Onset of Joint/Muscle Pain with Remicade

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PatrickL

Joined
Apr 12, 2012
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I have a question for those of you that have started Remicade recently enough to remember what side effects you noticed. I started Remicade just under a year ago and have noticed a gradual onset of increased pain in joints and muscles, primarily those that get more use - shoulders and knees, and thigh pain that seems to be muscular in nature.

Have any of you experienced this? I've done some research into joint pain caused BY Remicade, most results are anecdotal personal stories of people that had not really experienced arthritic manifestation of Crohn's, but started Remicade and got new pain.

I thought Remicade was supposed to help not only with the Crohn's but also with arthritic pain. Now I'm wondering if it was Humira that was supposed to be better for the joint issues. My personal opinion is - what's the point of being on a powerful drug like Remicade if it causes symptoms that most Crohn's patients turn to drugs to alleviate? I could deal with a flare or two per year if it means keeping my immune system (and my bank account) in good standing. I'm afraid I won't get a straight answer from the GI, who I respect a lot, but I understand their job is to treat, not experiment based on my hunch that Remicade is causing my issues.

APologize for the long post, any insight would be appreciated.
 
My son already had joint pain before starting remicade but I've had friends that have experienced what you are describing. It's so hard to differentiate between all the issues of CD and the treatments available for them. If you feel strongly that the remicade is causing you more issues than it is alleviating then approach your GI and have a frank discussion about your concerns and remind him that the goal is not only remission but QOL and you feel remicade is interfering with this. A Rheumatologist may be able to give you some answers as to whether the med or something else is causing your joint/muscle pain. Hope you are able to resolve these issues soon!
 
Thanks for the reply.

Some further background for anyone else with insight. I did have some joint pain prior to Remicade, but only during flares. The CD is in remission right now, and I mean complete.. ESR, CRP are both low/normal. Digestive issues are gone. Yet the arthritic-like aches are just increasing. I've also been to a Rheumatologist, and RA factor was negative.
 
I've been on Remi for over 2 years, I had been off of it for 7 months due to surgery/infection/MRSA and recently started it again a few months ago, never had any pains to mention, but now I can barely get up - I'm 44 and I feel like I am 194.....I too feel like its muscular, but then I dont know what arthritis feels like either :yfrown: ---thinking the only changes made is going back on Remi, now contemplating going off. I wish there was a magic answer. But my conclusion it is the med! Maybe a low dose of pred would help, I dunno!!
 
I started remicade for severe UC 7 months ago. For the past 2 months I have had such horrible joint and muscle pain that I can not even pick up my 9 month old son or get up and down the stairs! My gastro seems to have no answers for me! My gut is doing better but this pain is awful! Not really sure the remicade is worth this!
 
How are you all going re muscle/joint pain ? I too have it after my 9th infusion. . Its absolutely killing me its so painful. . Definitely the remi has done this.. I have cd.. never had pain ever prior to remi. . Have any of you got answers?? Thank you so much. . I have my infusions 8 weekly.. pain comes on 6 weeks post infusion. . Then pain just goes away as soon as I have infusion until 6 weeks.. I feel amazing for the first 6 weeks after infusion till pain comes.. then I can hardly move.. its dreadful. . Thanks x
 
Keenie, yours sounds a little different - it sounds like Remicade is helping your joint pain, because it goes away right after infusion. But then the onset happens as you withdraw from the most recent treatment. That's something to check with the doctor about.

For me, that was not the case, the pain eventually just got worse and worse without relief. I quit Remicade and have been off for almost a year now. I feel great. The joint pain gradually disappeared over about 6 months. The gut has been doing OK too. I don't know - I wish I never even tried the Remicade - I will definitely not go back on a drug like that. I'm holding out for stem cell treatment to become commonplace.
 
Hi Patrick no its definitely the remicade thats caused my joint pain as I Never ever had joint pain before I started on Remicade. . Ever.. im having infusions every 8 weeks. . Think I need them now every 6 weeks. . As my body is building up antibodies to the remicade. . Just had a chat to another lady in this forum and the same happened to her. . Yes Patrick I can't wait till all the new stem cell treatments are here.. I think its amazing.. your own body healing your own body.. thats beautiful hey.. take care and hope you're feeling well x
 
For the record, I'm now into my 11th year of Remicade. I always get joint pain the week after treatment. It's minor -- Tylenol and heating pads help -- and it goes away. I also get arthritis at random times and in random joints as the Remicade wears off.

It is weird that Remicade seems to both cause and help joint pain!
 
I also thought Remicade was causing my joint and muscle pain, but turns out I was having symptoms of Crohn's. My Dr. suggested increasing my Remicade treatments from 8 weeks to 7 weeks and that solved the problem. I think we forget all the side effects of Crohn's, it's such weird disease and I don't know about you but I get so tired of trying to figure it out!!
 
Remicade is a highly sensitive drug and should be taken only after strict consideration.It can cause many side effects specially people of over 65+ age group.
 
The doctors have now ceased my Remicade as I developed antibodies. Drug induced lupus from it. I am now on Humira and have no problems. My joint pain has totally gone, thank goodness.
 
After my 8th infusion, that night I had really bad joint pain in my knees and ankles. The Dr. then put me on allergy pills/1 a day two days before, one at the time of infusion, and then the next two days I take one. Also take tylenol before infusion and one that evening.

Infusion#9 & 10 _ only had very mild pain in my legs, so it seemed like a good treatment.

I just had #11 last week and I had HORRIBLE joint pain that night that Tylenol extra strength did absolutely nothing for. I finally ended up taking two painkillers for the first time in about a year or so. I couldn't even sleep I had so much pain - and I always sleep like a baby after infusion.

I am not even sure who I report this too? Or just the nurse at me next infusion and hope for the best? I didn't have bloodwork drawn this time but I am due to get it with the next one.
 
Well, since I started Remicade this next infusion will be my 4th, I have blown 3 discs in my back and torn my rotator cuff. Is this caused by my increase in activity since I feel WONDERFUL or us it the Remicade? Docs are working overtime to find out. However, I can say with certainty, that Crohn's is worse than anything I have experienced so far.
 
Wish i could help u here...i had complete body paim before remicade. Ricade has helped ally other symptoms except for the body aches.

I suggest if it has gotten worse with remicade to let your GI know.ine is ALWAYS asking me about the body aches and if i have experienced fatigue.
 
For me the joint pains start weeks after the infusion. I have a couple weeks of really sore joints, then it stops. very strange.
 
I think that all of you people who are experiencing this joint pain like I did need to go and get your blood test done for drug induced lupus caused from remicade. That's what happened to me and why I had to cease my remicade infusions. I built up antibodies to it. Good luck hope your joint pains cease quickley for you all, it's horrific I know.
 
I started having this horrific joint pain in my hand knuckles, knees, and unbelievable muscle pain. I hurt so bad that morphine together with Percocet is the only way I get relief. I'm not going to take anymore REMICADE, or prior med-Humira. I've only felt this kind of pain when I've broken bones!!!! I'm over this!!!
 
Meljordan said:
I started having this horrific joint pain in my hand knuckles, knees, and unbelievable muscle pain. I hurt so bad that morphine together with Percocet is the only way I get relief. I'm not going to take anymore REMICADE, or prior med-Humira. I've only felt this kind of pain when I've broken bones!!!! I'm over this!!!
Click to expand...
Consult with your doctor before quitting medication.
 
I know this is an old post. I hope the pain has gone away for you.

The reason I'm posting is that I can relate to what you said about the pain being in the joints and muscles that got used more. That's exactly what I said to my doctors. It doesn't fit the norm. For me, the pain is in the shoulders, neck, and feet. This also doesn't fit the norm. And the pain can shift around, which again doesn't fit the norm.

I have ulcerative colitis. I started noticing muscle pain after being put on Remicade. It got so bad that I couldn't get out of bed on my own or change my clothes.

My ulcerative colitis got into remission, but my sed rate was very high, which suggested I had systemic inflammation, so I was sent to a Rheumatologist. I had to get a slew of tests done. My Rheumatologist concluded that my pain didn't match any of the usual Rheumatological conditions (such as lupus, arthritis, polymyalgia, gout). He basically said that I have systemic inflammation of the soft tissues and that it's probably related to my ulcerative colitis.

I then got inflammation in one of my eyes, which lasted for a couple of weeks, and, of most recent, a swollen lymph node.

I think the pain, systemic inflammation, swollen lymph node, and Remicade are all related.
 
Subduedjoy said:
I know this is an old post. I hope the pain has gone away for you.

The reason I'm posting is that I can relate to what you said about the pain being in the joints and muscles that got used more. That's exactly what I said to my doctors. It doesn't fit the norm. For me, the pain is in the shoulders, neck, and feet. This also doesn't fit the norm. And the pain can shift around, which again doesn't fit the norm.

I have ulcerative colitis. I started noticing muscle pain after being put on Remicade. It got so bad that I couldn't get out of bed on my own or change my clothes.

My ulcerative colitis got into remission, but my sed rate was very high, which suggested I had systemic inflammation, so I was sent to a Rheumatologist. I had to get a slew of tests done. My Rheumatologist concluded that my pain didn't match any of the usual Rheumatological conditions (such as lupus, arthritis, polymyalgia, gout). He basically said that I have systemic inflammation of the soft tissues and that it's probably related to my ulcerative colitis.

I then got inflammation in one of my eyes, which lasted for a couple of weeks, and, of most recent, a swollen lymph node.

I think the pain, systemic inflammation, swollen lymph node, and Remicade are all related.
Click to expand...

Ditto on this. My joints have been hurting more and more since I started Remicade.

I see it's an old post, but I will admit that I'm relieved that someone else has had this experience. I am so tired of being tired and sore and not knowing if I'm off my rocker or reacting to a med, or getting new symptoms, etc.

The biggest thing I've noticed is my feet. Especially in the mornings, sometimes I can barely walk. DH thinks it's plantar fasciitis like he has, but it comes and goes and I NEVER had pain like that before the remicade.

Anyway. I'm not looking for answers here, but I hope the previous posters have found relief, and thank you for sharing. I'm pretty sure I'm boring my friends and family with my health issues, so I'm trying to deal without being such a downer. I wish people would stop asking how I'm doing, though. Is there a correct answer for that?
 
aypues said:
Paddywack - have your antibody levels been checked? That is oftentimes the culprit.
Click to expand...

I have labs done at every infusion. Is that part of the CBC? My numbers are all within normal, except that my hemoglobin has been under 11.0 for about 6 months.

I got a message that the doc wants me to have ferritin and an iron study done, and maybe an iron infusion.

I'm seeing my PCP tomorrow. I'll talk with her to see if there are any other tests she can run while they're already taking blood.
 
paddywack said:
I have labs done at every infusion. Is that part of the CBC? My numbers are all within normal, except that my hemoglobin has been under 11.0 for about 6 months.

I got a message that the doc wants me to have ferritin and an iron study done, and maybe an iron infusion.

I'm seeing my PCP tomorrow. I'll talk with her to see if there are any other tests she can run while they're already taking blood.
Click to expand...

no, it's not part of the CBC. it's a specialized test from Prometheus lab. It's called Anser IFX.
 
aypues said:
no, it's not part of the CBC. it's a specialized test from Prometheus lab. It's called Anser IFX.
Click to expand...

My doc ran some other tests and referred me to rheumatology.

Sorry for asking a dumb question: do doctors run the Anser IFX, or is it something I'd have to run down on my own.
 
I was only able to get the antibody test done after other things were ruled out. My GI had to follow certain procedures. There are certain tests he couldn't order until other things were ruled out. You should talk to your GI about the test.
 
Again I know this is an old post but it really helped me.

I was on Infliximab for 19 months. After a year at 6 weeks post infusion I started experiencing overwhelming and moving muscle and joint pain, I couldn't walk upstairs for example. My gastro team weren't listening or helping me.

I was taken off it in May '20 due to antibodies but then that was when the real overwhelming pain hit. I could hardly function and it was really hard to get anyone to listen, nothing had ever hurt so much before!

I have eventually been diagnosed with Drug Induced Lupus (Infliximab/ Remicide apparently can cause it) and after I was given steroids I feel much improved. I am currently not on any medication and am well.

I am reluctant to take anything else, I can't describe how painful this was or how much it affected me. Unfortunately I had a reaction to Azathioprine (not like this) years ago so don't know what to do next!
 
PatrickL said:
Keenie, yours sounds a little different - it sounds like Remicade is helping your joint pain, because it goes away right after infusion. But then the onset happens as you withdraw from the most recent treatment. That's something to check with the doctor about.

For me, that was not the case, the pain eventually just got worse and worse without relief. I quit Remicade and have been off for almost a year now. I feel great. The joint pain gradually disappeared over about 6 months. The gut has been doing OK too. I don't know - I wish I never even tried the Remicade - I will definitely not go back on a drug like that. I'm holding out for stem cell treatment to become commonplace.
Click to expand...
What treatment or medicine do you use now?
 
Hi, anyone got any opinion on Humira, Entyvio or Tofacitinib. I need to make a decision on which to go on but I am so worried about Lupus happening again. Don't want to do, currently only on 5SA and struggling. . Thank you.
 
PatrickL said:
I have a question for those of you that have started Remicade recently enough to remember what side effects you noticed. I started Remicade just under a year ago and have noticed a gradual onset of increased pain in joints and muscles, primarily those that get more use - shoulders and knees, and thigh pain that seems to be muscular in nature.

Have any of you experienced this? I've done some research into joint pain caused BY Remicade, most results are anecdotal personal stories of people that had not really experienced arthritic manifestation of Crohn's, but started Remicade and got new pain.

I thought Remicade was supposed to help not only with the Crohn's but also with arthritic pain. Now I'm wondering if it was Humira that was supposed to be better for the joint issues. My personal opinion is - what's the point of being on a powerful drug like Remicade if it causes symptoms that most Crohn's patients turn to drugs to alleviate? I could deal with a flare or two per year if it means keeping my immune system (and my bank account) in good standing. I'm afraid I won't get a straight answer from the GI, who I respect a lot, but I understand their job is to treat, not experiment based on my hunch that Remicade is causing my issues.

APologize for the long post, any insight would be appreciated.
Click to expand...
I started Remicade in October after several months leading up to a diagnosis of Crohn's after I was hospitalized. I had the initial loading doses and have had my first 8 week infusion. The first loading doses went well although I did notice some muscle aches and pains here and there. My Crohn's is in remission. This last two weeks I started developing migrating arthritic pains in my joints that have become more and more severe. Nothing works to ease the pain except my husband had some pain killers that have helped me to sleep. My GI said I need to come off Remicade and just sent me prednisone prescription to help with the joint pain. He is recommending trying Entyvio. My pain is unbearable, every time I move and it effects different joints, today it's my shoulder, wrists and hip. Yesterday it was my ankles, knees and one elbow. This sounds so similar to what you are describing!!!
 

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