The Big Day

I received my first Tysabri infusion this morning! I will admit I was very anxious, but not a nervous or scared anxious, just ready to get started and find out if this drug will work for me. I actually wasn't scared at all despite the fact that I had to sign over my life in what seemed like the millionth round of paperwork, this time to cover the ass of the hospital where I get my infusion.

I arrived for my appointment early to sign the stuff in my doctors office and then proceeded to the cancer center where the infusion suite is. My appointment was at ten but of course nothing could simply be a smooth ride. Even though I know the insurance approval went through already, the infusion site claimed they had no knowledge of this. So of course they had to call my insurance company and confirm this for themselves. It's understandable and considering the price of Tysabri I certainly wouldn't want to be surprised with a bill come January. Anyways, after they got the OK from my insurance company the pharmacy got going to prepare the drug.

I didn't get back to the actual infusion suite until 11:30 and like I have read online, the infusion itself only took one hour. They monitor you for an hour afterwards to make sure you don't have an allergic reaction. I am not sure if this is also the time frame in which PML would strike, but I would assume they look out for those symptoms, too. By 1:45 I was on my way out. I am thinking now that the first one is out of the way, the rest will go a little more smoothly and it won't take as long.

I am curious because I have not talked to anyone who has Crohn's and received Tysabri. From those I have heard of with MS, it took at least two infusions before they started to notice an improvement. I am not suspecting anything dramatic but I hope this allows me to smoothly transition off of steroids in the next couple of months. Last week I decided not to taper down because I've been having some pain and other symptoms. I just want to be roid-free and healthy.

Right now I am absolutely exhausted and looking forward to a good nights sleep. I am glad that finally, after all this time, I am on some kind of treatment that isn't steroids. It is crazy to think that right now as I type this, there is something completely beyond my comprehension trying to change my life.


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