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petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 9/19/2009 10:25 AM (GMT -7)   
So after thinking that I finally had a diagnosis for the past few years I am back to square one...no clue what is wrong with me. The GI docs do not feel that I have true Crohns and have taken me off Remicade. To give you a little background I'm 40 years old and I have had undiagnosed tummy issues (mainly vomiting with occasional d) since I was 8. 3 years ago a random blood test showed anemia, elevated platelets and hashimotos. A capsule study showed ulcerations in my small intestines leading to a crohns diagnosis. Tried different meds and wound up on Remicade but my symptons never cleared up 100% and my platelet count has never gone down. GI feels the meds are doing more harm than good since the symptoms aren't under control. This past July wound up in the hospital with cyclical vomiting and 4 episodes of unexplained angio edema. The tests for allergies and other things were all negative. Now I've been getting a rash on my face which the derm thinks looks like a lupus rash. My docs all work together and my allerigst/immunologist feels that I have an unusual autoimmune disorder which shows symptoms of many different illnesses but technically doesn't meet the criteria to diagnose any of them. I'm so frustrated. I just want an answer.
Jodi

Remicade and 6MP


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 9/19/2009 11:12 AM (GMT -7)   
I'm sorry - it's hard when your doctors don't know what's going on. Hopefully they'll figure it out soon. (((hugs)))

If you are exhibiting a lupus rash, it's probably good that they are taking you off the Remicade, because remicade is known to sometimes cause a lupus-like syndrome.

Do you have any blood in your stool? If you have iron deficiency anemia, you probably need to supplement with iron, or get an iron infusion. Also, get your B12 levels checked, if you're deficient in B12 (and it's possible if your terminal ileum is inflamed), they can give you shots of B12, which should make you feel better (at least it'll help lift the anemia related fatigue). Hashimoto's is linked with anemia . . . so that could be the other reason for the anemia (taking iron, folic acid and B12 should help with this - my mother has hashimoto's and she would be anemic if she stopped the regimen of folic acid, B12 and iron supplementation).

Also, a high platelet count could be because you are bleeding somewhere (perhaps the ulcers in the small intestine). Platelets help with coagulation (body's mechanism to try to stem the bleeding). When my husband was in the hospital, with nothing but bloody diarrhea, his platelet count was through the roof. Once his bleeding was under control, the platelet count came down to normal.

Have they done an upper endoscopy? They should be able to collect biopsy samples, which should help figure out if you have crohn's, and how severe the inflammation is, and also if you have any stricturing. It sounds to me like they need to do more diagnostic procedures to figure out what's going on with you. Also, there is a prometheus labs test that looks at genetic markers (I think) to see if you have a predilection to crohn's disease.

While not being able to pinpoint the exact autoimmune disease that is causing your problems is not so great, one good thing is that if they are at least certain it is autoimmune, most autoimmune diseases have the same treatment options (steroids, immune suppressors like 6-mp, imuran and methotrexate, and anti-tnf agents like Remicade, Humira and Cimzia). Perhaps steroids will bring down your symptoms, while your doctors try to figure out what's going on?

Hang in there. Hope you get answers soon.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 9/19/2009 12:15 PM (GMT -7)   
The thing is my last endoscopy, colonoscopy and capsule study have all been normal. Even the capsule study that diagnosed me 3 years ago only had the bleeding ulcerations but not the typical inflammation that goes with crohns. The anemia cleared up about 2 1/2 years ago. I did have a test show low B12 about 2 years ago. I got a B12 shot and have been fine ever since. I was tested for lupus a couple of years ago and it was negative. I'm sure this new test will be negative too. I won't take steriods unless it is only for a couple of days if I am having breathing problems. For now the docs just have me taking medication for the hashimotos and for the rest we'll see what happens. I just wish that I could find one doctor who can figure out exactly what it is I have. It's the angio edema that is most distrubing because my tongue and throat swell. I carry and epi pen and benadryl but it would be nice to know what sets it off.
Jodi

Remicade and 6MP

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