Blood Test and Undiagnosed?

[anyone]

Hey guys, its been awhile since I have posted here. I was diagnosed then I was undiagnosed. I don't know if I'm a real chrony or not. I have been having abdominal and joint pain for about a year and a half. I lost over 60 pounds at my worst and was down to 126 pounds. Right now, I'm back on Prednisone from my rheumatologist. I'm only taking 20mg which is enough to stop the joint pain but does nothing for my abdominal pain. Last time, I was taking 60mg.

Anyway, I had some blood test done and I was wondering if you guys think that they help me bolster my claim for Crohn's. This is silly. Every time I get a new piece of evidence its like "Hey dock can I have Crohn's now?" I hope they figure it out because my pain is not waiting for all of their test to start.

HLA - 27 Positive. This is usually associated with ankylosing spondylitis (AS). But I read that half of people with Crohn's have it. It seems like 25% of the people with this have an autoimmune disorder. I also read that only 8% of the population has HLA-27. So, of that 8%, 75% of those don't have anything wrong with them.

SSA Autoantibody Postive 6.3. It should be less then 1.0. This is usually associated with Sjogren's syndrome. I read that this antibody is rarely seen in a health person.

ANA 1:40 - This is a low tier result and does not hold much significance because 25% of healthy people can test with this but I'm not healthy so I think it might mean something.
AnA Pattern Nucleolar - This pattern is usually seen in Sclerodema and Sjogren's syndrome.

Sorry for the long post. Let me know what you guys think of these results.

 

[dannysmom]

I understand how you feel!! These findings are usually part of the rheumatologist's tests ... and I also read what you read. My son had the SSA and ANA positive when he was first sick. Have you had the antibody testing for Crohn's? (Prometheus IBD panel has several markers in it.) Is your ESR or CRP positive? Sorry you still have ab pain ... hope you can get more help.

 

[anyone]

When I was initially diagnosed with Crohn's, CRP was 58.2 and ESR was 41. I also had mild to moderate narrowing and concentric wall thickening of my terminal illium. Since I was on 60 MG of Prednisone, my inflammation markers have been normal. I have also had Pericarditis with abnormal EKG's, and inflammation of the liver with blood results and no Hepatitis in the past. I think I have an inflammatory condition but I don't know if it is Crohn's. My colonoscopy, and endoscopy were completely normal, which was done after I was on the 60 mg of prednisone. So, I don't know if that effected the results. I think I have a systemic inflammatory disorder, which can effect whatever system of my body that it wants. I have had symptoms that were heart related for a long time, then it was my back for years, then numbness and tingling in my limbs, and cognitive problems, obstructive and central sleep apnea, now it is my abdominal pain and joint problems.

As for Promethius panel, my doctor ordered it when I was in the hospital but they forgot to mark the Crohn's box. I'm completely not joking. My insurance agreed to pay for the test again, but by that time my gastro doctor dismissed the Crohn's diagnosis.

 

[dannysmom]

Pred could definitely cover up the Crohn's for your scopes - especially if that dose also stopped your abdominal pain. Has your rheumi mentioned Humira? My son's rheumi wants to try this for Danny ... but he is starting to feel better very gradually so we are waiting. Humir is used for Crohn's and many inflammatory conditions.

 

[anyone]

I don't have any diagnosis right now. I was lucky that he gave me the prednisone. I'm scared of being on prednisone for very long even if it is providing me significant relief. Its just that before, it was getting very hard to work with the abdominal pain and the significant hip joint pain/stiffness/fatigue. I went from being told that nothing was wrong, to you have Crohn's, to nothing wrong again. Its hard to see the light at the end of the tunnel. I will have to research this drug Humira. It would be nice to not feel like I have the flu every day of my life. I just seems like some of us might have inflammatory conditions that might lean to one condition but does not check of all of the boxes. I think we still deserve to be treated. I have everything but the positive biopsy. I wish they would have taken the biopsy before they started treating me with the 60 MG of Prednisone. I'm very sorry that Danny is going through this. It has had such an impact on my body and life I could not imagine being a child and trying to deal with it. I hope he gets relief.

 

[Earnellzwifey]

Anyone you sould very to what another person just posted, in having a variety of inflammatory issues throughout the body. Please look at Behcet's Disease, it is a rare autoimmune disease that attacks the blood vessels which in turn can effect any organ in the body. I have this and also was found positive for CD on the prometheus but negative on the scopes. I am taking Remicade and I have had some relief but nothing so far helps the tummy issues.

I hope that you find relief soon and please read this post. it is kinda long but might help.

http://www.crohnsforum.com/showthread.php?t=44354

If you have mouth or genital ulcers please really look into this disease.