Symptoms of RA? Tests to ask for?

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tuper
Regular Member


Date Joined May 2010
Total Posts : 28
   Posted 7/17/2010 6:13 PM (GMT -7)   
Hello,
 
My husband was diagnosed with Crohns in 2008.  He's had a couple flares, but so far nothing too bad.  Occasionally over the past 6 months, however, he's had severe back pain.  His gastro referred him to a rheumy doc.  The rheumy doc told him it was sacroiliitis, gave him meloxicam, and sent his on his way.
 
On 1 May, he broke his leg and foot (dropped his motorcycle on it, D'OH!)  His back was hurting a bit before the accident.  Although the bones are healing well, the rest of his body has gone to heck!
 
His jaws are non-functional.  He can't close his teeth or open his mouth.  It's been like that for over a month.  Today the left side is actually swollen a little.  It makes his ears hurt too.  His knee is messed up, he thinks from the heavy aircast.  He has messed up his good ankle now (somehow) and literally cannot walk at all.  He is always running a slight fever.  He is in so much pain he shakes sometimes.  His shoulders hurt (again, he claims from the crutch use) and of course, his back still hurts.
 
He's in a bit of denial, but I think he has something else going on.  We were worried about RA when we went to see the rheumy doc, but he didn't mention it.  The blood test for the HLA-B27 was negative, but that was the only test he ordered.  What else should we ask for when he goes back in?  What other symptoms should we be looking for?  Does this even sound like it could be RA?  If not, we don't want to raise any red flags.  He's in the military and trying his best to stay away from the med board as long as possible.  I think he thinks he can suffer through it and it will be ok.  I'm beginning to wonder if his health is worth his career.
 
Sorry, I guess I'm venting a little here too!  I'm taking care of him, and I hate seeing him in so much pain.  He was always SO active and physically in shape and healthy.  Seeing him like this tears me up. 

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 7/17/2010 9:41 PM (GMT -7)   
If your husband has been diagnosed with sacroiliitis, then the other joint problems could be part of the disease causing the sacroiliitis. Somewhere between 5 - 20% of people with Crohn's develop spondyloarthropathy and enthesopathy. This type of arthritis acts independently of the CD. Stressors, like a motorcycle accident, can cause the problem to flare.

I was orginally diagnosed with spondyloarthropathy and enthesopathy. My right hip was so inflamed I had to use a walker to get around. My diagnosis was changed to ankylosing spondylitis because I have SI joint involvement and am HLA-B27 positive. One does not have to be HLA-B27 positive to have either disease.

Is your husband having increased problems with his Crohn's since starting the Mobic [meloxicam]? It is a NSAID which some with Crohn's find causes an increase in gastrointenstinal issues. I can't take any NSAIDs without getting lots of diarrhea.

Has anyone discussed using medications like Remicade, Humira, or Simponi to treat his sacroiliitis? This type of drug is used to treat Crohn's and sacroiliitis associated with Crohn's. How many years until your husband can retire? If he has just a couple he might be able to avoid the med board. I fear that the progression/worsening of his joint problems are going to draw the attention of someone.

I forgot to mention that the inflammation that causes sacroiliitis can effect just about any joint. I have had problems with my shoulders, elbows, hands, fingers, hips, knees, Achilles tendons, plantar fascia and my eyes.
Moderator Crohn's Disease, IBS, and Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/18/2010 5:44 PM (GMT -7)   
He could have one of any number of autoimmune disorders-when you have one you are at greater risk for others.
The rheumy needs the additional information about these new joints being affected. Then the doc will probably know what tests to run.
Some that might be run include, ANA, Anti-CCP, CRP, SED, RF, and a bunch of others-depending on what the doc suspects.

tuper
Regular Member


Date Joined May 2010
Total Posts : 28
   Posted 7/19/2010 8:39 PM (GMT -7)   
Thank you for your replies, they really mean a lot. He has 16 years in next month. Sadly, 18 is he majic number that he will get automatically retired if he goes to the the med board. No one has dicussed anything other than the meloxicam with him so far. I think they want to wait until things get bad. His CD symptoms are decently under control......he passed some blood last week and has had some D, but he is better this week. It's the joints that are the main issue at this point. He is on Asacol for the CD, but he still gets mild to moderate flares while on it. So far, his first flare (in 2008) has been his worst.

I finally convinced the man to call the rheumatologist. He had a followup in September anyway, but they are going to "try" to work him in sometime before that. I don't think he let them know that he cannot function right now.

He had to go to the worthless dentist today to try yet another mouth guard for the TMJ. "If it doesn't work for another couple of weeks, then you can go to an oral surgeon." If he goes another 6 weeks without eating right, I'm afraid he's going to starve to death! He is literally so skinny I'm VERY worried about him. The weight loss is showing in his face and even his skull! He only weighs about 110 lbs right now.

He is really depressed, and I have NEVER seen him like this. We have been married for close to 11 years. We have been through some stuff, that's for sure! But this is the most depressed I've ever seen him, and that includes his tours in Iraq! I"m stressed and worried, but try not to let him know. He gets so grouchy if I voice my concerns, so I keep them to myself.

GAH! This turned into another vent, sorry! :) It just sucks not knowing what exactly is going on, so he obviously isn't getting the care he needs right now!

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 7/28/2010 1:09 PM (GMT -7)   
I am so sorry to hear what is going on with you and your husband. I don't know what may be going on with him but as was stated above usually with one auto-immune disease comes some form of another. I will keep you both in my thoughts and prayers and hope he can get in sooner. Heather
Mama6


tuper
Regular Member


Date Joined May 2010
Total Posts : 28
   Posted 8/1/2010 10:57 AM (GMT -7)   
Just wanted to give a quick update. 
 
My hubby was able to get into the Rheumy.  By that time he was basically only able to move around in a wheelchair if he had to go any real distance.  The doctor seems to think that the joint issues are just related to the Chrons and isn't RA.  He didn't order a single test.  Although he did put him on sulfasalozine (sp) and more prednisone.  Hubby is doing a touch better once he got the steroids in him.  Hopefully the other medication will kick in soon and start doing some good.
 
His commanders put him on convalesent leave for two weeks, so that's supposed to help with stress.  They are getting very frustrated with the doctors though, because he isn't getting help quick enough in thier opinion.  I tend to agree, as I think the doc should have ordered an arthritis panel or something. 
 
But it is what it is! 

tuper
Regular Member


Date Joined May 2010
Total Posts : 28
   Posted 8/3/2010 7:22 PM (GMT -7)   
Well, another update. I don't really have anyone to talk to that understands, so this board gets it! Sorry!

The doc only gave him 12 days of steroids, so he is done now, and he is doing worse again. Back to not being able to get out of bed due to pain, which means I have to rinse out pee bottles for the man. He is supposed to go back to work on Friday, but I don't see it happening. His ankles are VERY swollen and red tonight.

I've convinced him to contact the military doctor tomorrow. Maybe he will get him on steroids for a little bit longer. I know that long term is bad, but he needs them for more than 12 days!

He has seen 5 different doctors and no one can figure out what is wrong with him.

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/3/2010 7:24 PM (GMT -7)   
It is so frustrating when you feel like there is something that they are just missing, I know this all too well. Especially with them not running any further test. I can completely side with you on this point too. He is lucky to have you as his wife and advocate. I think he needs to keep a log of the new conditions that have risen up. He seems to be a little reluctant so you may have to be the one to do it. Then present the rhuemy with this evidence and request new test. I hope they start to do something for him, I know how much that would help you as well. Good luck, and stay strong, I know you know that he needs you. Your in my prayers. Heather
Mama6
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