Q for the joint pain vets

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inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 6/4/2009 6:18 PM (GMT -7)   
In winter I usually have annoying joint pain, especially in my knees and hips. I've been lucky it totally disappeared while I was pregnant. Unfortunately it is now back and WAY worse. It's both knees, hips, my lower back. I feel stiff and like my joints are swollen up, but they aren't. When I stood up this evening I felt like my legs would just buckle under me. They didn't but I had that sensation.

Is this what it is always like for you guys? What helps? I'm sorry for those of you who feel this all the time. I just was annoyed/bothered before, but this HURTS!
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 6/4/2009 8:32 PM (GMT -7)   
Yeah, it really sucks. It sucks even worse when you start to get it in your muscles and connective tissues, too. It makes you feel like you have a nasty flu all the time. Unfortunately, the only thing that really gets rid of the Crohn's related aches and pains for me is prednisone, at 20mg/day and higher doses.

I've just completed (well, almost.. down to 2.5 mg/day now) a prednisone taper in preparation for a discectomy and fusion. Apparently, pred can prevent bone from forming in the fusion. So now all the joint aches and all the rest of the myriad of Crohn's symptoms are back with a flourish.

Some people have gotten some relief from joint and bone pain with the TNF-A inhibitors (Remicade, Humira, Cimzia, Tysabri, etc.), but others say these meds make their joint pains worse. Imuran, methotrexate and the other immunosuppressants will sometimes help, too. Unfortunately, they don't for everyone.
Just trying to be a "Regular Member".


Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 5 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 6/5/2009 8:59 AM (GMT -7)   
I have joint pains in my right ankle, jaw and pinky finger, along with periodic migratory pains in both knees. I am finding some notable relief via acupuncture and an assortment of vitamins, herbs and supplements. I am trying very hard not to go on Imuran or Remicade, though I've heard Remicade can be a Godsend for arthritic pains. I take: Vitamin D, a multi, Align probiotic, Fish Oil, the Chinese herb Isatis Cooling (often used to treat Crohn's), Osteo-Biflex and turmeric (3x a day).
I also use Mobic once a day (it's an NSAID) that my GI said I can take. It definitely helps with the pain, but the swelling usually persists. Since I've added the other supplements, the swelling has reduced considerably and the pain has gotten even better. My ankle still swells some at the end of the day, but generally it's MUCH better than when I didn't do these things and I had gotten to the point where I was on crutches.
My maintenance drug is Pentasa. I also rub arnica gel on my ankle each day.

Crohn's-related arthritis can be very limiting and debilitating. I hope you find some relief!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/5/2009 9:05 AM (GMT -7)   
My guts are currently in remission, but my joints are forever aching. Its no longer the migratory Crohns arthritis and has developed (in my case) into osteoarthritis and some kind of spondlyarthropy. I take pain meds to take care of mine. Rheumy wants to put me on Humira or MTX but I am just not ready to go there. So I feel your pain.

PS: I will tell you that sometimes joint pain can be a precursor to a flare. So keep an eye on things or you might even want to talk with your GI about it.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 6/5/2009 9:53 AM (GMT -7)   
Remicade worked for me for tat for a while actually more of a reason i started it as opposed to my GI symptoms, I had adverse reactions to remi and then flared big time etc now I find that the Humira works wonders for my joints as well as my gut better than the Remi ever did
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


inflamed
Veteran Member


Date Joined Nov 2005
Total Posts : 1340
   Posted 6/5/2009 10:05 AM (GMT -7)   
Thanks everyone. I guess there's no easy way around it.

Nanners, thanks for the warning. I didn't think of that. My husband and I have both been worried that a flare is looming. I've been totally exhausted lately and have had minor GI annoyances too. I've been trying to keep a positive outlook (hoping I was pregnant instead, way better news right?), but we've both been watching for it. I have a colonoscopy next month, so we'll see.
Hoping to stay in remission after the birth of a healthy baby girl. On Pentasa during my pregnancy, went med-free 2 months to nurse (stupid), but back on Pentasa and still nursing.

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