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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: 13 hours ago | Replies (1474)

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@camih00

Hi Bill. While you wait for some conversation to build here, I thought I’d share a Mayo Clinic patient story that might be of interest to you: http://www.mayoclinic.org/patientstories/story-441.html

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Replies to "Hi Bill. While you wait for some conversation to build here, I thought I'd share a..."

Thanks Camila. Very interesting. The story said her mass was the size of a quarter. The doctors told me mine was 8cm wide and long. Prednisone was what I used and now the mass is all gone. They take a new MR every 6 months or so to monitor. So for now, just keeping my fingers crossed!

How long did you have to be on steroids?

I was on steroids for almost 18 months. 1 month at 40mg. Then I tapered back down to 20mg over 2 months. Stayed at 20mg for another 2 months. Then tapered to 0 over 9 months. As I tapered, the pain came back, and I thought I was relapsing. Turns out it was just secondary pain from the trauma, not the autoimmune. I used very small dosed of Lorazepam about once every 2 weeks to help with the pain and to calm me down. Basically, it was like taking a nice glass of wine. And it seemed to work every time! It took another 18 months for me to recover from the pred, and get my energy levels back to normal.

It was a long slog but I am doing well now and savoring every day!!

Great story on Carol. We have a private group as well with 177 members in it all with SM / MP internationally so all your medical, symptoms, meds, etc. aren’t public, etc. and also pairing people up with other’s in their states and/or countries for help with finding docs/facilities to treat SM or MP. Mayo and Dr. Eli at Northshore see the most with SM/MP. 🙂 My name is Lisa Schwart in Tulsa OK on FB if you want to contact me for any more info and adding you over to it! 🙂 Thx! This is a great page as well! 🙂 Lisa

Hi Bill! Welcome! I was diagnosed at 55 after many years of extreme symptoms. The team of doctors at a University Hospital told me I may have had this since I was eight -experiencing hypothermia then, although auto immune issues definitely run in my family. I have 3-6 “episodes” a year, when I was younger many more and a few years it was constant. I have learned what I can eat and do. Stress and lack of sleep or rest being a major factors. A positive attitude essential and constant awareness of what you need to do to feel as best as you can. When episodic medical help almost always essential. Finding your triggers is so important. I’ve done the elimination diet several times with much success. Best of luck and health! Ask any questions you need to!