Arthritis during Remission

[nl88]

Hello! I have browsed the forum for a while but this is my first post I have been diagnosed with Crohn's since 2009 which has been very active until about 6 months ago. An endoscopy, colonoscopy, and pill cam indicate there is no active Crohn's at this point (REMISSION YAY! :biggrin But of course, it is never that simple. Starting right after all of those scopes I started to have low grade fevers (99-101) that persisted for about 6 weeks accompanied by intense joint pain. Literally every inch of my body hurt, but my spine seemed to be the worst of it all. The fatigue was unlike anything I have ever experienced. It was hard to lift my head off the pillow and some days I would sleep 18+ hours with no relief. It seems the situation is not as extreme at this point although all of the symptoms I described are still present. My back pain seems to be getting worse with each day to the point that I can't sit for more than 10 minutes. I am getting conflicting medical information from the doctors I am seeing. So far three doctors (my g.i. doc included) have told me that Crohn's arthritis only flares with the Crohn's. A new rheumy is telling me that is a bunch of b.s. and everything I am experiencing sounds like uncontrolled inflammation from the Crohn's. She is considering readjusting my Crohn's medications or adding another immunosuppressant to the mix which is why I really want to understand how this all works. I have FINALLY, after much trial and error, found a combination of medications that has lead to remission and I am hesitant to mess with it. My question to everyone is have you experienced arthritis during remission? If so was it related to your Crohn's or something seperate? Thank you so much for your advice!

 

[yeldarb49]

nl88,

I had severe joint pain only once, it was right after I was released from the hospital after my first Crohn's flare in 1989. It was in my knees and terrible pain. I took some major pain meds for a week and it went away. My GI said it was crohns related inflamation. Not sure if this helps at all but I feel for your pain as it my experience with it was more painful then the Crohn's itelf.

Yeldarb

 

[nl88]

It really can be just as painful! I'm glad you haven't had to deal with the joint pain since then! I have also experienced joint pain/tendonitis during flares. As if the Crohn's pain wasn't bad enough!:thumbdown:

 

[sfmreb2]

I had floating arthritis with my crohns for about 10 years. After I started with Remicade the arthritis disappeared. It was never as bad as yours sounds like.

 

[Jennifer]

You may simply have arthritis. Crohn's can make you more prone to having it. I'm in remission as well and my x-rays have shown that I have Degenerative Joint Disease/Osteoarthritis. While a flare can make your joints hurt even more, arthritis in general acts up at anytime. So far Entocort has helped with my hip pain but I imagine that once I'm off it the pain will return. There isn't a whole lot you can do for arthritis other than pain meds, steroids and trying out supplements that help lubricate the joints (for instance: glucosamine chondroitin). What you'll want to know if you don't already is find out what type of arthritis you have and go from there.

 

[DustyKat]

If what you have is Ankylosing Spondylitis (AS)...

Definition: a chronic inflammatory disease of the axial skeleton with variable involvement of peripheral joints and nonarticular structures. AS is a form of spondyloarthritis, a chronic, inflammatory arthritis and autoimmune disease. It mainly affects joints in the spine and the sacroiliac joint in the pelvis, and can cause eventual fusion of the spine.

...then it progresses independently to what your IBD is doing. So your IBD can be under control but it continues to flare.

If you have peripheral arthritis then it parallels with what your IBD is doing, so when your IBD flares it flares and when you are in remission it is also in remission.

Dusty. xxx

 

[nl88]

Thanks everyone! DustyKat, I was actually referred to a Rheumy because my gi wanted me to be evaluated for spondyloarthropathy. The reason I am so confused is that the rheumy is telling me she doesn't think this is a separate condition, and that the Crohn's can be manifesting as inflammation and arthritis even during a period of remission. I'm getting so much conflicting information that I don't know which direction to go! If you have had to deal with arthritis, what type of doctor do you see? I did a search online for back pain doctors, and noticed that there is a spine center that is highly rated not too far from me. The only concern I have is that it is primarily a pain management office, and that is not what I am looking for at this time.

 

[DustyKat]

I'm sorry I didn't make things clearer. AS can be an extra intestinal manifestation of IBD and that was the context I was using it in, so not a separate condition but rather an extension of an existing one. In that case the rheumy is right, even though your Crohn's is in remission AS can still be active.

Even though the conditions are related the systems affected are completely different so if it were me I would be seeing the gastro guys for my gut and the rheumy for the back pain.

Dusty. xxx

 

[nl88]

Oh, got ya! That makes sense, I'm just not sure why she didn't tell me that from the start! I wish doctors would tell you their WHOLE thought process, but I guess they don't want to talk until they know something for sure. I am waiting for her to talk to my gastro doc and we will see what he says! I'm no good at waiting!

 

[DustyKat]

Waiting is the pits!

Good luck! I hope they good communicators!

Dusty. xxx

 

[Jennifer]

If you have had to deal with arthritis, what type of doctor do you see?

First of all if you have pain in an area that doesn't go away you see your GP and they do x-rays and sometimes MRIs to see what's causing the pain. Once you're told that you have arthritis and what kind you are sent to a specialist to either manage the pain (pain management) or your symptoms (rheumatoid specialist). Since you have IBD a rheumy is best.

 

[nl88]

Well at least I am on the right path. Now I wait and see what the doctors decide is best! Thanks for your help