Severe Joint Pains

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nursetiff
Regular Member


Date Joined Jul 2007
Total Posts : 33
   Posted 5/7/2008 8:45 AM (GMT -7)   
Is anyone else suffering with joint pain associated with Crohn's??? Mine has been getting progressively worse and I am not having a flare. I am coming down off my remicade and am due in 1 1/2 weeks, but I never had this before January. The only thing that touches it is 2 percocets. I am seeing my Dr. Friday and probably need to see a Rheumatologist. Has anyone found anything that works??? I had to call into work because I could barely walk. It is in my ankles, knees, hips, elbows, shoulders, wrists, some fingers, and sometimes my neck and it migrates around. Thanks, Tiff
diagnosed with Crohn's 2/2007. Small bowel resection 4/2007 d/t abcess, perforation.
Currently on Remicade, Pentasa 1000mg 3xday.


BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 5/7/2008 8:54 AM (GMT -7)   
My wife had terrible joint pain and it was from the Remicade.  They sent her to the Rhemuatologist, tested her for a few other things including Lupus.
 
For her, it seemed to be mostly in her hands and elbows, but moved around different places like her neck and ankles.  There was also swelling and red irritation in her joints.
 
It seemed to go away when she got her Remicade treatment, but turns out that it wasn't the Remicade helping her, it was the small dose of Preds they were giving her before her treatment.
 
The good news was it was all reversible once she was taken off Remicade.  After several weeks, she was fine.
 
They moved her to Humira and everything is back to normal.  Her crohn's never flared during this period.

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 5/7/2008 9:04 AM (GMT -7)   
Sorry you are suffering with such bad joint pain. When I was on remicade for 1 1/2 years I developed remicade induced lupus which affected my joints. It began to strike precisely 6 weeks after my last 2 remicade treatments. It hurt to walk, sit down, pour water in coffee maker, etc.. The rheumatologist did ANA, DNA, etc. tests which came back positive for the lupus. I think it is important you see the rheumy, as your symptoms sound all to familiar to me. For my treatment I was taking pred and methotrexate. Relief was found within a week. I wish you the best and hope you get a diagnosis asap. Take care, and keep us posted.

Julia

BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 5/7/2008 9:10 AM (GMT -7)   
Don't be alarmed with Lupus.  It's not really Lupus, just Lupus-Like symptoms.  And when you get off Remicade, it goes away.  It takes a few months to go entirely away, but it will eventually.

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/7/2008 9:17 AM (GMT -7)   

Nursetiff, I started having joint pains while on Remicade, but was told it was not Remicade induced lupus but rather "Crohn's related arthritis."  Mine did not go away after stopping Remicade treatments.  From what I read online, it's called peripheral arthritis, as it's in my major joints and migrates.  I was on crutches for about a month when it first happened. 

Ultracet and arthritis meds (in addition to the Cimzia treatments I take) are what my rhemy prescribed but I ended up with 3 ulcers from the meds and still not as much relief as I would have hoped for.  Salsalate and Celebrex did nothing but the ultracet helps some.  I went through some horrible weeks during the winter, but started feeling much better once it warmed up.  Until the last week and a half.  Not sure if it is all the rain here right now or if maybe I'm losing response to the Cimzia (although the Crohn's is still being helped a great deal by the Cimzia). 

So, I either get to try different arthritis meds (next option is Sulfasalazine) which will get me kicked out of the clinical trial I'm in and will possibly cause more ulcers or I get to try to wait it out a little longer and see if it's just from the rain.  So, I feel your pain!  I see my GI next week and will see what he says...hope he doesn't make me wait until my next rhemy appointment in July.  I hope you find something that helps.         


...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 5/7/2008 9:28 AM (GMT -7)   
ZenaWP -
 
How long ago did your stop Remicade treatments? 
 
When my wife went through this, we thought it was the same thing.  To me, it was ironic that this pain started while she was on Remicade.  She never had joint problems for the 19 years she had crohn's.
 
My wife's doctors told us that it could take several months for her body to come back to "normal" from the joint pain.  Lucky for her, it was only 2-3 months before it was completely gone.  I read online that some took up to a year to feel better in their joints.
 
Sorry to hear you have Peripheral arthritis.

Post Edited (BillyLitt) : 5/7/2008 10:31:10 AM (GMT-6)


nursetiff
Regular Member


Date Joined Jul 2007
Total Posts : 33
   Posted 5/7/2008 10:06 AM (GMT -7)   
I am going to talk to my Dr. about all of this, thanks for the good info. I was wanting to stop the Remicade anyway, because I'm sick of all the infections. You all are such a big help, thanks a bunch, Tiff
diagnosed with Crohn's 2/2007. Small bowel resection 4/2007 d/t abcess, perforation.
Currently on Remicade, Pentasa 1000mg 3xday.


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 5/7/2008 10:28 AM (GMT -7)   
BillyLitt, my last Remicade treatment was in December 2006.  So, a year and a half.  My rheumy supposedly did a test when it first happened, but said it was negative for medication induced lupus.  It never got any better after stopping Remicade and gets noticably worse with changes in temperature, rain, etc.  I'm glad your wife got rid of hers in only a couple of months.  I'm still suspicious of the Remicade, but guess I need to believe the doctors and the data that says the pain would have gone away if that's what had caused it.  Regardless of what caused it, I just want to find something that helps more!  =)   

...rejoice in our sufferings, because we know that suffering produces perseverence; perseverence, character; and character, hope.   Romans 5:3-4


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/7/2008 7:31 PM (GMT -7)   
Same deal here...see the Rheumy May 21st. I had 4-5 infusions of Remicade since my dx before building antibodies to it. Now I'm on Humira and the joint pain has STILL gotten progressively worse. I just wish I had some answers!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/7/2008 7:41 PM (GMT -7)   
Yeah, I did Remicade over three years, now on Humira, joint pain is worse. I wake my hubby up and eventually hit the couch so he can sleep.

nursetiff
Regular Member


Date Joined Jul 2007
Total Posts : 33
   Posted 5/10/2008 11:52 PM (GMT -7)   
So...I saw my primary on Friday and he put me on a prednisone "burst" 40mg twice a day....trust me, after the moon face and jitters last time I'm not doing this for long, celebrex, zantac, and still on percocet for pain sometimes. But I really do feel better now! I still have to see a Rheumie, but for now at least I have some relief. I hate prednisone...it is the devil! We'll see what my labwork shows monday...Happy Mother's Day all

diagnosed with Crohn's 2/2007. Small bowel resection 4/2007 d/t abcess, perforation.
Currently on Remicade, Pentasa 1000mg 3xday.

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