I had my last dose of remicade (also called infliximab) a few weeks ago. I am feeling better. At least, less abdominal pain – not gone, but less. However, about a week or so after my last IV treatment, I started getting the most incredibly sore muscles and joint aches. Muscles hurt to touch, hurt to move. Joints were so achey. So much so, I won’t carry a basket of laundry up from the basement. It’s hard enough for me to get up.
I’ve procrastinated in calling the doctor. I suppose I would just rather whine about my aches and pains than do something productive about it. No, really, I expect my GI doctor to tell me it isn’t related. And my family doctor to give me more medicine – afraid of maybe muscle relaxers, because I know they’ll knock me out. I have enough issues with not having energy.
Honestly, I have had more energy lately than in a long time. I still get tired through the day and have to just close my eyes for a bit. So far, other than this intense muscle and joint pain, I’m happy with Remicade – more energy, less pain, it’s good.
Out daughters baby shower is this weekend. I think I’ll call the doctor on Monday and see what he says about the muscle pain. The joint pain is in my shoulders and elbows (less so here), my hips and knees. Muscle pain is arms and legs – and across my shoulder blades – particularly the muscle right under my left shoulder blade…. a sharp, piercing pain that feels like stress or tension. But happens out of the blue, like just sitting on the couch, or my computer chair (which isn’t a computer chair, it’s a plush comfy chair).
Any remicade users out there suffering from crazy muscle and joint pain?
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Hi there,
You’re not crazy but you’ve got yourself a nice allergic reaction to remicade. I have it also and we’re not alone…many others have it.
Good to hear that it helps your crohn’s but if the reaction becomes anything like mine you’ll probably want your crohn’s back. It’s debilitating. So far I have had it for about 18 days with no end in sight. The doc put me on prednisone which does help but prednisone itself is a horrible drug. Apparently we just have to wait to see when the reaction will subside on it’s own but I stopped remicade because for me it was like crack. It’s a vicious circle with no good end. Going on to Humira next which uses synthetic binders instead of mouse proteins which are what’s causing the problem. Good luck
I too am having terrible joint pain – so bad I am going to have to go to the doc. It MUST be the Remicade – I can’t think of what else it could be – terrible pain in the shoulder and elbow and now my knee -
I have been receiving Remicade for approx 5 years. In the past year i have developed a nasty little side effect. The joint pain and muscle pain is severe and it roams around the body, never knowing where it’s going to go next. Usually I make it 8-10 weeks without the pain recurring, but here it is only 3 weeks after my last remicade and my right foot hurt so bad i could barely walk on it last night. Very disheartening as Remicade works for my Crohn’s and have been symptom free for 2 years. My Doctor and I do not agree that it’s the Remicade the causes the joint/muscle pain. But after only 3 weeks of the last infusion, I am now totally convinced it is the Remicade and after reading numerous posts of others who suffer the same. Now I am wondering how the get rid of these joint/muscle pains, it’s a bit scary. will be call the GI this coming week.
Thanks for listening.
Hi, i have just stumbled across your post and i have had a similar experience. I have been taking remicade for just under a year and a few weeks after my last treatment i too suffered from immense joint and muscle aches. The worst of my pain seemed to be in the wrists and knees but was felt all over and made me feel like an 85 year old not the 21 years that i actually am. I am currently waiting for my gastroenterologist to get back to me but he has suggested swapping on to a similar drug beginning in with a and ending in mab…i can’t remember the full name!It is another anti tnf but is not fully approved etc. The aches and pains have gone for now but like yourself i am worried about them coming back and preventing me from living my normal life. I hope you get yourself sorted…Tara
Hello all!
I started Remicad in early summer of 2009. I have noticed the past 2 treatments, that my muscles ache so bad that I can’t move my hands, arms, knees or ankles. It doesn’t all happen at once but takes turns. Last week, I couldn’t unbottom my jacket because my hands were so sore. I also work out 2-3 times a week, pilates included and have for years, and I find it incredibly hard to do so now, my muscles shake so bad and I never feel like I am getting stronger in that sense. Not sure what I am going to do about it. We thought Remicade was stopping the fistulas, but I am headed to surgery this Friday for a new one
I stumbled onto this site as a result of a random search for sudden onset traveling joint pain. I was diagnosed with Crohn’s in Sept. 08 and have received 5 remicade treatments. All seemed to be well until last week (about 6 weeks after my last infusion) when I literally couldn’t move out of bed. Such pain in my shoulders, hands and wrists that brings me to tears! I wondered if Remicade could be the culprit.
I think chiropractic is the best for joint pain & muscle pain. The main treatment involves manual therapy, including manipulation of the spine, other joints.
Chiropractic could be best in normal circumstances.. what about when the pain is from an allergic reaction?