Muscle/Joint pain from Remicade

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me_too
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/27/2010 9:58 AM (GMT -7)   
I was wondering if anyone had severe muscle/joint pain after a Remicade infusion? I had no reaction whatsoever after my first, but I felt like I had been run over by a truck after my second. My doctor did panels of blood tests and everything came back ok.

I was really nervous about my third, but except for being a little tired and achy the next day I was fine. I don't want to stop the treatments because they seem to be doing their job. I was just wondering if anyone had had a similar experience.

mmckenna
Veteran Member


Date Joined Jan 2006
Total Posts : 725
   Posted 5/27/2010 10:25 AM (GMT -7)   
I was on Remicade from 2002 until just recently. I never had any acute pain that I could connect to Remicade, but I did have a fair amount of general aches and pains in my joints and muscles. I know that some people do have a more pronounced reaction like yours, so it could certainly be tied to the Remi.

I've got to laugh a bit, feeling like I'd been run over by a truck is one of the things I remember saying to the doctor at least once or twice, so maybe I did have a few reactions like yours. Funny since Remicade is used for Rheumatoid Arthritis also, you'd think it wouldn't cause arthritis type symptoms?
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 5/27/2010 4:52 PM (GMT -7)   
There were times that the day after an infusion I would be very fatigued and have a over-all achy feel - sort of like I had the flu. This did not happen after every infusion but happened 2-3 times a year. I took Remicade for 2 1/2 years.
Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/27/2010 5:40 PM (GMT -7)   
Did your doctor actually order an ANA test?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


sickofitall
Regular Member


Date Joined May 2009
Total Posts : 250
   Posted 5/27/2010 9:15 PM (GMT -7)   
I've been having severe leg pain since starting Remicade almost a year ago. I've been to many specialists and they can't figure it out. I've decided that with my next round of drs visits coming up soon that if they can't find anything else wrong, I will switch to Humira. It has worked very well for me so I'm hesitant to give it up. But being in pain this much just gets old. :(
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
28 yr old female w/ crohn's colitis
 
 


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 5/27/2010 11:40 PM (GMT -7)   
Are you having any premedications? Every month when I have my remicade I usually am pretty sick the next day and have the aches. Joint pain is unfortunately a common problem of our disease and the remicade will actually help with that. Sickofitall, I was having the same problem with the leg pain and even weakness and have found that add cortisteroids to my usual premeds of Tylenol and Benedryl has dramatically helped. Your doctor may even consider adding 6-mp or methotrexate with your remicade to help it work better and avoid developing too many antibodies. I did the best when I was on methotrexate and remicade but it threw my liver levels way too high.

leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 5/28/2010 7:04 AM (GMT -7)   
Yes. I had my first infusion on Monday, and I've been having all sorts of random aches and pains since. Last night I actually couldn't barely sleep because my legs hurt SO bad. I finally had to get up and take some Tylenol to get to sleep.
30/f
chronic active colitis/possible Crohn's - unspecified IBD - waiting on a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Darvocet or Lortab as needed for pain


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/28/2010 7:19 AM (GMT -7)   
When you get to the point that you are in so much pain you cannot sleep and you do not want to move at all, then you might want to seriously think about getting tested for the lupus like syndrome, that can happen with Anti-TNF.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 5/28/2010 8:57 AM (GMT -7)   
Mmmnavy, I'm actually having the blood drawn for that in about a week - it's better today, I've just had these random patches of horrible achiness and pain that are driving me nuts.

Thank you though, I'll definitely get it checked out. :)
30/f
chronic active colitis/possible Crohn's - unspecified IBD - waiting on a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Darvocet or Lortab as needed for pain


CrohnsBones
New Member


Date Joined Nov 2012
Total Posts : 1
   Posted 11/16/2012 12:02 AM (GMT -7)   
I've been on Remicade for about a year and a half and as far as my GI problems are concerned, it's changed my life. I've been able to eat food like a normal person and not have to constantly worry about pain, diarrhea, extreme gas and my incredibly embarrassing loud GI system! However in the past few months I've had reactions to the Remicade and almost constant joint pain. The day after my treatment I wake up barely able to move my fingers. They hurt and are stiff and look like sausages. The next day it moves to my legs and my entire lower body feels like I've been thrown down the stairs or hit by a truck, I can't sleep without Vicodin. After that the pain moves to my wrists, alternating from one to the other. Long story short, my GI doc says it sounds like I'm developing anti-bodies but what exactly does that mean? After reading other people's experiences I'm getting scared that my reactions are going to get worse with each treatment. My guts have felt so good for the past year and the joint pain is becoming constant and gets worse after the Remicade so is it even worth staying on it? I got tested for RA and came out negative, my last colonoscopy was beautiful. Not sure if I should stick with it since it's the only thing that's worked, or if it's just making things worse in a different way...

31 year old female
diagnosed with Crohns in 2005, sick for about 5 years before that
tried Pentasa, Entocort, 6MP, Prednisone, Flagyl
currently Asacol & Remicade

Question Everything
Regular Member


Date Joined Aug 2012
Total Posts : 444
   Posted 11/16/2012 7:13 AM (GMT -7)   
Did you get the license number of that truck?
Knees and shoulder joint pain. Memory scrambled Slight loss of feeling below knees. When I did strenuous work, red patches would appear and then bleed, Ruined a few sleeved garments. Off Remicade now trying Cimzia. Have not had Remicade since August. All the symptoms noted are gone memory still off though. Was told can't take Remicade any more possible antibodies @ 14 months. Entocort was a pretty good in between filler, some relief. Don't get to nervous, You will really know when that is called for. Wishing you the best. Stress does not help.

Better Living through Chemistry
T

Walshy
New Member


Date Joined Apr 2014
Total Posts : 5
   Posted 1/30/2015 9:01 PM (GMT -7)   
I too have been having knee pain and SI joint or piriformis pain. Had a right hip replacement Nov. of 2013 and a bunionectomy, neuroma removal and bone spur all on my right foot. I have had Crohn's Disease for over 40 years and finally went on Remecade almost 2 years ago. It has been wonderful on my gut, but fear that the knee, excess foot pain and sciatica type pain may be caused from the drug. Anyone else have excess pain after surgeries

Walshy
New Member


Date Joined Apr 2014
Total Posts : 5
   Posted 1/30/2015 9:06 PM (GMT -7)   
Aldo, forgot to mention that I have been to the ankle and foot surgeon and an orthopedic surgeon to discuss this other pain and they can't figure it out either

UCFKnight
New Member


Date Joined Feb 2015
Total Posts : 5
   Posted 2/3/2015 5:50 PM (GMT -7)   
I've been on Remicade for 7 years.

I always been dizzy & tired after it for about one to three days.

Remicade has been a miracle for me. It's helped me for years.

I did not feel pain in my joints when I first started it.

Last year, however, I did experience pain in my wrists and joints. I'm not sure if that was from Remicade or Crohn's Disease because CD has been known to cause pain in your joints. The pain randomly went away after a month though and hasn't come back.

Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 2/3/2015 7:03 PM (GMT -7)   
I had to stop Remicade because it gave me a major reaction. I am like what CrohnsBones has and it's scary. It was for me. I continued to be on it for a few months after I began to have swelling in h hands, wrists, knees, hips, feet, everything, I could barely walk the bones and joints in my feet were so swollen. I could not even wear shoes. It was so awful. I had swollen thumbs, fingers, and hands. I was just a big puffy marshmallow. If I did so much as sit down wrong or open a door too hard my hands would swell. I switched to Humira after many dead end rheumatologist appointments and I'm glad I made the switch. If you are losing sleep or losing function in your activities of daily living it is time to make a change. I was so scared because Remicade changed my life and helped me make it through my wedding day and I was scared of going back into a flare. Well, the pain of the Remicade was worse than the worry of going off of it and the unknown of trying something else.

If you suspect something is seriously wrong you are probably right. Listen to your body.
{Laura} 27 years old
--Diagnosed with moderate/severe left sided UC June 2007, I've had it since December 2006; as of ER trip in May 2011, I have Crohn's for sure. What a ride!!
--Imuran 100mg/day; Remicade gave me bad effects; As of 9/27/13, doing Humira.

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 2/6/2015 7:55 AM (GMT -7)   
I had severe joint pain and stiffness following remicade treatments. I was fine after the first couple. Then I think the third time I started feeling mild joint pain. Each infusion got worse. I think I had 2 maybe? (Sorry this was about 7 years ago) after the initial joint pain started, mostly because we weren't sure what was causing it. The last infusion i got made it very clear it was from the remicade. I got so stiff I couldn't sit or stand without help. I couldn't get out of bed, open a door, or even lift my arms to wash my hair. I felt like I was made of stone. If it gets worse after your next infusion I would definitely speak with your doctor. Good luck!
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