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? for those with dx'd CD arthritis

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Crohn's Disease
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Posted 6/25/2014 6:39 PM (GMT 0)
I have been to the rheumatologist once and I got a ppht! reaction.  I am hurting incredibly the last two days and am walking around like Tim Conways old man from the Carol Burnett show (google it and you will laugh!).  My hips, knees, ankles, knuckles and neck HURT!  The stinging burning pain in the hips is new and so is the neck.  According to the xrays and 15 minutes the rheumy spent with me...it is not CD related and I don't have arthritis just a small tinge in my back (which I had surgery on a disk 13 years ago).

So my question....do you get puffiness at the joint with CD related arthritis?  My hands are puffy...but are really huge around the joints on my fists (sorry forgot the real anatomical term).  The joints actually look like deep dimples. 

Posted 6/25/2014 6:50 PM (GMT 0)
Yes, I did have swelling in some of my joints. I don't know how an x-ray can eliminate IBD-related arthritis - it should be the opposite. Rheumatoid arthritis causes joint damage that is visible on imaging studies, IBD-related arthritis does not.
Posted 6/26/2014 11:31 AM (GMT 0)
Thanks kazbern...he actually decided that it wasnt CD related even before the xrays!  Was not thrilled after the call after the xrays.  It basically was you don't have anything wrong feeling.  So I have stopped talking about with my docs and am just trying to deal with it when it rears up.  This week has been pretty bad.  The hip is really bothering me.  I am back to using our railing to pull me up the stairs---but I dont have any problems...oops sorry bitter table for one please.
Posted 6/26/2014 1:58 PM (GMT 0)
Find a different rheumatologist.
Posted 6/26/2014 5:44 PM (GMT 0)
Sorry you're dealing with all this. I do get a lot of swelling with my CD related arthritis when it gets really bad. In the beginning it's just pain but as the flare gets worse I get a lot of swelling.

I agree with Kazbern, if you can, find a new rheumatologist that will take your symptoms seriously. I've x-rays done on a lot of my joints and none of them have anything remarkable on them, but my arthritis is debilitating. So like Kazbern said, I don't know how the x-rays can rule out CD related arthritis. If you have to pull your self up the railing on your stairs, that's pretty bad. I've had to crawl a lot when mine flares up. It's no joke. I hope you can find someone who will take you seriously and offer you some relief.
Posted 6/26/2014 5:45 PM (GMT 0)
Yeah, you should have seen me in the days of my hand pain. I'd walk around like I'd just had a manicure because I couldn't use my hands for anything. Not typing, not driving, not cooking. Horrible.
Posted 6/26/2014 6:15 PM (GMT 0)
I was diagnosed with Crohn's arthritis in 2009 and even spent a year or so on methotrexate, but my last two rheumies (since I've moved) are adamant that it's not arthritis because my Crohn's meds would have helped it; rather, they say it's just arthralgia (with the exception of my knees, which have osteoarthritis) and have given me various meds to deal with the pain. I can't take true pain medication because of my constipation issues and the pain patches and creams don't help.

It's frustrating but I'm not sure what to do about it. I'm currently just focusing on my Crohn's and trying to get that better in hopes it will help with the joint pain. Finding a good rheumy, as I've learned, is really hard.
Posted 7/1/2014 6:57 PM (GMT 0)
I just found this post, so I'm weighing in a bit late. My biggest deal for the last 12+ years is the arthritis. And I had about the same experience with the only rheumatologist I ever saw. I think the biggest problem is that these specialists, including the GIs, aren't trained in the area of enteropathic arthritis.

Certain joints in my body do show visible swelling at times but others don't. When it's bad in my face, I will get swollen red patches in the TMJ area. I have been in arthritic pain non-stop since 2003 when I flared for the first time after colon surgery. I know I'm a good candidate fore the biologics, but the cost factor alone puts it out of reach.
Posted 7/1/2014 8:21 PM (GMT 0)
Jasanne...have you looked into the assistance from the drug companies for the biologics? I haven't used it, but it looks like there is a lot of help available there
Posted 7/2/2014 4:40 PM (GMT 0)
Gumby,

I haven't tried assistance with the biologics in a long time, but dealing with other family members' attempts with their prescriptions that weren't covered by insurance, well, it's not as cut and dried as they want to make out. Most recently my husband's dr. put him on a new rx that the dr. thought would cost only 4 dollars through their assistance program, BUT it would only cost 4 dollars IF you had insurance that had a 50 dollar or less copay. No help if you had no drug coverage. Our current drug coverage is only a bit of repricing and thereafter a family deductible of 8000 dollars, so we pay for all our medications. We have to pay for the entire premium on my coverage also as my husband's employer quit paying spousal coverage. At one point we had dropped my coverage because of this.

The only biologic we attempted to get coverage for was Remicade years ago and the infusion costs were the real cost factor. But I have other reasons why aside from the costs. But I sometimes wonder if I'm the only CD patient that has to consider finances. Surely not.
Posted 7/2/2014 5:01 PM (GMT 0)
An $8000 deductible is outrageous. Unless you end out in the hospital, it is like not even having insurance. I am sorry to hear that!
Posted 7/2/2014 6:45 PM (GMT 0)
Good old Blue Cross! I know those who have bigger deductibles.
Posted 7/2/2014 7:18 PM (GMT 0)
Good Afternoon,

My hubby has had Crohn's related arthritis for years and has been hospitalized on one occasion as he knee and ankle were  so painful as well  inflamed ETC. from the arthritis. Eventually the Dr. decided the ankle was pseudogout - the old run around which is common with this disease.

Peripheral arthritis usually affects the large joints of the arms and legs, including the elbows, wrists, knees, and ankles. The discomfort may be “migratory,” moving from one joint to another. If left untreated, the pain may last from a few days to several weeks. Peripheral arthritis tends to be more common among people who have ulcerative colitis or Crohn’s disease of the colon. The level of inflammation in the joints generally mirrors the extent of inflammation in the colon. Although no specific test can make a definitive diagnosis, various diagnostic methods—including analysis of joint fluid, blood tests, and X-rays—are used to rule out other causes of joint pain. Fortunately, IBD-related peripheral arthritis usually does not cause any lasting damage.

When he was first dx everything was the gut - but over the years this disease has taken it's toll on my hubby.

I wish you the best.

 

Kitt

Posted 7/5/2014 1:34 PM (GMT 0)
Kitt made a good point about the arthritis' "level of inflammation in the joints generally mirrors the extent of inflammation". My GI told me, concerning my arthritis' constant hanging around, that occasionally they do see patients like me that seem to have a level of arthritis that outweighs the gut's activity. I've had arthritis symptoms as long as I've had Crohn's symptoms, but my arthritis symptoms got far worse after I came out of remission from my colon surgery. Part of it may be osteoarthritis, especially since I had long-term pred. use and I also spent 10 yr. dairy free, although I took calcium supplements. My mother had really bad osteoarthritis.
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