This week and other things

I am taking a break from some very intense Mario Brothers playing on Wii. I am absolutely addicted. I haven't really played Wii much since we got it but my brother, Liam, got me the new Mario and I feel like I am 12 again. I am getting frustrated and tempted to throw the controller through the screen. So yeah, I figured now would be a good time to set the game on pause.

In other random news, I've also become addicted to twitter. I've had a twitter account for quite some time now and never really understood the fascination until recently. I'm not one to update my facebook status much and I usually make fun of people who feel the need to divulge every single detail of their life via their status. But I feel like at least with twitter, people come there and expect random and trivial thoughts. When the Phillies Roy Halladay trade stuff was going down, I was on twitter constantly waiting to hear what people had to say and I think that's when I understood just how cool it is. It's a better forum for sharing both totally useless information and actual news stories as they break. My twitter is /sweener if you want to stalk me :) But please, follow me so I can follow you.

Also, my brother-in-law and sister, Nora, made a book for me on blurb.com with all of my blogs from the past year. It's really neat and resembles an actual book, complete with a picture of me on the back. They claim they didn't realize the color of the book they picked would be so brown-ish. But I think it adds character to a book with the title, "The Swollen Colon".

Anyway, in Crohn's-related business, I've been feeling okay. I was convinced for a couple days after my Tysabri infusion that it was working right away but it was more my head telling me I wanted to feel better. I think that's a good thing though because a few months ago I couldn't imagine myself being optimistic about anything treatment-wise. As much as I wanted to come on here and praise Tysabri as my next Remicade, I resisted. Really, I'm not sure what's going on. I just feel stuck in a rut. I'm not extremely ill and I am far from feeling like I could resume a normal life.

The good news is that I've felt comfortable enough this past week so drop my steroid dose down another 5 MG's and I will do the same again tomorrow. The week before I got my Tysabri I kept steady because I was feeling like absolute garbage. And as horrible as my energy is right now, I can deal with it. It's the intestinal symptoms that are the hard part. As long as they are manageable, I am comfortable decreasing the roids. So tomorrow I will be down to 20 MG, which is great because I expect some of the Prednisone side effects to diminish now.

Well, I think I took a long enough break to resume my Wii playing. My heart rate has gone down and I'm not all hyped up anymore. Who would have thought Mario could be so challenging?


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.



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.