Sore stiff muscles.

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Lydia

Joined
Mar 19, 2010
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I get these bouts of muscle stiffness. I wake up in the morning feeling like I fell down a flight of stairs. Every muscle group is stiff. Arms, legs, chest, shoulders, back, neck, everything. Its stiff but not achy like when you have the flu. If I move around a bit it gradually gets better to the point of being gone, but when I stop moving the stiffness returns.

I am beginning to wonder if its a remicade side effect, as I have never had this happen in my entire life.
 
I have been experiencing sore muscles and joints right from the get go, starting Remicade. I did have some minor joint pain before. The last infusion they missed the liquid steroid, I can never remember the name. Since then it has been getting more and more painful. I see my GI on Tuesday, so if she has any ideas on what is happening with me, I can pass it on. Maybe it will help you. The difference between what I am going through and your descriptions is that in me, it moves all around. One day it will be the shoulder, then the knee, then the fingers and so on. It can also be good in the morning and by evening ache, ache, ache. Anyway, I will pass on what I find out.
 
Now my wrists hurt. The joint and not the muscle. Although my muscles hurt too, still. I used to only get the joint pain just after remicade, but I had remicade a few weeks ago so even that it changing.

We had a good run, but I think I am going to start taking aza, and come off the remicade a few months after I start the aza.
 
Imuran worked for me long ago. I took it for a year and it kicked off a really long remission. I took it for a little while when I started remicade but I wasnt comfortable taking both long term.
 
My wrists hurt so bad last night I could not lift my child in and out of the tub, or to the sink to wash her hands. She is barely 25 lbs. I also could not turn the bath faucet on with my right hand. I think I am done with remicade. I just know its the remicade.

I am very concerned over this muscle and joint pain. I am too active of a person to put up with this.
 
Oh dear, that is not good!! My heart goes out to you!! I just spent most of the weekend at ER or getting rid of the pain. It decided to attacked my right chest. They did all the tests and found my gall bladder a little out of whack. That doesn't explain the rest of the painful joints and muscles. They couldn't address that at all. Right now I am high on Tramadol, and I don't even care. I am very interested in what my GI says and her nurse have to say. They both had a really hard sell, with me to try the Remicade. If they poo, poo the joint pain issue I think I may have to get angry. Spout quality of life, what good is it if you can't move. I can't imagine not being able to pick my child out of the bathtub!! We'll see if I believe what they say. I will pass on what they told me, we are very similar in descriptions.
Regards Pam
 
I take Remicade, but I've never had joint pain as a side effect. I get chest pain that will radiate to the arm I received my infusion. It's completely gone in 3-4 days.

Not to freak anyone out, but joint pain and stiffness can be a sign of Crohn's. Genetically, Crohn's and Rheumatoid Arthritis are cousins, so if you suffer from either disease you can have symptoms of the other. I actually started Remicade because my joint stiffness/pain was out of control. Sometime when Remicade gets one group of symptoms under control, Crohn's will change it up and attack from another angle.

FYI-A joint flare consists of extreme tiredness, pain, stiffnes in major joint/muscle groups, extending to hands/feet on occasion. Also swollen joints, redness, hot to the touch, low grade fever. Mine starts this way, then after a few weeks it will go to the bowel.

I would recommend letting your GI know your symproms and see if you can be evaluated. It's better to know for sure whether it's the Remicade or a different type of flare.
 
I have have had the crohns flare in my joints before, and that felt more flu like to me. This is different. Its very acute. It moves around. It comes and goes. I had such a bad day yesterday and today I almost feel normal. Its so weird to me. I am going to see my GI in Sept and I will continue the remicade until I see him, but I think I am going to switch to imuran.

Its too bad because it worked so well for quite awhile with no side effects.
 
Not to worry, you are not freaking me out, Jeanette. That is what has me so buffaloed, the pain was never this bad before I started Remicade. I didn't start on it until a year and a half after surgery, just stubborn.
 
My visit with my GI gave me this information.
Questions she asked. Summary only.
Have you ever been treated or taken medication for stomach ulcer or arthritis? NO
Any one in your family history had rheumatoid arthritis? NO
When did the pain start, was it right after the infusion? NO
How long does it last. It moves from joint to joint on going. No difference between just after and later. It hits when it hits.
Do you see any swelling of the joints in pain? No other than my thumb.

She suspects that is it a reaction to the Remicade. To make sure I am to give a blood test two days after the next infusion to make sure.

My advice, see your doctor and tell them your symptoms.

What can happen in rare occasions is what is called Arthralgia, the pain is there, but it doesn't show the swelling that arthritis does. There is a blood test to catch this.
Hope this helps.

So go get it checked out. You may be reacting, we shouldn't have to live with the pain.
 
I am sorry to hear Remicade is starting to fail you. Like you said, with these side effects and the miscarriages, perhaps it is time to move on. I hope imuran works well for you again.

Question, you said you took Imuran for a year which helped you acheive a long remission. Did it stop working or did you stop treatment because you were doing so well?
 
xJillx said:
I am sorry to hear Remicade is starting to fail you. Like you said, with these side effects and the miscarriages, perhaps it is time to move on. I hope imuran works well for you again.

Question, you said you took Imuran for a year which helped you acheive a long remission. Did it stop working or did you stop treatment because you were doing so well?
Click to expand...

I stopped taking it after about a year. I kept getting infections like UTIs, and I was tired of taking antibiotics. So I stopped taking it after a year, but I stayed in remission for 3 more years after that.

This time my flare was so bad that we didnt have time to wait for imuran to kick in, but now that I am in ok shape regarding crohns, I think I have the time. I see the doc on Aug 18th. I have pretty much made up my mind in stopping the remicade.

I hate to complain, but I am so tired because the soreness affects my sleep. I wake up everytime I move in my sleep so its all broken up.
 
I'm right there with you Lydia, the pain every time you roll over, so much so that it wakes you up is almost unbearable. I'd take the Imuran. Remicade is not a cure, just maintenance.
 
Talk with your Dr. asap. There is a Lupus like syndrome that remicade and Humira both can cause. It usually will disappear after the stop of the drug. BUT i ended up getting the really forever lupus. So i will have it until a cure can be found for both Crohn's and lupus.. (along with a perm Ileosotomy) Lucky me...
 
I think you should talk to your Dr soon as you can. I was on Remicade and developed drug induced lupus from it. I started getting a random pain in my wrist sometimes it would just be there one day gone the next with weeks in between. Then one day my wrist was sore then my ankle and knee, then both knee's. Each day it seemed somewhere else was effected, fingers, feet,shoulders, elbows, jaw.....pretty much every joints except my hips for some reason. The pain could be in one place one day then gone the next. I struggled to sleep some nights because of the pain. The pain seemed to ease slightly in the middle of the day for about an hour then I would start to seize up again. It drove me crazy. My finger joints would swell up too.
Once they figured out that it was drug induced lupus from the remicade they stoped it immediately and things returned to normal.
Unfortunately I was told I was not allowed to have any drugs from the same family of meds as remicade.

I hope you are able to find out soon whats going on with you and get some relief.

M
 
Thats where I am at right now. All these symptoms must add up to something. They all happen at different times. I really do wonder about the lupus thing.

-abdominal pain (Not related to crohns)
-Blotchy rash on neck. It comes and goes.
-Sore muscles
-joint pain
-Sore throat. It comes and goes and feels like there is a thumb tack that is stuck
-fatigue and brain fog, although this can be from ****** sleep
-I have had 5 early miscarriages on remicade. All the testing for this has come back normal.

At first I thought they were their own individual problems because they all happen at different times and some started way before other. The rash and abdominal pain was happening for months before the other stuff started happening. I am starting to think its all cause by the remicade. I can not wait to see my GI.
 
Man it sounds like you've been going through a lot.
Keep us posted on how things go for you.....do you have an appointment with your G.I?

M
 
Its been about 5 weeks since my last infusion and I am flaring pretty darn bad. Bad enough to pop 30 mg of pred last night and another 30 today. Boo.

I have to say that since I took the pred I feel better. Like the other symptoms too. My joints and muscles dont hurt at all, and I slept wonderfully last night.
 
UPDATE: My doctor called me. He is taking me off remicade. He says its really likely my body is reacting to the remicade and I cant take it anymore.

The new plan imuran and predisone until the imuran kicks it. I got a prescription for ativan for the prednisone jitters too since I will be on pred for about 3 months.
 
Thanks for the update. It sounds like you have a good plan going. I hope the pred continues to help, and the Imuran kicks in soon!
 
I get very sore legs. In the muscles and/or bones. I don't have any idea why but it has happened with all three of my first infusions. It usually goes away in 3-4 days aswell. Maybe it just affects everyone differently????
 
I just signed up here b/c I'm trying to get more info over this weekend to decide whether to cancel my next Remi infusion.

Like a lot of you, I have been experiencing joint/muscle pain. It usually starts about 2-3 weeks prior to my next scheduled infusion. It happened back in the Fall of '08 (I've been taking Remi every 8 weeks since Oct of 2007). At that time it went on until sometime in Spring of 2009 then things got better. But this summer has been nightmare. In May, I went to the ER b/c I couldn't lift my left arm. The Er doc suggested I stop taking Remi, but my GI convinced me to stick with it.

The day after my ER visit, I went in for my scheduled infusion, and on that morning, my left arm was a little better but I couldn't lift my right arm!
Before my July infusion, I was getting pain in my knees, ankles and even in my groin so bad I missed some time at work.

The joint pain goes away a day or two after the infusions.

My doc recently suggested upping the dose. I'm afraid to do this b/c, if the Remi is no longer helping me and may be the cause of the pain, I certainly don't want more of it! He, and other docs, have told me about arthralgia related to Crohns. But I never had it before Remi, and I've been told arthralgia is achy, arthritis-like symptoms - not full blown crippling pain.

Anyway, I'm giving myself this weekend to gather as much info as I can and make a decision by Monday (next infusion is 9/14).
 
I want to update that since stopping remicade all the weird random things that were happening have stopped. No more mysterious abdominal pain, no more sore joints or muscles, that feeling in my esophagus is gone, and I dont get the itchy rash on my neck anymore. I am well enough to go on a 40 min hike every day, and do 30 min of hard circuit training. My body feels great.

Now if I can just get pregnant, that would be icing on the cake.
 
There we go, that is exactly what my throat feels like along with the rest of it. Thanks a bunch!
 
Lydia said:
I want to update that since stopping remicade all the weird random things that were happening have stopped. No more mysterious abdominal pain, no more sore joints or muscles, that feeling in my esophagus is gone, and I dont get the itchy rash on my neck anymore. I am well enough to go on a 40 min hike every day, and do 30 min of hard circuit training. My body feels great.

Now if I can just get pregnant, that would be icing on the cake.
Click to expand...
Lydia - just wondering, how long were you on Remicade? Also, how long was it between stopping it and the cessation of muscle/joint pain?

I went to a rheumatologist before my December infusion, and he took blood and gave me a solu-medrol pack. The pack helped with the pain, but obviously I don't want to take a bunch of prednisone (fortunately never treated my Crohns with it). Anyway, I got the results during my follow-up on Monday, and I am now testing positive on the ANA test, which can be indicative of SLE (or other inflammation). I asked the doctor if there was a test to determine if the pain is related to Crohns, or a new autoimmune problem, or drug-induced Lupus. He said "well, you don't take any medicine that can cause drug induced Lupus." I couldn't believe my ears! It says right on the Remicade page on the Centacor website that it can cause DILE. I guess I should look for a new rheumy, because this one doesn't seem to know his meds.

In the meantime, I have another infusion due on Tuesday, and I am suffering more muscle/joint pain and fatigue. Thinking of calling my gastro and telling him I need to take a break from the Remicade. I'll miss it, because it really helped for a long time. :-(
 
I have been having issues as well, tennis elbow, now my neck has lost some range of motion and is painful, I cannot handle some of the meds that require self injection because of an allergy to latex. I have felt better in a lot of ways since remicade, but I can't deal with this added joint pain. To begin with, my arthritis improved on the remicade, and my overall range of motion improved, then came the weird muscle/joint issues. I'm due for an infusion today, but I cancelled secondary to not feeling well, I almost am wondering if I should just wait it out and see what happens before re-scheduling. Lydia, thats great for you. I also get strictures in my esophagus that feels like that and I have to have them widened with an endoscopy, was getting them frequently but doing okay with that issue presently. Medicine sure is complicated, eh?
 

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