Five Days and Counting...

Today I finally got a phone call from my doctors office and the case manager who will be keeping tabs on me while I am taking Tysabri. After two and a half weeks of waiting, the insurance approval and paperwork all went through and I am cleared for my first infusion on Wednesday at 10 a.m. I had already filled out paperwork months ago when I originally considered starting Tysabri, so I was quite anxious and getting impatient that it was taking so long to get my appointment set.

For those of you not familiar, Biogen Idec is the company that makes Tysabri and you must enroll in a prescribing program called TOUCH if you want to receive the drug. Basically, because of the risks associated with Tysabri and the stringent requirements to receive the drug, the FDA mandated that all patients be followed closely while they are treated. This is to ensure that you are taking the drug correctly and the infusion site is monitoring any potential reactions, PML (progressive multifocal leukeoncephalopathy) being the most serious. I highly recommend you google "Tysabri" or "Natalizumab" and read about the drug history because it is quite interesting and will help you understand the decision I had to make.

What this means for me is that I should see some sort of improvement before twelve weeks or it is recommended I discontinue. Also, I must continue to wean off of steroids and be totally steroid free in six months, which I expect to be if I continue to taper off at the pace I am going. I am on 30 MG of steroids right now and I will be decreasing to 25 this Sunday. I have not noticed a significant change in my Crohn's symptoms compared to 40 MG but the decrease has certainly taken a toll on my energy levels. But that's another story.

So on Wednesday morning I will receive my first Tysabri infusion at Penn Presbyterian. It is some comfort that I am familiar with the infusion site and the nurses there from my time on Remicade. The infusion itself only takes an hour but I suspect that with the post-infusion monitoring and other stuff it'll take about 2 1/2 hours.

I am certainly nervous and I am sure I will be scared come Wednesday morning, but mostly I am just anxious to get the first one out of the way. I am trying not to think about it because really the hard part is over. I have read the small print and heard all the horror stories of the risks associated with Tysabri. The tough part of listening to everyone's opinions and considering my own doubts. Now it's just time for me to get better and I will be the happiest person alive if, by this time next year, I can say that Tysabri made 2010 better than 2009.

I am ready to turn a new leaf.


Erin said...


I'm so glad you found my blog! I was hoping to find your email address, but I added you to my AIM list. Are you ever on AIM? I'd like to further talk to you. I know our diseases our different, but I'm sure you have questions about Tysabri, that I may be able to answer. The best information I received was from other patients!


PS---I love this drug

Ellen said...

Hey Erin,

I added you to my AIM contacts :) I'll be looking out for you. I have lots of questions! Hopefully I'll catch you on there soon.