Have you talked to your GI about the pain and is he/she willing to admit that it could be the remicade?
I too am experiencing severe pain now and while there could be other causes, I am getting more and more convinced that it is due to or made worse from the remicade. The pains are in various muscles (arms, hips, calves), joints (toes, ankles, hips, knees). A foot doctor also told me I had tendonitis. It has been so bad on some days that I can hardly walk.
While it might be due partly to fibromyalgia, which I have had for years, (but have had the pain under control for years), or arthritis which has shown up on more and more MRI's, cat scans and xrays. I have had degenerative disc disease and some arthritis also for years and have not had this much pain. There seems to be some relationship, possibly to the weather.
If my memory of your posts is correct, you have been exploring this pain with many different types of doctors to no avail. I am wondering if I should even bother to bring it up to my GI or PCP.
Last year at about
this time I began to really explore these pains that I have. They felt so much like mono or something like that... that I was very worried.
In the order of events...
1. Saw my GI specialist. He said it is very hard to tell what exactly is causing the pains. He recommended I stay on Remicade. He knew I had had mono though, so he wanted certain levels checked that would help indicate if any of the lymph nodes he could not feel (stomach area) were swollen. These levels were okay, so I was able to stay on Remicade. I think what they tested were the actual viral replication of the epstein barr virus dna.
2. I saw my GP, who recommended an infectious disease doctor and an immunologist.
3. I saw the infectious disease doctor who was extremely helpful. He ran many blood tests on me including that epstein barr virus replication test that I mentioned, as well as cytomegalovirus and others. Everything came back fine.
4. Saw immunologist. Everything came back fine except a little low resistance to pneumoccocal (sp?) virus, so we set up an immunization for me.
5. Saw GI doctor again, still no answers from him. He said I would be looking at surgery if I stopped Remicade and Humira didn't work. He recommended anti-depressants, but said he wasn't sure if I needed them.
6. Saw a second opinion GI doctor. He tested to make sure I had UC not Chron's... thinking maybe my pains were Chron's related. UC it was. He suggested anti-depressants after speaking to first GI. I did not take anti-depressants... I hurt, it was a physical thing... not mental.
7. Called GI, asked for recommendation to Rheumatologist.
8. Saw a great Rheumatologist. He tested for muscle inflammation (there was none), and a couple other things like vitamin d level I think, and they were fine. He said he was hesitant to call this fibromyalgia or anything like that, said it could still be manifestations of the mono I'd had 8 or so months prior, but wasn't sure. He too was unable to say if these pains were possibly from Remicade.
9. Saw a homeopath doctor, who is licensed as a medical doctor in other states that let naturopaths register as MD's. Did a few different "remedies". One brought back UC symptoms completely... it was insane. Stopped that one. Found another that made my gut bulletproof, but I would become uncontrollably depressed within 12 hours of taking it. Nothing we tried took away my pains.
10. I worried, I stressed out (I had a lot of hard things going on besides the pains), and I worried some more. Then I researched again on the net about
Remicade causing these pains. Many other people have had similar reactions, and the pains went away when they stopped the medicine. So... after some reluctance I accepted that it was probably the Remicade, set aside all the mental straining for answers, and have been happier even if I hurt still.