anyone's arthritic crohn's pain worse than their gastro symptoms??

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snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 1/9/2009 12:06 PM (GMT -7)   
Hi everyone. In the last couple of years I finally seem to have gotten my stomach and gastro symptoms to have settled down to a much lower and more manageable roar, but my arthritic symptoms are intolerable!! I take Humira, 6MP, Entocort, Pentasa and 5mg of prednisone daily, and still run a sed rate between 60-90... There are times my hands get so swollen I can barely use them, or my knees will swell up so bad I can't even walk until they take the fluid out...
At this point my doctors don't even know what else to do with me because I'm on like every medication I can be and my stomach is pretty quiet, but it's obvious the inflammation is still rampant. I have checked my ANA and RH factors many times, they are negative. Some days are better than others, but most days I really feel like I'm at least 90 years old and I am really 48! Any advice??
Thanks!

Marla
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down


MaggieLou
Regular Member


Date Joined Apr 2008
Total Posts : 31
   Posted 1/9/2009 12:37 PM (GMT -7)   
Marla,  Since my last surgery for Crohn's in 2006, my arthritis has been terrible.  I see a Rhematologist and a GI.  My Rheumy says that my arthritis is a reslt of the CD.  I have a positive RH factor and my ANA was high.  My previous Rheumy diagnosed me with RA, but my new doctor insists that it is the CD.
 
I am also on Humira, but it does not help with the joint pain and swelling.  I wish I knew what to say to help, but I can give you some sympathy because I know exactly how you feel.  The pain is almost unberable at time.
 
Have you seen a Rheumatologist?  If not, you probably need to.  Good Luck and hope you are feeling better.
 
Susie
 
 
 
Susie
CD since 1972 (three bowel resections), Fibromyalgia, Inflamatory Arthritis, Degenerative Disc Disease, High Blood Pressure, Depression, Acid Reflux
Humira since 04/07 for CD, Prozac, Diovan, Cardizem, B12 Inj., Prevacid, and Lortab and Ambien as needed for Fibro
 


Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 1/9/2009 10:39 PM (GMT -7)   
Snow,
My only DG is Crohn's. The GI Docs explain my joint tendon and muscle pain as Crohn's Arthritis. I would not need any referals to see a rheumy, but I'm in no hurry to gain another DG when my personal Doc/friend has told me to avoid all the meds they might prescribe that I don't already have issues with. Sometimes I just wish I could bear to stay sitting, standing or lying down for more than a few hours. Other times I can sleep in the bed for 6-7 hours, but it takes me 3 hours to stand somewhat straight. I once told my Doctor that it was like I just woke up old one day. I have few GI symptoms, and it took 12 years to get from "unspecfied autoimmune disorder" to a Crohn's diagnosis.
              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 1/10/2009 3:22 AM (GMT -7)   
My body aches/pains were also worse than the Crohn's itself a few months ago. I went to a Rheumy. I was diagnosed with Fibro. He had me start taking a Vitamin D supplement daily (1000 iu.) After about a week, I started to notice an improvement. The best of luck to you!
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 10 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 1/10/2009 7:38 AM (GMT -7)   

My arthritis flares just before my scleritis, then my crohn's. It usually happens when I am tapering off Pred. Right now I have been on 7mg for 5 days when I was at eight, coming down 1mg per week. My right knee is now hurting and swelling.

It's a catch 22 when I have to walk to get rid of the weight I put on from so much Prednisone. I may have to go back up for awhile then try it again. It's a work in progress.

Dave D


Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/50. 11/08 had reaction to Remicade; trying to keep going with Imuran and Pred. Need corrective eye surgery and fitted for prism lense to correct that eye from turning out.  Life looks fairly good (literally) today.
Married with 4 grandkids.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/10/2009 8:15 AM (GMT -7)   
Yes my joint pain is much worse than the gut problems. Julie1014 I think I might give the Vit D a try too, I also have Fibro and Osteoarthritis thru out my body.
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"*

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 1/10/2009 8:40 AM (GMT -7)   
Sorry to hear about your joint pain. Been there and done that and don't want to do it again. Remicade and Humira have been known to cause Lupus, which in my case caused me to have the worst joint pain of my life. A rheumy diagnosed me and prednisone and MTX helped me imensely.

Take care,
Julia

snowbomb63
Regular Member


Date Joined May 2004
Total Posts : 61
   Posted 1/10/2009 10:44 AM (GMT -7)   
Thanks to all for your replies. I have seen a rheumy, that's who actually prescribed the humira, but I really have doubts that it is doing any good and am definately considering going off of it. Prednisone is the the only thing that seems to help, but the doctors always have problems with my staying on that long term.... It's all so confusing. I am also waiting to hear about where my Vitamin D level is at, so that may be helpful, wouldn't that be great! Thanks for all your help, it's always nice to know you're not alone.

Marla
Crohn's, Enteropathic Arthritis, Fibromyalgia, Daily Migraine

Humira, Entocort, 6MP, Pentasa, Topamax, Effexor, Ultram,
Sed rate sits in the 70's and can't seem to get it down

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