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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Jun 16 11:30am | Replies (1392)

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@danrofohio

Dot,

Thank you for starting this. Right now, I am very discouraged because of my experience with mesenteric panniculitis. I was diagnosed in March of 2011 when excruciating abdominal pain caused me to vomit repeatedly, and I went to the emergency room at my local hospital. I had been having pain from the panniculitis for months or years, but I just ignored it until it became unbearable. A the ER called in a surgeon, because they were afraid of an aortic aneurysm. He order a CT scan and whoever read that made the diagnosis which the surgeon confirmed with endoscopic surgery.

The surgeon treated me for the next three months by starting me on a course of prednisone (40mg for a month, then 30, etc.). After the first month, my symptoms were bearable, and a follow up CT scan showed the mass to be smaller. However, subsequent scans showed no improvement, and my symptoms did not improve either. So the surgeon said that I needed to go on to a research hospital, and I chose on four hours away because their rheumatology and GI departments were rated as one of the best in the country.

On my first visit to the research hospital, I saw a gastroentoligist and a rheumatologist separately. The GI wanted me to see an oncologist which I did, and the rheumatologist presecribed azathioprine (Immuran) while continuing the predinsone. The oncologist didn’t find anything, and after making some adjustments with a very slow taper off the prednisone, my symptoms when away. I was virtually symptom free for eight months and had hopes of being cured and being able to go off the azathioprine.

Then about six or so weeks ago, the the symptoms came back. At first they were mild and rare. Now they occur multiple times per day and are very painful. Meanwhile, I needed to prepare for my next follow up with the rheumatologist at the research hospital in January. I was supposed to call the oncologist and ask him if I should get another CT scan. I did that about four weeks ago and left a message with his admin assistant. The office never returned the call, so I called back about two weeks later, and the assistant said she was going to call me that day, because the oncologist wanted her to ask me if I had CT scan recently. When I told her no, she said she’d pass that information along to the doctor and get back to me in a day. That was almost two weeks ago.

I could call the rheumatologist, but I don’t think he really understands why the panniculits is a problem. Based on our previous discussions, I seriously doubt that he has any idea what else to do to treat this. (He had one previous patient with mesenteric panniculitis, whom he treated with azathioprine.)

I would appreciate any suggestions that anyone has.

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Replies to "Dot, Thank you for starting this. Right now, I am very discouraged because of my experience..."

Have you tried to reach out to someone at the Mayo clinic? I went to the clinic in Rochester MN. These cases are rare (and as I know first hand, pretty scary). The team there seems very experienced and well versed with this. My doctor there was Dr. Glenn Alexander, but their is a great team, and I am sure any would be able to help you.

I am about 8 months or so behind you. I am finally off the pred. I have never taken Immuran. I feel as if I am waiting for the bomb to go off again at any time.

Hang in there but do whatever it takes to get the best help you can.

Hello, have you had any more information on this disease or any updates on treatments ??

I have a semi-annual appointment scheduled at the research hospital next week. It will be very interesting to see if the doc has any ideas on how to treat the recurring symptoms.

Please keep in touch and let us know how it went and what you found out. Good luck 🙂

I just posted an update below. Mercifully, I have been off the pred for 2 plus years now and the bomb has not gone off again. I sure hope I am not jinxing myself!!

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