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?
Tonight I had a repeat of something that happened to me several months ago. First my right hand seriously started hurting and just when I’ve written it off to computer work, it moved to pain in my toe than up my left thigh into my left should and severe joint cramping up the inside of my right leg from the knee to almost top of calf. I have been taking remicade since Aug 09 (probably 6-7 infusions since then). Nobody has given any real medical advice so if I find some I’ll post it here….Thanks for posting, helps to know I’m not the only one going through this (was wondering if was having a heart attack!)…Michelle
I don’t know if anybody is still on this post, but I too am having the same problem. Remicade for 6 months for UC = cannot exercise most days of the week + simple tasks are becoming difficult (i.e. opening a jar, tilting my head down, etc). The pain is now in my back and neck. Did anyone find a solution?
oooh.. that sounds scary – I can understand why you’d wonder about a heart attack. Maybe it’s related to nerves? I don’t know. It seems like so much can be affected by crohn’s disease that you just don’t really know what’s going on. Hope you are feeling better and found something to realize the weird pain.. or that’s its gone away (for good!).
Sean.. I ended up having to switch medications. I was having what my doctor called an allergic reaction to the remicade.. sounds very similar to what you are dealing with. The humira made a world of difference for me – but after more than a year, I still have some left-over joint aches I didn’t have before. Nothing major, but it’s there. How are you feeling these days? Anything different?
I’d really like to hear back from some people who posted on joint pain from remicade.
I have been on remicade for over a year for PA – 7mg every 4 weeks and after stopping 4 weeks ago so i could switch to stelara I got wicked joint pain in my wrists, knees, shoudlers, colar bones. I don’t even want to get out of bed.
1 – Does the pain go away eventually from stopping remicade?
2 – Anyone know if stelara will help with the joint pain?
Hi all
I do not have crohns but have psoratic arthritis & psoriasis. I have been on remicade for 1yr. the initial results were fabulous!!! however every time i am in the sun i get really bad rash on arms. no prblem they tell me since my skin is clear& normal now that normal skin dont like the sun who knew LOL so now i use spf 70 & hydracortisone cream to take care of the itch & i can hold the rash @ bay < anyway back in Novemeber i had to be pulled off remicade as my liver enzymes kept going higher & higher,Rheumatologist determined it was the remicade & pulled me off for a few months til the enzymes came back down to normal. we now susposedly watch me closer.i have been back on remicade since march of 2010 . my symptoms keep coming back so dr bumped up my dose of remicade. I dont even make it 3 weeks without symptoms coming back. . so my last remicade was right before memorial day & about 2 wks after that i developed the traveling joint pain. Omg it is horrible. today it is thumb,wrist, one toe & shoulder. Last week it was wrist,toe & ankles along with one wrist. it is gettin worse & i never know where it will pop up nxt. luckily i take percoset & flexeril regularly for pain associated with mydegenerative arthritis & disc & bone disease. here it is the point to this post!! How do u get dr to believe the remicade is causing an issue?? dr always tells me if it were a reaction to the remicade that it would happen during the infusion or shortly thereafter , her answer ?? u guessed it we bumpin up the remicade again on July 6th !! what to do im scared if the traveling pain is from the remicade bumpin it up will kill me
how do i get dr to believe the remicade is @ issue she always chalks it up to something else as i do have lots of other problems
thanks for letting me vent & any insight or info would be greatly appreciated
denise
Seriously…does anyone ever write back on this thing…my elbow joints are killing me . I have been on remicade for about5 months and out of the blue my elbow joints ache to no end….
Hi,
I just found these posts. I have UC and have been taking Remicade since April 21st of this year. After my last treatment on June 28th, I started to have pain in my ankles, knees, hips, hands, and fingers. It doesn’t seem to travel – it is always in the same joints. Saw my dr. on Monday – she did not think it was the Remicade either – told me I need to see a rheumatologist. I didn’t have all of this pain until right after my last treatment. It sure seemed like it was related to the Remicade treatment, which she is bumping up and scheduling sooner since it is not helping my UC at all. I also have swelling, intense itching, and my allergies are worse than ever. Is all of this related to the Remicade?
Sandra – remember, if the remicade isn’t helping you, you have the option to tell your doctor you don’t want to take it any more. But you have to willing to say something.. which isn’t always easy to do. I don’t know if your other symptoms (swelling, itching, allergies) are related to the remicade, but it seems like the swelling and itching could be as those are also symptoms of allergic reaction. You could talk to your doctor over the phone before getting the next remicade treatment – let her know you aren’t feeling real comfortable with it, that you feel like these other symptoms are related to it. She could either alleviate your fears, or may compromise with it – maybe try it one more time, if you don’t show improvement, then move on to something else. For me, it took several months before my joints started feeling better after stopping the remicade.
When I read all of these posts on muscle and joint pain I have such mixed feelings. I’m so glad i am not the only one and so sad that someone else is going through this medication hell. I have been on remicade for 18 months. I have developed joint and muscle pain that has become increasingly worse to the point it is now debilitating. My GI referred me to a rheumatologist who diagnosed fibromyalgia which I do not believe for a minute.
This pain is caused by remicade. I have muscle pain and joint pain in my knees, hips, elbows and shoulders. Because of this pain my life has been he’ll. Not only do I have this pain but I have had one infection after another and been on antibiotics all the time. My GI says it’s not related. I fired him.
Saw my new GI today and she confirmed that it’s the remicade and is switching me to humira. I just shake my head at what we are forced to endure with this dreadful disease.
Feel free to email me and we can commiserate together.
Thanks for the forum to vent!
I just came across this in doing a google search. I just had my lower back x rayed on Thursday because I have had severe spasms and pain. I get my 4th Remicade treatment in two weeks so I hope it isn’t that. My Crohn’s seems to be in remission but the back pain is horrendous! Couldn’t even take my cycle out this weekend!
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