Remicade

So last summer my crohn's was starting to act up again, and I was tired all the time. So we did some testing, and found active disease. That meant that my imuran and pentasa just weren't enough. It was time to bring out the big guns.

In order to get coverage for this new medication, my GI doc and my dad's insurance company had to liaise. It involved a couple of phone calls and emails, but overall pretty painless. I had to get a TB skin test, which came out positive...like I thought it would. Then, they set me up with a remicade nurse to help me make my first appointment.

I ended up choosing a clinic near my university, for convenience's sake. At each appointment they started by taking my blood pressure, temperature, asking about my weight and if I had any recent illnesses or infections. It's not a good idea to take a powerful immunosuppressant when you're already sick.

Then, the iv went in, and the infusion started. It was actually pretty boring. It took about 3 hours each time for the medication to get into my system. So I usually brought a book, and a sweater because I found it chilly. They set me up with a comfy chair and a pillow, and there were some tvs as well.

My first infusion went fine (week 0). No crazy allergic reactions or alarming symptoms. They like to keep you for 30 min after, just in case. And the second went well (week 2) but I felt a slight headache develop in the middle of the infusion. After the third infusion (week 6), I was in blinding pain. I couldn't even move my head. I almost threw up. And in the following weeks I suffered from really awful migraines. Anywhere from 4-6 a week. It was debilitating. I missed way more class for migraines than I ever did for crohn's (disregarding my 6 weeks of hospitalization).

So clearly remicade was not the drug for me, even though my bloodwork was looking good. Luckily my GI trusted me enough to take me off asap. I didn't even make it to the "maintenance stage" of remicade, regular infusions every 8 weeks.

Until next time,

Laura