update on crohn's arthritis situation

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Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 1/18/2008 5:31 PM (GMT -7)   
Ok so a couple of weeks ago I posted about having a late night trip to a&e due to massive hand/forearm swelling. I'm glad to say that the fluid retention type swelling has gone with the help of a tubigrip bandage but the affected wrist and hand is still quite mishapen from solid lumps of inflammation and is soooo painful now and my right wrist is also affected but not as bad as the other.
Saw a rheumatologist yesterday and after loads of prodding and bending and tests she's concluded that I have what is apparently known as Type 2 Crohn's Arthritis. Apparently Type 1 is your typical reactionary arthritis where the inflammation appears with active Crohn's, Type 2 is where it appears without any evidence of active Crohn's disease and is the only inflammatory issue in the body, I've had tests done just to make sure that its not actually rheumatoid arthritis as my Crohn's is still fully in remission. They've basically said wait and see for a few weeks to see if this arthritis flare subsides on its own as they don't want to "play around" with my medication in case it upsets the Crohn's as the usual steroid route isn't an option as they never worked well for me, anti-inflammatories are a no-no, I'm allergic to pentasa type drugs etc. So if it doesn't get better my options are to switch me to methotrexate injections instead of tablets as that might work better, theres one other drug they could try but is extremely toxic with methotrexate and infliximab I only get through my GI and not from the rheumatology department so its looking a bit bleak.
Just finding it so hard. In the mornings I can't do anything for myself. I have to wake up an hour early to take pain meds so that when I do try to get out of bed its easier, even then I have to get myself up using my elbows, I can't make or carry a cup of tea, can't wash myself, takes me ages to dress myself. I literally have to sit and wait for a few hours for the doses of pain meds to kick in and gently move my joints until they've loosened up a bit. If I get up at 10am it'll take until between 3-5pm for me to able to use my hands vaguely normally, by early/late evening they're loads better but then its time to sleep again and go through the whole thing again. I'm signed off work and uni as I just can't do anything, can't do my essays and theres no way I'd physically be able to get myself dressed etc to get to lectures during the day let alone write notes in them! Originally I was grateful that it was only affecting my wrists and not my hips like before as then I couldn't walk but now I'm just so frustrated and low about all of this. My friends I live with have to do so much for me and I know they don't mind but it does make me feel like such a pathetic burden. I should be going out with them having fun like any other 20 year old student but instead....argh not even going to punish you guys with this rant anymore! Its taken me long enough to type anyway tongue  
So theres my update, has anyone else ever had this Type 2 arthritis? Anyone with arthritis of the wrists/hands who can suggest anything to make life a bit easier? Sorry for rambling
20 yr old female. Diagnosed with Crohn's Disease 2002
Crohn's arthritis in fingers, wrists, jaw and sacroiliitis
4 1/2 years remission with methotrexate and occasional infliximab!

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Date Joined Apr 2007
Total Posts : 32602
   Posted 1/18/2008 5:37 PM (GMT -7)   

A pathetic burden you are not but a brave and courageous young adult you are.  I am so glad you have such a wonderful support system.  Remember what goes around comes around and some day others will be helping your friends, you may be the "other" doing the helping.

I am so sorry to hear your talking of your pain. Stay with us and know how much we care. Gentle Hugs to you.

Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* http://www.healingwell.com/donate *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Blue Velvyt
Regular Member

Date Joined Sep 2006
Total Posts : 194
   Posted 1/18/2008 6:03 PM (GMT -7)   
Cant say I do yet, but I am currently going through testing to discover why sections of my body are swelling and hurting, for instance there is a large swollen area near my left armpit, along my chest.

It is also for some reason killing my left shoulder and neck, it has been this way now for 3 months, bone scan clear.

My reumatologist said he saw arthritis in the scan but a fairly normal amount....

Im at a loss now, painful swelling, unable to raise my left arm now and I was told to go back to my primary and start over again. I have had other swollen mass's ofer the last 3 years, 1 removed through surgery, was told simply "Its not cancer" when I asked what it was, I was told "Probably crohns related"

Not sure what to do now, will throw it at my GI again and hope he will figure it out, maybe they will never know, but I sure theink it shouldnt be from lack og looking on their part
I am, as always, sorry to hear about your predicament and really hope it improves quickly, will be thinking good thoughts for ya. (and hope mine does to and all the rest of my crohmie buddies :))

New Member

Date Joined Nov 2006
Total Posts : 16
   Posted 1/19/2008 6:49 AM (GMT -7)   
For over a year now they have been trying to find out why and what is causing all my pain. I have had crohns for 20 years and have never had to deal with the joint/muscle pain. I first started with the swelling,redness,and severe pain in joints/muscles that would move from place to place. I have had every xray,blood tests and scan done possible and nothing found. I no longer get the swelling or redness but still get the pain. Still not quite sure if it is actually in my joints or muscles but I do know as the day goes on and I use something over and over for example I work on a computer for 8hrs a day my wrists and finger hurt so bad and I can hardly get them to move. My GI says it is crohns arthritis but the arthritis MD says it is fibromyalgia. So still no answer on what it is or what is causing it. So what I have been doing that has helped a lot is taking a pain med and a muscle relaxer every night before bed and exercise. I know that the thought of exercising seems impossible sometimes but what I do is work parts of my body that are not hurting and with time the pain started to get better. Hope you start to feel better soon I know it can be very fustrating at times but hang in there.  

Veteran Member

Date Joined Nov 2003
Total Posts : 7314
   Posted 1/19/2008 11:29 AM (GMT -7)   
Lilcrohnie, I've been Dx with Anylosing Spondylitis. It's a type of auto-immune, inflammatory arthritis that is commonly associated with Inflammatory Bowel Disease. Other names are Spondyloarthropathy, Spondylitis, Enteropathic Spondylitis and Reactive Arhthritis.

Here, in the US, there is technically no real Dx called "Crohn's Arthritis", although many Docs, especially GIs, blow off peoples symptoms with this expression. Certainly, the older Crohnies may well have a certain degree of Osteoarthritis, which is a wearing down of the joint and coomon as we age. Many others may well have Rheumatoid Arthritis, which is yet another auto immune disease, but both of these forms of arthritis are very different from the inflammatory arthritis that is common for us.

Most people with an inflammatory arthritis begin the process with joint pain that cannot truly be Dx. There is little visible damage to the joint on x-ray and often, there is little or no obvious swelling. I suffered for over 20 years with what they called "tendonitis" when in fact, I was having inflammation of the tendons, ligaments, synovium (lining of the joints) and even of the bone.

Like you, I suffer the most in the mornings, or any time that I sit still for too long. I walk a fine line between activity and rest in order to keep my body happy. First thing every morning is pain meds and then slow gentle stretches, usually while in the shower under hot water.

I'm been treating both my gut and joints with Humira every week for almost a year now and although I am not great, I am considerably better. My Rheumy wanted to add Methotrexate to my meds, but I refused it and did give in to a daily dose of 20mgs of pred. That helped some, but not as much as I'd hoped and I've gotten to the point where I've sort of accepted that this is just where I'm at. I'll never be pain free, but I am better able to move than I had been last year.

There's an excellent website about Spondylitis that I'd recommend you take a look at. The Spondylitis Association of America has a great deal of info about the different forms of SpA and the treatments. I hope that this can offer you some help, if not physically, then at least mentally and emotionally through knowledge. It so much easier to cope with medical problems when you fully understand them.


Best wishes to you.

Keah a.k.a. Wormy
 God helps those who help themselves.
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