Side effects from Remicade or is it just me?

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Regular Member

Date Joined May 2009
Total Posts : 250
   Posted 5/22/2010 2:44 PM (GMT -6)   
Hi guys hope all of u have been doing okay.  I haven't really posted much bc my main symptoms right now have nothing to do with my digestive tract.  My stomach has been doing great on Remicade.  The rest of my body is not.  In fact i walk like a 90 yr old woman at 29.  I know something is not right.  I keep going to different drs for them to tell me its just inflammation in my joints from crohns and okay i may have accepted that for a while but nothing is helping.  I have severe leg pain, on pain meds all the time now, otherwise I will just scream and cry.  I've gotten cortisone injections in my hips, no help.  I can't do grocery shopping anymore.  That would put me down for a week, or house cleaning for that matter.  I have tingling in both legs, sharp shooting pains, sore muscles, joint pains you name it.  Recently I developed a chest pain and a lump in the center of my chest and shortness of breath and now even face pain.  I don't know whats going on.... My stomach is really the only thing that feels good.  I'm on Neurontin (for leg pain), Remicade (for crohns), and pain meds.  I developed steroid withdrawal (sever joint pain) before starting remicade.   So I think thats why my drs dont think its the remicade.  But as more things develop its starting to really scare me.  I've tried all maintenace meds for crohns with no luck so theyre reluctant to pull me off the remicade and frankly so am I.  I would appreciate any guidance.  I'm going to see a new rheumy and neurologist in a week.    
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
28 yr old female w/ crohn's colitis

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 5/22/2010 5:08 PM (GMT -6)   
Hey. Glad to hear you'll be seeing a rheumatologist soon. I was going to recommend seeing one right away.

I think with remicade, you should rule out drug induced lupus. The tests for this are ANA (for lupus), anti-ds-dna (for drug induced lupus). Also, I think you should try to rule out RA. So, you should probably get the anti-ccp and the RF factor test. Also, they should probably do the crp and esr tests just to see if your inflammation markers are up.

If it comes back positive for lupus, they'll probably have you stop the remicade right away. Also, maybe Remicade itself is insufficient to control all the symptoms. If all the tests come back normal, and you still have uncontrolled inflammation, I think you should start co-therapy with another med like methotrexate.

My husband's rheumatologist says that MTX works great for inflammatory arthritis of any sort, including RA. So, if you are clear of lupus, this could be the next logical step to get the inflammation under control (if this is inflammation and not nerve related).

I'm glad you're also seeing the neurologist. They'll probably do a nerve conduction study and maybe an MRI to see if the remicade is affecting your central or peripheral nervous systems, which hopefully it isn't.

This could be a case of needing additional medication to bring the inflammation under control. Hang in there, and hopefully you'll have your answers next week.

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission

Regular Member

Date Joined May 2009
Total Posts : 250
   Posted 5/24/2010 9:16 AM (GMT -6)   
thanks PV.  Especially for the name of those tests.  I will bring the list to the Rheumy and Neurologist next week so they know I'm not playing around.  I did try 6MP a few months ago and developed fever blisters all over my lips along with thrush.  I'm still having a hard time getting rid of the thrush.  Gastro decided to take me off and see if remicade alone could control the inflammation.  They do know that the CRP levels continue to increase every time I gets tested so they were trying to do 6MP before it got out of hand.  I did have alot of these tests done when the pain initially started one year ago.  It will be interesting to see what the results are a year later.  I just really need answers.  I was perfectly fine before starting the prednisone, no body pain anywhere, ever.  So its just really frustrating to me, I feel like they're not listening.  I am very in tune to my body.  Every time I feel something is wrong, it usually is.  So wasting time not doing anything (as far as treatment goes) is annoying.  I'll let you guys know as soon as I find out.   Thanks.  Stef.
Current meds:  Remicade
Tried:  Prednisone, sulfasalzine, lialda, antibiotics, imuran
28 yr old female w/ crohn's colitis

Regular Member

Date Joined Feb 2004
Total Posts : 437
   Posted 5/24/2010 11:16 AM (GMT -6)   
I had the same reaction when I was on Remicade. I walked with a cane and I had to take those little scooters at the grocery store. Even my jaw hurt, every joint. It was really rough, but it was helping my CD and it put me into remission. I was even dx'ed with Fibromaylgia which i know now was just the Remicade talking.

I think it's good to get RA ruled out, but it's possible that it's the Remicade doing it. When they took me off Remi it took about 3 months and all the pain/symptoms went away. If they don't find anything at the Neuro I would suggest asking to go on Humira or Cimzia to take away the side effect. At some point you have to consider which is more important (at least I did) CD or walking without pain.
Good Luck!

Crohn's Disease Dx'ed in '02
Bipolar 1 Disorder w/Psychosis -Rapid Cycle

Abilify,Tofranil, Aciphex , Lisinopril, Allegra-D, Sustenex 1 per day

Crohn's drugs I've tried: Remicade (put me into remission), Entocort, Immuran, Prednisone & Questran powder.
Bowel Resection: 2002
Fistula surgery: 2003

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