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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: 1 day ago | Replies (1422)

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@bakb

I too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

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Replies to "I too diagnosed 2011 with MP... have had flare ups often. When flare up occurs I..."

Hi bakb. We have a private Fb group if you’re interested with 340+ people all across the USA and multiple other countries. Would love to add you if interested. My contact info is in my profile here …My daughter diagnosed used with SM at Getting 14 and has 18 abd surgeries now from result if multiple bowel obstructions from sm. She’s now listing for small bowel and liver transplant due to it. (Loss of 100% colon and all of but approx 18″ small bowel. Been off/on TPN since 2008 and full time last three years. We have varying degrees of the disease in our group from mild to severe and unfortunately have lost five people in the last couple years with SM. Again, for anyone interested,please pm me or contact info on my personal profile. We have others near you could network you with for doc/facility info.

Lisa
Mom of great kiddo with SM diagnosed, age 14
#Rare Disease legislative advocate
#sclerosing Mesenteritis
#nord
#lifeofansmpatient

Please add me to your support group. I am 67 yrs, old with mesenteric panniculitis and I had triple negative breast cancer so they hesitate to put me on steroids because of the chance of the cancer returning, I am on probenecid/cochine and niot sure yet how it will work. Flare ups are miserable as you know. Thank you for any aid.

I was diagnosed in October 2016 with MP. I saw a GI late December that has several patients. She put me on Meloxicam daily. She has successfully treated other patients with it. I started taking it in the end of December. It took about 6 weeks before I could see a difference in my symptoms. It has really helped! If I stick to my diet, my flares are becoming rare.

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