Joint pain with Remicade

[AMMAW1]

Hi, I have UC and have been on remicade for 5 months. The doctor's have just taken me off the treatment. I have joint pain so bad I can't stand it. It started in my wrist, hands and fingers. Now it is in my shoulders. It is excruciating to raise my arms.

Since they have taken me off, will this pain eventually go away? My skin has also been in horrible condition. My back is scaley and looks like an alligator.

They are now saying that since I can't take the remicade and since my colon is so diseased, they are wanting to remove my colon. Anyone here experienced that yet?

 

[SarahBear]

Welcome to the forum, AMMAW1!

I personally don't have any experience with Remicade and joint pain, but I've moved your thread into the Remicade section so that you can get some more detailed responses.

I hope you feel better soon. :hug:

 

[AMMAW1]

side effects from remicade

Sarah, thank you so much. They have now officially taken me off Remicade as my joint pain had me bed ridden all weekend. My issue is ulcerative colitis but we are all sort of in the same fix. I will say prayers for your healing....

 

[KayleighMeek]

Sorry to hear you are suffering at the moment and hopefully it will get better soon.
I don't have UC but I have crohns colitis and I suffer quite bad enteropathic arthritis to the point where it stops me walking. I just wanted to mention it so if the joint pain continues it may be linked to IBD. I asked my dr if having surgery would improve my arthritis symptoms and he said there is no way of knowing it could still be an issue but I don't know if this would be the same for UC.
If it is the remicade that caused the joint pain I would have thought once it out of your system the pain should subside. X

 

[AMMAW1]

Thanks Kayleigh for the info. We are hoping that since my last treatment was about 3 weeks ago, things will improve. Actually my wonderful GI doctor put me on steroids(which I hate), but it sure got me moving again. Of course, they are temporary, but hopefully since I WILL NOT be doing the remicade any longer, I can get back to some kind to a normal life.

Sweetie, good luck with your crohns colitis. I am so sorry you are suffering with this condition. Prayers going your way!

 

[nogutsnoglory]

The alligator skin might be psoriasis. Remicade can kick that in along with joint pain. Can you try Humira or Cimzia before attempting surgery? Those may also help the joint pain and skin issues.

 

[AMMAW1]

Actually, my GI doctor has posponed surgery. He says we have a few other avenues to travel before we throw in the towel.

Either the Remicade makes a poster child out of you and it will take you down. I laughed and said I couldn't win a lottery, but I can be the one that Remicades takes down.

Thanks for responding to my post.

 

[nogutsnoglory]

I'm glad they are going to try another route before surgery. It sounds like they are a little wishy washy having said you need to remove the colon and now saying medicine might be enough?

 

[CC1295]

Ammawi, what you describe here is EXACTLY the symtoms I had. Joint pain, scaley back and fatigue that kept me in bed for days..... I went in for some blood tests and the Doctor called me last night to inform me I have Drug Induced Lupus. They will no longer give me the Remicade and said I should get better as it leaves my body. I was just curious, did they mention the possibility of Lupus to you? I can say the Remicade put me in remission with my Crohn's but Lupus isn't much better.....
All my best for you to get better!

 

[AMMAW1]

Chris, the Remicade didn't even throw me in to remission. They did mention Lupus because of my back and too said it will get better. Over last weekend, I couldn't even move, I hurt so bad. Last Sunday I called my doctor and he called me in Prednisone. After the first dose I could move again. I am in the weening process down with it.

I have taken Flagyl, Cipro, Canasa and Prednisone. I started the Remicade 01/13. I talked to lots of people when I would get my treatments and they loved the Remicade but OMG it just about killed me.

Chris, I hope you will continue to get better. My prayers are with you!