Really bad joint pain since getting my last remicade

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bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 6/1/2008 4:18 PM (GMT -7)   
Hey all,
I was just wondering if I should be worried as I've been experiencing really bad joint pain since I had my remicade infusion 5 days ago.  My shoulder, hips, toes and even my jaw have been sore.  I could hardly sleep a few nights, and could barely walk when I first got up a couple of days ago. I have never had pain in my hips or jaw. Can this be a reaction to the remicade, or just coincidental?  Will it subside soon? If anyone else has experienced this, please let me know what happened.
 
Thanks for your help,
 
Bev

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/1/2008 4:23 PM (GMT -7)   
It could definitely be a reaction to the Remicade. And the bad news is that it *could* continue to worsen over the next few days. I think it's time to call or visit your doctor. Don't let the desk dragons put you off - tell them it's important and you need some medical advice fairly quickly.

I'm so sorry, Bev.

Ivy.
Co-Moderator Crohn's Forum.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 6/1/2008 4:42 PM (GMT -7)   
Hi,

Sorry that you are in so much pain. I had the same thing happen to me while on remicade. Turned out I had remicade induced lupus, and was put on prednisone and MTX. Thank goodness this helped. I found that the pain would jump from one spot to another, meaning today it was my right wrist and knees, but the next day it would be my left wrist and fingers. I just never knew where it was going to hit. My GI discontinued the remicade and sent me to a rheumy whom diagnosed the lupus (joints) with various blood tests (ANA, ENA, ect.) I know only to well the pain you are experiencing, and the sooner you see your GI and Rheumy the better. Please keep us posted as I will be thinking of you.

Take care,
Julia

Shellz0711
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/1/2008 5:12 PM (GMT -7)   
I am having the same issue! I just had and infusion on Thursday and have had incredibly bad joint pain since. Oxycodone doesn't even touch the pain. I called my clinic and they said to take bendryl and tylenol. Have you found anything to help with the pain? It is so bad I just lay on my couch :(

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 6/1/2008 5:49 PM (GMT -7)   
Wow, this is pretty scary. I didn't realize bad joint pain was such a common reaction to remicade.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 20mg prednisone.


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 6/2/2008 5:57 PM (GMT -7)   
I'm not quite as sore today - so I decided to see what tomorrow will bring - I've had so many problems with medications that I don't want to admit that remicade might not be the answer for me either. It's been doing such a great job controlling my crohn's, that I don't want to have to stop it. I'll definately talk to my doctor though. I don't want any long-term issues.

Julia, how long were you on remicade before you were diagnosed with remicade induced lupus? I had another autoimmune problem last year before I began the remicade, and they tested for lupus - which was negative. Can it come on after 7 infusions of remicade?

Thanks so much for your replies - they're greatly appreciated.

VegasTech
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/3/2008 12:38 AM (GMT -7)   
Hello --

I know that this may have been discussed at length, but I haven't found a post that "mirrors" what happened to me last week.

I was just starting the 8th infusion of Remicade - all the previous except the last one I had been given 50mg Benadryl IV as a premed. Never had any problems, except the previous infusion I had some minor joint aches that I dismissed because the doctor forgot to order the benadryl as a premed. Last week, though they gave me the Benadryl & a steroid as the premed.

about 10 minutes into the infusion, I was having trouble breathing & I called for the nurse. By the time she got to me, I was turning cherry red, no hives but really short of breath. She stopped the infusion, withdrew blood from the catheter site (to remove any medication) and gave me more Benadryl IV. It began to help but they still needed to give some Epi to counter the reaction. An hour an half later, I was weak, but able to function. The nurse said she has "seen this a lot where people do fine & then develop a reaction".

I didn't have the severe joint pain many have talked about and for days afterwards, the only thing was I was more fatigued than usual. I'm just wondering if this might have been a one-time reaction or forget Remicade? Your thoughts will help me decide when I talk to my GI later this week.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 6/3/2008 7:03 AM (GMT -7)   
Hi,

I was on remicade for 1 1/2 years (9 remicade treatments) when I developed the Lupus. Precisely 6 weeks after the last 2 treatments the joint pain started. It hurt to sit down, I couldn't pour water into the coffee maker because I couldn't lift my arm that high. I would get into the bath tub, and couldn't get out. I compare this pain to that of a periannal abscess. The only meds that helped were MTX and prednisone. Bentwistle Are you on MTX with the remicade? I can say that it has been 2 years and I am much better, so there is hope. I just started Humaria, and I was told by my GI that he has another patient that had the same symptoms as I did with the remicade. She was on Humaria for 9 weeks and develped the Lupus again. I am at 5 weeks, so far so good. I hope you find some relief soon.

Take care and let me know how you are doing.

Julia

trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 6/3/2008 7:55 AM (GMT -7)   
I would definitely speak to a doctor about your joint pain if I were you.  I started having mild joint pain after my 3rd Remicade infusion.  I actually mentioned it to my doctor who disreguarded it.  The pain kept getting worse, it seemed to get better after my next infusion, so I thought maybe it was crohn's related arthritis, and the Remicade was actually good for it.  Around 3 days after the infusion the pain came back.  Only this time it was TERRIBLE.  It kept getting worse each day.  I called my doctor, who was still disregarding it as crohn's arthritis and told me to go to a family doctor!  I kept calling, daily, saying this was not what I felt it was.  I actually had no family doctor.  At it's best I couldn't even reach my arms above my head because my shoulders were so sore and stiff.  It got to the point where just sitting was painful.  The slightest involuntary twitch triggered waves of pain.  I needed to take Maximum Strength Tylenol every 4 hours just to deal with it.  I couldn't get out of bed on my own, I couldn't wash or fix my own hair.  I couldn't turn doorknobs, because I couldn't grasp them.  I basically couldn't take care of myself.  I ended up doing my own research and put myself on prednisone, because I had read that was what other's doctors had done.  I worked, and I was feeling better within hours.  However it is 5 months later, and I'd be lying if I didn't say that I still think I'm having reminents of this problem.  I occasionally have mild joint pain in my hands, shoulders, knees, and ankles.  I NEVER had any joint pain before Remicade.  What I eventually was diagnosed with was a delayed reaction to Remicade.  This apparently can be tested with a blood test.  Not that my doctor did any of that.  She was worthless and I'm no longer seeing her.  I would hate to see that kind of pain happen to you or anyone. 
~Nikki


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 6/3/2008 8:56 AM (GMT -7)   
From personal experience, I'd say it's the Remicade. Ask your doc to do a blood test to check for antibodies. Mine didn't (said he didn't know it existed - I've changed GIs) But shortly after my last infusion the debilitating joint pain vanished and hasn't come back. The Fellow at my new GI's office was astounded the old doc didn't do blood test -- he said it was a no brainer!

I have however had some lasting issues, mainly loss of strength in my hands etc. But that could be me.
 


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 6/3/2008 1:29 PM (GMT -7)   
Thanks so much for all the great information - I will definitely ask about getting the blood test. I also noticed a little tightness in my chest for a few minutes when the infusion began, but it went away. I told the nurse, and she said it could be a problem, and I should make my doctor aware of that when I see him. I had some hoops to jump through to get remicade approved - and it's been so good for me...I don't want to admit it looks like it could be the beginning of the end of its use too. I'M SO FRUSTRATED THAT MY BODY FIGHTS OFF EVERYTHING! (except of course this DD). I've had so many bad drug responses - it makes me nervous that I'll end up with no alternatives (even prednisone has so many adverse side-effects I can barely tolerate it anymore).

Thanks for letting me vent!!

You're all great!!

Bev

Ltordo
Regular Member


Date Joined Feb 2007
Total Posts : 33
   Posted 6/3/2008 2:58 PM (GMT -7)   

I had severe joint pain after my 4th and 5th Remicade infusions.
My GI now has me take 20mg of Predisnone the day before, and
20mg the day of the infusion. Then a Medrol dosepak for 6 days following
the infusion. It works great, and I haven't had any joint pain since.

The Remicade works great for my Crohns, so I am so glad I did not have
to stop it.

Dx with Crohn's-Colitis January 2007
Meds: Remicade, Aciphex


Jason D in MN
Regular Member


Date Joined Jun 2008
Total Posts : 54
   Posted 6/3/2008 3:41 PM (GMT -7)   
I had 1 infusion years ago, just after Remicade came on the market and just before it was understood people may build antibodies if they've been off for a few years. So Remicade hasn't been tried on me since. (Mostly my decision based on how I felt like crud for a year afterward... basically as if I had just gotten over or still had a flu bug... )

In any case ALWAYS CONTACT YOUR G.I. ASAP if you suspect you're having a reaction to Remicade! Biologics -- Remicade is one -- can provoke a bad immune response in some people. Not keeping your GI doctor in the loop is like playing Russian Roulette. If it turns out it's not Remicade causing the problems, GREAT. However if it is, they need to know to help figure out if you need some sort of pretreatment before recieving the infusion, or if they have a possible emergency on their hands.
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