Mesenteric Panniculitis or Sclerosing Mesenteritis
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!!
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I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare
Hello, I’m mark from NC. I was diagnosed with S/m in 2010. Biopsy confirmed, mass the size of a fist that goes from the front to my back which explains the pains in the front, sides and back! Have been on all treatments that most every one has with no relief. I had to quit my job of 35 years because I couldn’t function anymore. I’m currently on fentynal patches and hydrocodone. It helps soom. It inoperable and seems to be getting worse. It’s very depressing as I have no job or life and the outlook is pretty dim. I’m giving up hope!:-(
Bill, good luck with this disease. I 56, diagnosed in 2010 with s/m. Have tried all the drugs that most every one gets treated with but known worked for me! I’m on pain management using fentanayl patches and taking hi dosages of hydrocodone for pain. I had to quite my longtime job in 2012 because I couldn’t function. My life has completely changed because most of my days I’m either in bed or recliner with a heating pad!! I’m so depressed that I don’t know what I’m going to do! I have filed for SSD but got turned down the first 2 times, now waiting on a hearing date. I do hope you do okay!! Good luck
Hi Bill. I live in Australia and was diagnosed 5 yrs ago. I have severe attacks every 6 months. Treated with 40g Prednisolone reducing by 5g every 5 days. Also high doses of Oxycodone for pain. I am learning to live with this but there is not much info out there about future problems if any. No ongoing diseases but history of stomach surgery which seems to have some relevance from what I have researched. Hope this helps.
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.
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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Been recently diagnose with meseteric panniculitis 2 months ago been dealing with it since Oct 2013.looking for input,
Thank you, my case is unique as they put it, I have been experience the severe abdominal pain, back pain just recently, nausea, vomiting, fatigue, inflammation of the joints. They still haven’t figure out what is contributing to the mesenteric.
Again thank you on the website been helpful.
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?
Hi @angel11. I’m sorry to hear about your recent diagnosis. Here is some information on sclerosing mesenteries, also known as mesenteric panniculitis, that might be helpful for you: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/basics/definition/con-20037148