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Non-GI symptom management (joint pain, mostly)

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Crohn's Disease
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gilsonal
Regular Member
Joined : Feb 2010
Posts : 53
Posted 4/11/2011 7:36 PM (GMT -8)
I'm in kind of a weird phase in my disease. My gastrointestinal symptoms are fairly well under control. Dietary changes seemed to help a lot. A recent colonoscopy showed little disease activity. Yet my joint pain is pretty significant, and is beginning to interfere with my ability to sleep and exercise.

We (my doctor and I) increased my Imuran dose by 50 mg but while it helped some with the joint pain, the mental dullness and fatigue was not tolerable.

Having failed on Pentasa, and apparently topped out on what I can tolerate for Imuran, a rheumatologist suggested Humira or Remicaid. But the side effect profile looks awful and its a fairly intense medication to take.

Does anybody else take anything to help with such symptoms? Is it just pain management? What was going on when you had non-GI symptoms but everything else seemed fine? I'm worried something else is going on but I've already been diagnosed as non-rheumatoid. I'm wondering what I can do to get my symptoms back under control.
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Atmosphere
Regular Member
Joined : Mar 2010
Posts : 220
Posted 4/11/2011 8:37 PM (GMT -8)
UMMM, who DX'D you "non-rheumatoid"????

See your PCP - I think. He could give you a referral to PT or something your Insurance covers. But not really sure who else is currently on your treatment team aside your GI/PCP...you left that part out
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gilsonal
Regular Member
Joined : Feb 2010
Posts : 53
Posted 4/11/2011 9:31 PM (GMT -8)
I saw a rheumatologist who did a bone scan to determine that my joint pain was not osteoarthritis. I'm looking into a pain specialist but hadn't considered physical therapy.
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heatmiser
Veteran Member
Joined : May 2003
Posts : 1671
Posted 4/11/2011 10:42 PM (GMT -8)
My docs have decided my pain isn't true arthritis so I take an extended release morphine. I still have to deal with pain, but this gives me the ability to work and be a bit more physical. It's a quality of life thing for me.
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gilsonal
Regular Member
Joined : Feb 2010
Posts : 53
Posted 4/11/2011 10:44 PM (GMT -8)
I wish I could get a doctor to do that for me, heatmiser, because Tylenol doesn't do anything for the joint pain. However, when I go in asking for something stronger my experience has been they think you're an addict, rather than somebody who has run out of other reasonable options. If I could just get to sleep at night, I can tolerate the daytime discomfort for the most part.
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heatmiser
Veteran Member
Joined : May 2003
Posts : 1671
Posted 4/11/2011 10:53 PM (GMT -8)
I know, I got lucky. I had been put on darvocet years ago after my pcp tried everything else (celebrex, bextra). So my new pcp in another state just continued it, but she had big concerns over the tylenol in it. I was the one dragging my heels about going on morphine, but when darvocet got pulled, I didn't have a choice. She was right, though, and it does work better for me. Still, I'm very careful, and only take it during the day when I need to be active. Sounds like you need it opposite of what I do. I tend to tolerate the night pain well and it doesn't keep me from sleeping.
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kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 4/12/2011 5:25 AM (GMT -8)
Aside from pain medication, my rheumy has consistently pushed me to get on stronger meds. He has classified my joint pain as enteritis arthritis. My GI poo pooed the whole thing until one day I showed up with my first pinky joint bright red and swollen. He then prescribed me sulfasalazine, which is an "old" RA med, newly in favor among GIs for effectively treating joint pain in IBD patients. My hand pain is about 95% gone. My knee and shoulder haven't been touched by the sulfasalazine, but they weren't the biggest problems to begin with, my hands were.

If your only med for the Crohn's is currently imuran, have you considered methotrexate? If that's not an option, I'd say your rheumy and mine would agree that the anti-TNF biologics are the logical next step. I think I'd rather take one of those than an opiate pain reliever. The scary side effects are very rare. What concerns me more about those is "using up" my options. I've seen too many posts on this forum about people who have LOVED their remicade but then can no longer tolerate it.

But I'm half a step closer to choosing that than I was a couple of days ago. I just had 3 days of PVCs, a benign but annoying heart arhythmia, every minute of my waking day. Maybe connected to Crohn's maybe not. But my rheumy's comment from a few years ago about getting a better quality of life out of my GI - I'm hearing that message more clearly these days.
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kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 4/12/2011 7:48 AM (GMT -8)
Oh, and one more comment. When my GI saw my red pinkie joint, his first change was not to add sulfasalazine - I forgot that I used entocort for a few months while I was building up my sulfasalazine dose. The entocort was meant to quiet down any small bowel inflammation I had, which we theorized was causing the inflammatory joint pain. You might consider that as well.
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