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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I have also tried diet, like Specific Carbohydrate Diet which was helpful when having a bad episode of Diarrhea and Acute Crohn’s but did not work so well on joint stuff when in remission. Have also been tested for Celiac multiple times. but will look into diet suggestions. Has anyone tried medical marijuana? Just becoming legal in my state?(NJ)
Started Remicade in fall 2011. Have had UC since I was 18 and I am 42 now. Joint pain since starting Remicade. I have had 3 treatments. Seeing Gastro tomorrow. I feel older and stiffer by the day and am having night sweats. I felt the joint pain from the beginning, but the Gastro said it was due to stopping the prednisone. I doubt that now. I have migrating joint pain too–neck, shoulders, elbows, wrists, fingers, hips, KNEES, ankles, feet, toes. I plan to ask for a test to see if I am building up antibodies, a test for RA and Lupus, and a test for Leukemia (night sweats which have gotten to be a big problem in just the last few weeks-getting worse.) I am considering not continuing with the Remicade. It is better than the prednisone that made me gain 20 pounds, but this medication makes my body feel stiff and ancient. I periodically had joint pain over the years associated with flares, but nothing that made me feel stiff like this, and now feel the pain in joints that I never did before. There is no swelling, where the joint pain in the past due to colitis came with swelling in the hands and feet, around the painful joints. As I type this, It seems ridiculous not to go off this stuff–but afraid of the side effects of other things. Don’t want prednisone and had the MP-6 induced fever so that is out.
Lynn.. so sorry to hear your issues with remicade. I will say that if and when you go off remicade, if it’s an allergic reaction you are having, it will likely take a few to several months before you start feeling “normal” (I use that loosely) again.
Have you tried Humira yet? I did that for a year or so, and that at least got my crohn’s into remission. I quit taking it when I realized my periods had gone wonky and I linked it to humira. Now, I’m thinking it might just be peri-menopause. Oh joy. But I’ve been off humira well over year and still doing ok. Not great, not like pre-crohns, but better than I when I was diagnosed.
Good luck with your appointment.
Dede – as for medical marijuana.. I have tried it a couple times, but I don’t deal with the high very well… I made herb butter <grins) a few months ago, but it stinks terrible and I've been reluctant to try it. I hear using it in a recipe, like to use in place of butter in a cookie recipe, or brownie recipe or fudge is the way to go.. and I did buy the stuff to make rice crispy treats, but as yet, I haven't done it. My understanding is the high from it is different than smoking it, so I may tolerate it better. Have you tried it yet? Would like to hear your findings.
I’ve been on Remicade since August of 2010 for Crohn’s and have been *miserable* with sore joints recently. I’ve always had bad pain in my knees from old sports injuries, but I feel like I have arthritis… Sore all the time, difficulty changing positions from sitting to standing, climbing stairs, and I work in a daycare, so chasing four-year-olds around the playground in the cold certainly doesn’t help. My doctor always says “we’ll keep an eye on it” and drops it. Does anyone have ideas on how to help the stiffness and pain?
Hi Malaise,
The gastro said no more remicade, sent me for bloodwork (all negative), chest X-ray, and to a Rheumy. Both Dr.’s said the remicade would be out of my body by the next (cancelled) infusion date-Feb. 11. Rheumy did more bloodwork and I go back in two weeks. Every joint she examined was either tender or painful to some extent. She says it could be RA (doubt it because the test was negative), medication induced Lupus, or just from the Colitis. We will see what the bloodwork shows when I go back but I suspect nothing- the Lupus test came back negative too when the Gastro tested for it. I have not tried Humira, and am not very anxious to try any more bioligics with side effects. My insurance doesn’t cover Humira either, although maybe that could be overridden. The copay would then most likely not be affordable though. Waiting to see what happens with Colitis, (could be brewing-not sure), the Rheumy’s bloodwork, and joint pains when the remicade is out of my body. I know they may take a while to go away. I will keep you posted. Did find out I am NOT in perimenapause yet through GYN’s bloodwork. (Yay!)
My 13 year old daughter has Crohns. She was diagnosed a year and a half ago after 2 years of testing. It’s been such a rough road for her. She has been on 6-MP since October 2010. In November her GI Dr said it wasn’t working anymore after she was having a bad flare that put her in the hospital. We started Remicade and kept her on the 6-MP also. He added prednisone too. She has been off prednisone since Christmas and stopped the 6-MP yesterday but she has been missing a lot of school due to joint pain. It started in her back but is all over now. She said she feels like an “old lady” and cries all the time because she hurts so much. The GI Dr ordered Elivil to hopefully help with the back pain but it is going to take at least a few weeks to see if it’s going to work. I wonder if something else could be going on. Is it from the Remicade or could she have RA? Is it due to Crohn’s? I am losing sleep over this, I’m so worried about her and it’s tearing me up to see her in pain! I wish it was me instead of her! Any suggestions on what it could be or has anyone else had these issues? For all of you that have any fort of IBD, you are in my prayers, it’s a horrible disease. My 9 year old is starting the resting process at the end of the month to see if she has Crohn’s as well because she’s having issues also. I pray for a cure!! Thanks to all who take the time to read this and respond. Any advice will be helpful!
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