bone/joint pain

[nrgmom]

Hi,

I was recently (2 weeks ago) diagnosed with Crohn's disease. Actually, I still have some more tests to go, but my doc says he's fairly sure it's Crohn's and not ulcerative colitis. Anyway, I started prednisone right away and the major symptoms stopped in less than a week. But I have lots of joint and bone pain, including a pretty severe case of TMJ.  When I wake up in the morning I'm in a good bit of pain - knees, wrists and elbows and of course the TMJ - then I take prednisone and usually by early afternoon I feel much better. From what I've read Crohn's can cause temporary arthritis that goes away as the inflammation in the colon goes away. I guess my question is can I expect this to continue for a while? Am I going to be in pain all the time after I stop taking steroids? I'll be done in 2 weeks. I really just want to know what to expect so I can prepare mentally for it.

Thanks!

[Mandy3580]

Hi All
I was diagnosed with crohn's collitis about 4 yrs ago I am on 800mg asacolon 3 times per day, 10 mg busupan 3 times a day, and also 100mg imuran per day. recently I have been getting a lot of pain in my lower back and hips. each time it happens now it appears to be getting worse lasting up to 2 week. my doctor is now refering me to an orthopedic consultant. I am worried as I am missing a lot of work due to the pain as I am a social care worker it is pretty full on on the best of days. my bosses are starting to ask a lot of questions about long term problems. I was wondering has anyone else had  similar symptoms or found anything that has helped with trying to continue to work full time. would appreciate any insight.

[PrincessKatie]

When did the arthritis symptoms start? Did you have TMJ before? I have Crohn's and I get joint pain, but I've had TMJ disorder ever since I was 13. I wear an appliance. In my case the two aren't related, but it depends on why you have TMJ. Slipped disc? fluid? muscle spasm? grinding/clenching? I think that since Crohn's is a major disease, almost anything can be connected to it. That doesn't mean everything is. If you let me know more details I might be able to give you a better answer.

[elroque]

My biggest symptom with Chrons is arthritis. I have been steroid dependent since being diagnosed with it for close to a year. Every time they try to take me off of Prednisone I flare up something fearce with the diarrhea, mouth sores, lethargy and the arthritis gets so bad I swell up in all of my joints and cannot move any of my limbs. They have been experimenting with different medication to try and get my Chrons in remission and get me off the steroids completely but even during my good days my arthritis is still there.

[lizziecee]

Hi there - difficult to know where to start in responding.  I don't understand the acronym TMJ - could you elucidate please?  First of all, you need to know conclusively if you have Crohn's or Ulcerative Colitis, which is determined by biopsies and looked at by a pathologist, because although they are both auto-immune diseases, they are quite different in histology and as far as treatment goes.   I was dx with Crohn's in 1970 when I was 25 yrs old (some 15 different ulcers and crypt abscesses) so resections were not advised, and put on to 60 mg a day of prednisone. That was all there was available in those days. This has now, some 38 yrs later played havoc with my bones - low bone density and osteo-arthritis in both hips, feet and hands.  My problem is exacerbated by breast cancer - nothing to do with Crohn's, just one of those blips, and taking Arimidex, which does not protect the bones like tamoxifen does, the bone density and pain in my hips, hands and feet has got exponentially worse in the last 4 yrs. Steroids are not the best meds these days for long term remission but great in the short term for bringing a flare under control.

The sooner you can get off steroids, the better - they will bring a flare under control, but are not good for long term remission from Crohn's.  You may be lucky and only have one or two inflammatory episodes,as many patients do,  but if the disease is intractable, you may need to be on long term immuno-suppressants. I self inject methotrexate weekly and have d it to be a life saver. I no longer have flares, requiring hospitalision, blood transfusions, IV steroids etc. or rectal haemorrhages. My life has been transformed.

I never had arthritis problems, when on steroids, but eventually in the long term, they do catch up. I didn't have temporary arthritis for some 33 yrs, but boy, I now do have permanent arthritis.  I am 63 yrs old now, but it is not degenerative, all caused by those years of steroids.  It is an unusual form of arthritis particularly endemic with Crohn's. I don't think the gastros know why, but is a medically recognised fact.

I think you will be fine after you finish steroids and hope you don't have a recurrence.

Take care,
Liz in Cornwall, England.