lupus and gi involvement

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Regular Member

Date Joined Oct 2011
Total Posts : 61
   Posted 11/25/2013 4:56 PM (GMT -6)   
I've been reading about signs of gastrointestinal involvement in lupus and I have the watermelon stomach ( vascular ectasias, motility problems,and predominant vessels around my spleen. These are said to be signs of gastrointestinal involvement of lupus but my rheumy isn't addressing this. I read that these signs generally indicate that multiple organ involvement is possible requiring steroid treatment. This is my third rheumy. With all the medical proof of lupus he is still calling my condition undifferentiated diffuse connective tissue disease. Help. My health has continued to deteriorate for the past five years and I don't know what to do to get proper treatment before irreversible damage is done. What do I do?

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Date Joined May 2005
Total Posts : 7675
   Posted 11/25/2013 6:33 PM (GMT -6)   
Even if you aren't diagnosed with a particular auto-immune disease, the UCTD and any accompanying inflammation should be treated.

How are your symptoms being treated? Sounds like no steroids (usually prednisone) but anything else?

What does the Dr say when you ask, "I've read that these stomach symptoms can be part of UCTD, what do you think?" Is there something we can do to address this, or is there someone else I should see? I just want to feel better."

That's what I'd start with... don't worry about a diagnosis, focus on symptom relief. If he isn't moving fast enough, try another rheumy. One way to find one is to check out and find your local chapter. Then contact the local chapter to see which of your local rhemies is on their advisory board. Those very often are the Drs actually interested in helping!!!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Apr 2006
Total Posts : 1335
   Posted 11/27/2013 4:29 PM (GMT -6)   
Are you taking any suppression meds for uctd? If you have symptoms you probably should be on some type of long term treatment. I would get a 2nd opinion from another rheumy. Treating the underlying cause, your misdirected immune system, is the first step. Make sure you interview the doctor to make sure he/she is experienced treating autoimmune diseases.

Secondly, I would contact a GI doc who will work with your rheumy to address your specific GI problems. Maybe the primary treatment will take care of your symptoms but if not you should see a specialist.

It is difficult to deal with AI diseases, diagnosed or not, and also difficult to treat them. Managing your healthcare and doctors and advocating for yourself I very important. And don't be afraid to fire your doctor(s).

Hope you get some relief soon but there is a lot that can be done to both control your AI disease as well as the symptoms you have so they do not become irreversible.

Below is a link to the American College of Rheumatologists to find one in your area.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.
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