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

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Posted 1/9/2009 7:06 PM (GMT 0)
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
Posted 1/9/2009 7:37 PM (GMT 0)
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

 

Posted 1/10/2009 5:39 AM (GMT 0)
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.
Posted 1/10/2009 10:22 AM (GMT 0)
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!
Posted 1/10/2009 2:38 PM (GMT 0)

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

Posted 1/10/2009 3:15 PM (GMT 0)
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.
Posted 1/10/2009 3:40 PM (GMT 0)
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
Posted 1/10/2009 5:44 PM (GMT 0)
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
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