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desperate for help with the arthritis part of crohn's

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Posted 7/22/2010 11:52 PM (GMT 0)
Hi everyone... I am desperate for some answers. My Crohn's has been acting rather odd lately, lol, the gut issues are rather quiet and have been for the last six months, but my arthritis is so out of control, the pain is unbearable. I barely have use of my left hand, I'm using a cane, running daily fevers, night sweats and general all over achiness and pain. The only thing that helps is major pain killers, which leaves me in a stupor. I tried baking today and ended up crying and nauseas from the pain of stirring the batter!! My Rheumatologist tells me the arthritis with Crohn's ( my docs are fighting over whether mine is seronegative Rheumatoid or Enteropathic) is intensely painful and hard to treat. I have tried Humira, and Orencia and about to start Remicade on Monday. Please, does anyone else experience severe arthritis and if so, have you found relief? Thanks for listening.

Marla
Posted 7/23/2010 12:26 AM (GMT 0)
When I have several areas of inflammation simutaneously, my rheumy has put me on a short burst of prednisone to get the flare under control. When the problem is in the SI joints, I have had those injected with steroids under fluoroscopically guided xray. Remicade worked for 2 years getting on top of my spondyloarthopathy and enthesopathy. Humira didn't work that well. I am now on Simponi and it has worked the best of the anti-TNF meds that I have tried. I used a TENs unit with some success in the early years. I like my giant sized heating pad alot!
Posted 7/23/2010 1:03 AM (GMT 0)
I also get bad joint pain but yours sounds much worse. Humira has made a world of difference for me. Otherwise I take tramadol.
Posted 7/23/2010 3:32 AM (GMT 0)
I agree that prednisone should help alleviate the major pain for now. I found longer term relief by adding sulfasalazine on top of my Pentasa. I think the biologics are a good choice, too, and probably what I'll be taking soon.

I'm sorry you're feeling so bad and hope that you get better soon!
Posted 7/23/2010 3:59 AM (GMT 0)
They have me on plaquenil and prednisone. When they dropped the prednisone, the pain started back. I hope you have better luck than me. I had to get an apt with a new rheumy in a few weeks. I have been trying to get relief for months now with my local rheumy and am tired of it. The pain and fatigue are horrible.
Posted 7/23/2010 5:08 AM (GMT 0)
The Rheumy I saw in CA when I was living there had me try Lidoderm patches on the affected areas you can cut them to make them smaller and can use up to 3 at a time. You keep the patch on for 12 hours and then remove for 12. I was on pain killers for the arthritis for a while which didnt help much but these patches have been wonderful for me. Hope you find relief soon
Posted 7/23/2010 12:21 PM (GMT 0)
That is my major struggle right now... they can't get the joints under control. I have had to stop the entocort, I am back on prednisone because I couldn't walk my joints were so swollen and painful.. They are going to try methotrexate.

Wishing you much relief....
Posted 7/23/2010 12:26 PM (GMT 0)

I completely understand what you are going through.  My arthritis has been flaring for a year and half now and we can't get it under control.  All of the NSAIDS we tried hurt my stomach.  I've been on prednisone for a year and a half now and they keep trying to taper me off, but we can't do it.  The dose I'm at now doesn't allow me to do much physically but everytime I get worse, they just do another dose pack.  Tramadol isn't doing much to help anymore.  I've been on plaquenil for a few months now with no sign of any benefit so far.  I've switched again from Cimzia to Humira, although I know that neither have helped enough with the arthritis.  The only thing that was really helping was the methotrexate injections, which worked great, except they raised my liver enzymes and I had to stop them.  Salsalate, sulfasalazine, all of the normal things they tried either hurt my stomach or raised my liver enzymes.

The rheumy wanted to put me on Enbrel, but the GI said no, since my Crohn's has been hard to treat in the past and he doesn't want that getting messed up.  So, I have to remain on the biologics that treat both.  And I asked my rheumy about the lidoderm patches, as my mom let me try one of hers, and the rheumy said those are not approved for arthritis use so she couldn't prescribe them.  Voltaren gel helps sometimes, but not always enough.  I was almost crying laying in bed last night, it hurt so bad.  I used to work out at the gym 11 hours a week and now I can barely walk through the house.  I'm to the point now that, as much as I love my rheumy, I'm considering making the 2.5 hr drive to Vanderbilt to see if they can treat me any better. 

If you are able to find something that works for you, please let us know.  Good luck! 

Posted 7/23/2010 12:34 PM (GMT 0)
I have been on Remicade for 4 years. When I started , if I walked at all it was with a cane and even that was painful on the hand that held it. I have A S, I cant spell it but its in my spine and neck . The neck is bad enough that I have very little feeling in my left hand . Now i can walk and ride my Harley . Yes , i still have bad days but I'm not in constant pain . Hope the Remicade does the trick for you and you get some relief soon. It took about two months for me to feel a difference , it got better and better with each treatment.
Posted 7/23/2010 2:41 PM (GMT 0)
I have to admit I use troradol (which IBDer's should not use, but I was just going nuts). Tramadol works ok for me too.
Posted 7/23/2010 6:12 PM (GMT 0)
It's interesting reading all of this. I finally got disgusted too and made an apt with a new rheumy at Mayo to see one there. Mine is not under control either. The funny thing is, sometimes mine will just go away and I have no idea why but most of the time, it is relentless. I honestly think plaquenil makes mine WORSE! I hope we can all get some relief soon. It is comforting having others to talk to. Thanks for bringing up this topic again.
Posted 7/23/2010 11:00 PM (GMT 0)
It sounds silly, but regular relaxation massages might help. There's some evidence that this type of massage can push the body into a healing state, and make subsequent flares shorter and less severe.

This would be done in conjunction with meds, of course.

You might also benefit from talking with an occupation therapist. They can offer practical advice on managing tasks like cooking etc so that they are a little less exhausting and painful. There are also gadgets that can help, but I think it would be best for you to get some professional advice on those, rather than buying them now.

I'm sorry I can't offer any more constructive advice than that. I'm sorry you're in so much strife.

Ivy.
Posted 7/23/2010 11:33 PM (GMT 0)
Thanks to everyone for such nice responses and concern, it is so nice to know we're not alone.... it was especially nice to read that story about the Remicade success, I will be hoping beyond hope that works as well for me. I haven't tried methotrexate yet, I guess I will have to consider that as well. So many of us suffer so badly with this, as if we need more issues, but I do want to add that I am also seeing a pain doctor and maybe this could help some others... we worked our way up to Exalgo, which is a long acting Dilauded, one pill per day, and the pain relief was absolutely wonderful and no stomach problems, for me though, it caused unbearable nausea to the point of vomiting and I had to stop, but maybe it would be worth looking into for others here, it is relatively new. I miss it every day, lol. It's like that, when something works, it causes other problems, never ending cycle. Good luck to everyone and thanks so much

Marla
Posted 7/23/2010 11:40 PM (GMT 0)
P.S. I forgot I wanted to add , for some reason and this is the first time this has happened to me, Prednisone is not working to help the arthritis, even at 30mg. This is really concerning to me as well, it usually works well and quickly.

Marla
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