Side effects to Remicade or more...

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Sep 3, 2013
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Hello everyone. I have been struggling a lot lately and would love some input.
Brief background-
2012 diagnosed with left sided colitis, after being on prednisone and clearing up enough to stay away from bathroom for an hour instead of ten minutes, my doctor deemed me cured and put me on Lialda to keep me stabilized. My doctor and my parents and all of my teachers and counselors thought I was a baby because I still had pain because according to them, I was in remission. Feb of 2014 my flare up had gotten so bad that I had to drop out of college. I had an emergency colonoscopy and found out that I had severe pan colitis. My parents felt bad at first but once the prednisone had kicked in, again they thought all was fine. They took me to a holistic doctor and he told me he could cure me. At this point I didn't want to try any more diets or special teas; I just wanted to get better, and fast. So the doctors urged my parents to put me on Remicade. After lots of fighting and my mother telling me that the "poison" would eventually kill me and make me have alien babies, I went on it.
So I started in April, also when I started my first job because I finally felt strong enough. Remicade was working wonders! Finally, a taste of the normal life! I started getting little joint aches at work. I thought maybe it was because of the rain or maybe I had just lifted too much. It started to become more frequent. Some days, from start to finish, I would have no energy, could hardly breathe, and my joint pain just kept moving further down my body and increasing with pain by the minute. Things didn't work out with my job and I quit a few weeks ago. Since then, I have been getting absolutely horrible joint pains. Once a couple months ago, at one point my wrist hurt so bad that it felt like someone was literally breaking it right then and there. It's been hard to do anything. I can't grip anything, can't lift anything, can't walk for very long, and stairs? Ha. So it seems like it would be the Remicade right? Well then I came across someone on Instagram who had Fibromyalgia. I had never heard of it so I decided to research it. All of the symptoms were things that I had been complaining about in my head but had come to be daily life. Like headaches; not a day goes by when I don't have one. And the over all sensitivity; I just can't handle it! Every noise feels like it's happening an inch from my ear, I can hardly drive at night because of the bright lights, I have a hard time listening to music which kills me, and every smell makes me want to throw up! I can't even have a tickle fight with my boyfriend without screaming in pain. Everything just hurts, everything aches, and everyday is miserable. Again, my parents won't listen to me. They think that I'm either being a big baby about it, or the "poison" is finally killing me slowly. I kept my mouth shut before for a year and a half which is the reason why my colitis became so severe. I don't know what to do? Am I overreacting? Is this due to Remicade? Or is it something more? I read that 30% of people with IBD suffer from Fibromyalgia and Rheumatoid Arthritis. I'm so depressed over this. I can't sleep. It's all I think about and I feel myself spiraling out of control. Please, I need some advice.
 
It could be because of the Remicade. I have also been on it since April and since being on it I have had migraine like headaches, light & noise sensitivity as well as joint and muscle pain. All of my gastro issues are fine, it's just the rest of my body now. What does your GI doctor say?! Last appointment I had they were concerned about drug induced lupus and I've been referred to neurology and rheumutology specialists. I just had blood work as well to check my Remicade levels, do see if they are able to decrease my dose or if I need to switch medication altogether. I would really consult your GI doctor about this.
 
Hey Carrie. Thanks so much for responding. I'm basically in the same situation right now. I am having my blood drawn later today actually to see my Remicade levels. My gastro doctor said she doesn't doubt that it is fibro and I should see a rheumutology specialist. But I mean you know how it is.. So many doctors, so many different medications. I don't want to take that action unless completely necessary because it's just another bill that my parents have to pay.. And I already make myself feel like crap about all of that anyways.. Which I know I shouldn't do! But it's really hard not to feel guilty, which is making this all the more depressing. You know? But thank you for the advice!
 

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