I did not want to hijack this post by a fellow forum member, however, I feel it is important for everyone to know about Remicade's effects and how it has affected so tragically someone's life. I feel for Kelli, and hope he gets better.
https://www.healingwell.com/community/default.aspx?f=38&m=2128462
I'm not on here much and I'm more of a lurker, but I thought everyone on Remicade needs to hear this. I've been on remicade for close to 3 years now and it did help me get into remission, but about 1 1/2 to 2 years ago I started developing really bad joint and muscle aches in between infusions. I was sent to a rheumatologist at the time who did testing (all were negative) and couldn't give me an answer. He told my PCP that he didn't even feel it was a rheumatologic problem. Well, the pain was progressively getting worse and my fingers and feet were swelling, so they upped my remicade does to every 4 weeks instead of 8 to help deal with the pain. It got to the point about 6 or 7 months ago that even remicade wasn't helping with pain and i was having to go to a pain management doctor. Two months ago, i became really short of breath and had a chest ct which showed a small pleural effusion and atelactasis in the left lung with the effusion. Was put on antibiotics because doctor felt that it might be a bacterial infection. I started to feel better and one month later in late April, i was visiting my grandparents and on the drive down developed chest pain with radiation into the left shoulder, jaw, etc. I waited 2 days till leaving the grandparents (they're both in hospice and grandma was so ill she couldn't be left alone) and met my aunt at an er 2 hours west. I was diagnosed at that time with a Pericardial Effusion. At this point, my pcp busted his butt to get me into mayo since we couldn't find an answer. I've just returned from mayo clinic and I was diagnosed with Inflammatory arthritis and Remicade induced lupus with shrinking lung syndrome. At this point, they can't tell me if the arthritis will go away or not, because they're not sure if it's from the uc or lupus. They also can't tell me if i'll regain the lung function that i've lost. Currently my function is 42% for my age. The pulmonologist said that there has never been a reported case of the shrinking lung syndrome in drug induced lupus so they can't give me any answers to how this is gonna progress. I want everyone that develops joint pain with the remicade infusions to know to keep fighting for answers. When i was tested this time, my ana and the anti-dsna were postive. They were not when i was first tested. If I had just set down and believed that it was all in my head or I would never have an answer, there's the possibility that i wouldn't even be alive a few years down the road. Please pay attention when taking these drugs and if you feel that there is a problem demand answers.
Kelli
Kelli/30y.o.
Ulcerative proctitis spring 2001.
Pancolitis Oct. 2003
Left-sided colitis March 2006.
Current Medications: 175mg Azathioprine, 2000mg Sulfasalazine, Remicade every 4 weeks, 25mg Nortriptyline, 40mg Protonix, 50mg Tramadol as needed