Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).

I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?

Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!

Bill

Interested in more discussions like this? Go to the Digestive Health Support Group.

Hi: I have a similar diagnosis. Just take time to look up all meds; tamoxifan is an old med. recommend read up on Mesentery disease; it is on National Order of Rare Diseases (NORDS). DIET IS IMPORTANT TO ALL DISEASES. It can help with inflammation which is a key element of this disease. Controlling inflammation helps with survival of any disease; do diet, rest, self care are all critical. Hopefully Cleveland Clinic and Mayo will come up with break through cures for rare diseases — I think CELL THERAPY will likely be one- that and dietary intervention are my main focus. Most meds are more detrimental than actual cures!
Just my opinion.

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@okgal

I have been recently diagnosed... I do have another autoimmune disease - mixed connective tissue disease. the GI Dr prescribed Prednisone to start with, I have been taking that for just over 30 days now. Will begin taking Tamoxifan this month, after 2 weeks I will begin reducing the Prednisone (by 5mg every 7 days).
I asked about changing my diet, he said the diet has nothing to do with it...
Anyone else taking tamoxifan?

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Are you being treated at Mayo? How long did it take for u to get seen? Did u stay there while they were testing to find the autoimmune and MP diagnosis?

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No I am not being treated at mayo... I was diagnosed with mixed connective tissue about 10 years ago, the MP symptoms started a little over a year ago. I ended up in the ER while traveling, where the CT scan showed the MP. My GI wanted to do all the normal tests, colonoscopy, blood tests, stool samples, etc first. So from first complaint to diagnosis/treatment was about 8 months... no hospital stay.
The Prednisone at the higher level is helping, but of course I can't take it forever - says the tamoxifan should help?

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@adam25

Thanks hopefully they find some ways to ease your symptoms. How long after doing the admissions did u get into Mayo? Did you have to stay a week initially or make any other trips?

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I only joined the Mayo clinic a couple of months ago I live in Australia travelling to America next March hoping to get an appointment face to face then.

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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Hello
I am new here. Just been diagnosed last Thursday on this Mesenteric Panniculitis! Never heard of it before!
They gave me only paracetamol ibuprofen and endone to manage the pain.
The problem is the pain in my tummy feels more bearable but my back is killing me.
My doctor said no to prednisone but I will request that again!
I wonder since this is an autoimmune issue if we should see an immunologist instead of gastroenterologist! 29 years ago I was ANA positive and on prednisone meds. Connective tissue disease. I wonder if its back! I will request to test for that and give me better meds.
I have been unable to work last week and today I'm going back and I really don't know how am I supposed to work with my pain!
I will find out soon!

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@lisas444

Hi Ron - i'm going to send you a private message on this page here. My daughter has sclerosing mesenteritis as well and diagnosed at age 14 and has 17 abdominal surgeries now with another one about to happen next month for multiple bowel obstructions and has also been on TPN off/on since 2008 and full time the last 2.5 years. We've been in Cleveland now for testing and evaluation for a bowel transplant to hopefully cure her of SM. We are in Tulsa, Oklahoma. We have an ever growing group with 207 members in it with people all over the US and several also from other countries all with SM or MP. We have a handful there in Florida that i'd love to put you in touch with. We have a good handful in our group with severe SM/MP and other are mild and some are in between and we've lost 3 in the past year with SM after their diagnosis. 🙂 My name is Lisa Schwartz in Tulsa, OK

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Hello! I'm not sure if this thread is still going so many years later!
I was diagnosed with MP on CT scan last summer. My gastro didn't really seem to know anything about it and was taking his lead from the radiologist. I've had symptoms for about 8 years but have been bloated (look like I'm six months pregnant) every day for over two years now.
I had another CT scan last week to see if it's still there... seeing the consultant again next Tuesday.
If MP still present, I'd like to find a consultant who specialises in this condition. I'm based in the UK but will travel. Can you recommend anyone? Thank you!

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