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Crohn's Disease
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Posted 1/7/2011 4:20 PM (GMT 0)
Start Whine

Woke up this morning and I'm so sore I can barely walk. I'm 40 and I look like a ninety year old man trying to shuffle across the room.

I was diagnosed with Crohns about 20 years ago but my symptoms are mostly related to the Crohns arthritis. My bowel symptoms are relatively mild. My arthritis symptoms are severe, I've already had operations on both knees to try to repair the cartilage damage the arthritis has done. I've had the lining of my left knee removed to try to stop the swelling from occurring. It stops it from getting real bad, but the swelling still happens. Also the arthritis almost immeadiately moved from being primarily in my knee to my feet, elbows and hands.

I'm on Cimzia and Prednisone to try to control the arthritis. Anyone have any similar issues? Perhaps any recommendations?

I'm a little bit overweight which I know is bad, but it's hard to exercise when everything hurts and the Prednisone makes me want to eat everything I come across.

End Whine

Thanks for your help,
Jim
Posted 1/7/2011 4:30 PM (GMT 0)
I take sulfasalazine to help deal with the hand pain. I'm still trying to figure out what to do with my knee and SI pain, but my hands haven't hurt in a good long time.
Posted 1/7/2011 4:34 PM (GMT 0)
whinning is good, I'm always wondering if arthrits would have came to you anyway or definatly brought on by cd. the reason I say is I know you can get arthrits because of cd, but do you think you might have been acceptable anyway. I have had cd for 40 years and never not a bit of arthritis, but my parents never had arthritis , so my genes don't carry them, I guess. I know there are other people have arthritis here, but is it the same with them, would they get it anyway? food for thought

Posted 1/7/2011 4:53 PM (GMT 0)
My arthritis is what drove my diagnosis of Crohns. I was about 20 and my knee swelled up like a watermelon. I went to 2-3 doctors before I got sent to a gastro doctor. I did the usual battery of tests and I was diagnosed with Crohns.

As for family history, I don't believe anyone in my family has any severe type of arthritis. My parents are in their early 70s and they have no real arthritis to speak of. I don't believe my grandparents had any arthritis. I'm sure they did when they were older but not at age 20 like I did.
Posted 1/7/2011 5:04 PM (GMT 0)
(((jperkin4))) Hugs my friend, I literally feel your pain. I have had CD for over 35 years myself. My Crohns tummywise has been fairly mild most of my years with it, but the joint issues just give me so much grief. I also have been diagnosed with Osteoarthritis and Fibromyalgia. I have had 3 surgeries so far on bone issues, and now need a double knee replacement.

Just wanted you to know you aren't alone. Hugs!
Posted 1/7/2011 5:17 PM (GMT 0)

Jim, I have the exact same problem (except I'm 29 and look like a 90 yr old woman).  Since my Crohn's is mild and nothing is working for the arthritis, I just stopped taking Cimzia and switched to Enbrel instead.  Still on prednisone, but hoping to get off of it.  It's been 3 weeks and the Enbrel isn't working yet, but I know it takes time.  My GI is just waiting to see if it will help with the Crohn's also...if not, he says I'll have to stop the Enbrel. 

I've tried just about every arthritis med there is and they all either hurt my stomach or elevate my liver enyzmes.  Methotrexate worked great (the only thing that has), but raised my liver enzymes too much so I can't have it anymore.  Have you tried it? 

Posted 1/7/2011 6:47 PM (GMT 0)
I've been on just about everything. I've had the same reaction to Methotrexate as you have. They've put me on it a few different times to see if they can get a dosage I can tolerate. It always ends up elevating my liver enzymes and they pull me off of it. I've been on most of the injectable drugs, Humira, Enbrel, Remicade and now Cimzia. Cimzia generally seems to do the best. Remicade was good but I got that Lupus reaction so had to get off that. I've been on most of the NSAIDs, most of them have either not worked or caused some sort of side effect that was not tolerable.

I'm going in today for a steroid injection, my rheumatologist is great about seeing me during flare ups. Hopefully I'll wake up tomorrow feeling a bit better.
Posted 1/7/2011 10:18 PM (GMT 0)

jperkin4 said...
I've been on just about everything.

What would I really know about Crohn's  ?  

A good friend has the disease and when I got crook with pneumonia, he sent me a bottle of OPC, and said  "Just take it for three months" and see.
Naturally I got better, and started to think that there was no real benefit in taking the Purple-Wonder.  That was until I realised that the pain in my fingers had gone.


Realising that I only took OPC and there could be no other explanation for the lack of pain, I bought more of the stuff and actually started my wife on it also.  Within three months, the hands that would not close, did now close and she went back to quilting which had previously been impossible, because she could not thread a needle.

Six months later, the crunching in my knees (when climbing stairs) had almost gone, and the pain was ZERO.  The stuff that I have been taking is OPCXtra.

But, accepting that it has a dramatic impact on Arthritis, now go back to my friend..  He is totally controlling his problems, without the wretched drugs that had as many problems as the treated disease.
When his specialist learnt that he was off his meds, he could not understand it.  He now well understands and now confidently recommends the safe alternative.

Give it a go for three months and see what happens !
I think you might be surprised.
..
.

Posted 1/8/2011 12:51 AM (GMT 0)
I feel your pain. I've had the worst pain that I have ever experienced in my life in my left foot. Horrible pain and numbness with a pins and needles feeling. It came to head this week when I woke up on Monday and couldn't walk. I went to the ER who sent me to the foot orthopedist who sent me to a rheumatologist. What I thought was a pinched nerve in my toe is arthritis brought on by either crohns or the psoriasis that I haven't been diagnosed with but show signs of on my finger and toe nails. The rheummy wants to put me on methotrexate and increase my dose of remicade. The gastro agreed to up the remi but doesn't want to move to methotrexate yet. The compromise was to increase my remicade which I received today, put me on a medrol pack and give me a topical nsaid. I hope this combo works quickly because I can't walk and have been out of work all week. I was thinking of trying spin and yoga once my foot heals and was hoping to find some natural remedies that might help slow/ease the progression of the athriitis. My tummy issues have been fairly mild and this came on so out of the blue. I guess it's just one more reason why CROHN'S SUCKS!
Posted 1/10/2011 5:17 PM (GMT 0)

Jim, your story is all too familiar.  I had to stop Remicade due to allergic reactions and loss of response.  They also tried Mtx at several different doses, but once they got it high enough to work, it raised my liver enzymes.  My rheumy now says Enbrel is my last resort and if that doesn't work, she wants to send me to Cleveland Clinic for a second opinion.  GI seems to think we could try Remicade again, but neither me or the rheumy like that idea. 

I was hoping you'd say the Enbrel had helped you more, since that's my only option now.  Been 3 weeks and I'm not really sure if it's doing anything yet.  Symponi isn't an option for me because insurance isn't currently approving it unless you take Mtx with it (according to my GI and rheumy, but others may be able to get it approved, I don't know).

Sorry you are also going through this too.

Posted 1/10/2011 5:23 PM (GMT 0)
Heat, Heat, Heat. It is the only thing non-med thing that works for me. As far as med's toridol (sp?) injection is excellent for short term, but can cause GI bleeding.
Posted 1/10/2011 7:45 PM (GMT 0)
Thanks for all the responses. It's now 3 days later and I'm feeling a bit better. The steroid injection has taken longer than usual to work, but I'm mostly functional at this point. I'm a little slow as their is still pain, but I can at least move around.

I was glad to hear that there are other people that mostly suffer from the arthritis. My rheumy and GI docs tend to act like my case is very unique. It makes it sort of difficult because it feels like none of the treatments are set up for me. I don't exactly have Rheumatoid Arthritis so those treatments aren't right and I have Crohns but most of the standard medicines are set up to block the standard Crohns symptoms. The newer biologic agents that a lot of us seem to be on help, but they've hardly been a miracle for me. The only thing that really seems to help me is prednisone which has awful side effects and I've been on it for far too long.

I'm still hoping one of these times I'm going to find the right drug or combination of drugs that will make me feel better.
Posted 1/10/2011 9:18 PM (GMT 0)
I actually refer to mine as bone pain, because mine is more then just joints.
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