Hello everyone. I'm just wondering if anyone is experiencing the same things I am with Remicade. I started in November for Crohn's Disease. I have always had "Crohn's related arthritis" with my CD, so I am used to joint pain. The remicade seemed to be working just fine. After the initial starter doses, I went every 8 weeks. Then, during my last cycle, at week 6, I developed (literally overnight) such tremendous, migrating joint pain. My ankles felt sprained, I couldn't lift my arms above my head to dress myself, I could not walk unassisted. Then the next day, it would be my knees or hips, writsts or hands. Obviously I called the Dr. The did the Prometheus test and it showed that at 6 weeks after my infusion, there was NO TRACE of remicade in my system. So my Dr. got me in for an infusion, scheduled me for every 6 weeks instead of 8 and upped my dose a bit. After the infusion, I was back to normal.
Now, at 3 weeks after the last infusion, I am in the same place. They sent another Prometheus test out, but are still waiting on results. Dr. prescribed prednisone to help with joint pain and that seemed to help some, but over the weekend I had to double my dose just to stay out of the E.R. I know that is dangerous, but I was desperate. I hate prednisone, but it was the ONLY thing giving me any relief. I was using Voltaren gel, Lidocane patches, Vicotin, Tramadol....nothing is touching the pain AT ALL.
So until my Dr. gets the results back, he doesn't want to do anything and suggested I see my Rheumatologist. Luckily I am able to get in tomorrow, but in the mean time, I am still in so much pain I can barely move.
Has anyone else experienced this???? It is really the most excruciating pain it is unbelievable.