Posted 10/7/2012 3:06 PM (GMT 0)
I was diagnosed with UC about a year ago. It quickly progressed and I didn't respond to the oral medications. My dr started me on Remicade and it was like magic. I instantly felt better, the flare ups were gone, and my levels were all normal. The only issues i experiwnced was my hair thinned, but i was willing to take this as a trade off for my feeling better. It was like i had my life back!
I didn't have any reactions in the induction phase and my dr was shocked I had responded so well. She told me most people don't see improvements until the 2-3rd infusion. All was well until my 5th infusion. I had a horrible reaction; stopped breathing, chest got tight, BP dropped, and temp spiked. It was scary for me, but luckily I take my infusions at the hospital where my GI is. I finished out the treatment uneventful. Quite nervous, but having faith in the only meds that have worked, we decided to give the Remicade another go. I went to my infusion about 2 weeks ago, I had a slight reaction to begin, but I had a nurse handy and some Ativan to keep me calm (so not to add to the reaction) and I finished out fine. Here I am a week into the worst aches and pains I've ever had in my life. My PCP thinks I may have developed a form of arthritis, which apparently is common, but after reading all the forums online, here and other sites, I want to think its the meds. I went months without any issues whatsoever and all of a sudden I'm crippled. I'm 25 and can barely function. My elbow, shoulder, knee, and feet are all radiating with pain going on a week and now it's so bad I can't sleep. I've done the warm baths, Tylenol, and even elevating the joints. Nothing has helped me feel better.
I think delayed reactions seem to be a common pattern. I may have to try some different medications based in my experience and all the input I've read here.
Here's to hoping we all can progress and get better.
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