given out by the pharmaceutical company.  Here is what sticks out:

"Tysabri increases your chance of getting a rare brain infection that usually causes death or severe disability.  This infection is called progressive multifocal leukoencephalopathy (PML)."

Those 2 sentences are the first thing written on every piece of literature and it's always in big, bold letters.  I am starting to think it's like the signs on the road when the bridge is out, "Bridge out in 1000ft", "Turn around, Bridge out", and finally, "Last chance..."

With the course of my MS, I sort of feel like the bridge is out.  New lesions on every MRI, new symptoms, and it's not been a year yet.  If I don't do something more aggressive now, my quality of life is sure to continue to spiral downward.  I would like to dance at my 40th birthday party in September.

So, now that I knew a lot about the really big, bad side effect, I started to think about the benefits.  No one has gotten PML in the first year of Tysabri treatment.  It is supposed to significantly cut down the number of relapses.  There is a small possibility that it may help some of the symptoms I already have.  And, most people get no new lesions while on the treatment.

For me, it was kind of obvious.  The benefits definitely outweigh the risks.

But, that doesn't mean I'm not nervous to get the first treatment over with.  And I'm hoping that I don't start with my hypochondriac-ness and think every twinge I feel is something terrible lurking in the corner of my brain. 

I did let everyone know what to look for just in case I start with a weird reaction or side effect.  One thing is yellowing of the skin and eyes.  The other is if I start acting really wacky.  I have gotten responses that ranged from, "How will we know?", "More wackier than usual?", "I think I'll just watch for the yellow eyes...".

I also have been threatened not to die on my friend's couch tomorrow night, post-infusion. 

With friends like these.....I'm a lucky chick.

1 comment:

  1. Hey Meeps - there are those that consider themselves to be the lucky ones - and I promise to watch for 'more whacky than normal'!

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