Big time joint pain with pred?

Hi all,

I know that most of us have ridden the pred pony throughout the course of our disease. Besides the *common* side effects (i.e. moon-face, weight gain, camel hump, etc.) that you've experienced, what uncommon ones? I, personally, also have developed very sensitive teeth, for example.

But the thing that is debilitating me the most is the seriously ridiculous joint pain. I had been on pred from February to July (tried to taper in April/May but that was a bust). I tapered pretty slow...2.5 mg/week...and the Imuran and Remicade apparently finally kicked in because I'm coming up on day 15 with 0 pred and I feel great. Surprising great. GI wise, that is. I have no stomach problems right now--no urgency, formed stools 1-2 times a day, no dietary restrictions right now. After flaring from September to May, and having such a restricted diet of foods I could tolerate, I feel so normal/good right now I can hardly believe it.

Except for this tremendous joint pain, that is. From the moment I wake up to the moment I fall to sleep, I am in a great deal of pain in my shoulders, hips, and knees. It has become difficult to roughhouse with my toddler; it's become difficult to walk up the stairs holding my 6 mo. old. Squatting down to pick up a toy or some clothes off the floor is like a personal nightmare for my knees. Even something simple like putting on/taking off my shirt makes my shoulders scream!

My GI has not been much help with this. She says it's all part of UC--inflammation, inflammation, inflammation. But my UC is sooooooo much better. I would say I'm definitely in remission. And I've never experienced joint pain before (I'm 39), until I had been on prednisone about 2 months. So now I've had severe joint pain since about April.

I thought that once I got off the prednisone, my poor joints would start feeling better, but they haven't. In fact, things have escalated and now the joints in my feet hurt as well!

I know that some of you have had your joints damaged by prednisone use (avascular necrosis, osteonecrosis, etc). How did you know? Was it just unrelenting pain? Who helped diagnose you? Your GI? Your regular doc? A specialist? I'm not really comfortable with my GI's determination that my joint pain is nothing serious and will resolved itself. I'd like to pursue this with a different specialist, but which one? And what tests, if any, should I expect/ask for?

Thanks so much for any advice you can offer! I appreciate it!

Ta and take care,
Lisa

One other thing to consider - some or all of the joint pain could be coming from the Remicade. After my last infusion I had severe joint pain for a few days. There are others on here who had joint pain for months after getting their last Remicade infusion.

Pred withdrawl on the joints is a killer. I was on pred for over 2 years and the joint pain I suffered after I stopped taking it was miserable. I agree that you should get a DEXA scan. If that's clear than you just need to ride out the pain. Like Eva Lou says, the pain will minimize over time.

Sue

colah, yes i definitely experienced joint problems and also have osteopenia. i had to use a walker during the majority of my 3.5 month course of prednisone. i also had to live in the living room because i couldn't climb the stairs to my room- had to sponge bathe in the kitchen for a while. i developed neuropathy in my feet from pred. so i will never take it again. it just did my body over and i was still going about 15x a day while on it.

My family doc sent me out for mine.