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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Oct 23 1:51pm | Replies (1398)

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@jimmymac

My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

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Replies to "My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI..."

You need to see a gastroenterologist and early medication with high dose of Prednisolone 40g. I take 40g or until pain goes then reduce dose by 5g every 5 days. If pain comes back need to go back and start again. I am in West Australia Perth and my specialist is Dr Sharon Masel at Mt Lawley St Annes Hospital. Hope this info helps.

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I took a similar course of pred, but when I tapered to 20mg, they had me stay at that level for 3 months, before then working to come off all together, which took another 9 months.

Hi i was just diagnosed with this disease.And i would like to learn more about it.Do you have any suggestions

My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.

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