This disease sucks.

I had my appointment at Penn today with my GI to discuss my progress, or lack thereof.  First of all, it was extremely depressing because there was a man in the waiting room with me who passed out after taking two steps and couldn't even take a bottle of water to his face.  From what I could overhear, he was very ill and drugged up.  I think he had just had some kind of procedure; colonoscopy or small bowel follow through.  Whatever it was, it was sad seeing his wife visibly shaken and frantic.  But it made me think about how blessed I am to have the quality of life I do, even if it isn't the greatest.

For those of you who don't know, I am administered an IV drug called Remicade every 8 weeks which, for the most part, has kept me in remission for three years.  I cannot express to you how much this drug changed my life.  It allowed me to travel, finish school, work, etc.  It healed my fistula which made my life MISERY for years.  But like many who take Remicade, my body has obviously built up antibodies that have reduced its effectiveness over the past couple of months.  This issue is what I discussed today at my appointment.

I have a couple of options.  There are other Anti-TNF drugs similar to Remicade that I can switch to.  TNF is a substance in our bodies that regulates inflammation.  When Remicade comes in contact with TNF in Crohn's patients, it neutralizes the molecule so that the inflammation process doesn't continue.  Kind of confusing, I know.

One of the drug options is Humira, an injection I can give to myself at home (woohoo) every couple of weeks.  Essentially it does the same thing as Remicade but the hope is that my body will respond better to a different type of Anti-TNF drug.  I can't imagine being able to inject myself every couple of weeks rather then spend 4 hours in the hospital.  Don't get me wrong, 4 hours is nothing.  But it's the fact that my whole day is ruined when I get my infusion.  I have to take the day off of work and then I'm pretty much useless the rest of the day because of all the Benadryl they give me.

The other drug my doctor mentioned was Tysabri which I had honestly never heard of before he mentioned it.  Like Remicade, it is an infusion I would have to be administered in the hospital.  It is not an Anti-TNF.  From the minimal information he gave me about Tysabri, it scared me.  It was first approved for the treatment of Multiple Sclerosis and was only recently approved for Crohn's.  To hear that I would be treated with a medicine used for MS was kind of just freaky.  I know many of these diseases are malfunctions in our body's inflammatory process, but it is still scary to think of being treated with the same medicine as people with other, more serious ailments.  Like every medicine out there, my Dr. mentioned that 1 in 3,000 people develop a severe viral infection in the brain from this medication that leaves one either paralyzed or dead.  Scary to hear at first but all of these drugs have horrible potential side effects that may not be realized until years later.  It's all a gamble, I suppose.

The last option, which is what I've decided to go with, is to try Remicade one more time at 6 weeks instead of 8.  Because I am not extremely ill, I do not feel comfortable totally abandoning something that has worked for so long.  I am not ready to give up on Remicade yet and considering my life isn't complete misery and I am relatively healthy in comparison to previous flare ups, I'm willing to give it another shot.  I did feel slight improvement after my last dose, so hopefully one more will get me back on track.  In addition to the Remicade, I'll be taking some suppositories (YAY!) to help control some of the inflammation at the lower end.  Lovely, right?

Well I better get to the pharmacy to drop off this wonderful new script.  Should be a ball.

Did I mention this disease sucks?

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