update on crohn's arthritis situation

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  

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

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 :))

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.

SPONDYLITIS.ORG

Best wishes to you.