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BillyMac65 (@billymac65)

Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: 2 days ago | Replies (1475)

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Hi @skywave,

I moved your post about finding informed practitioners for MP, and combined it with this existing discussion. I did this as I thought the other members in this group would also appreciate your insights.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the conversations by members discussing similar questions and concerns.

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Replies to "Hi @skywave, I moved your post about finding informed practitioners for MP, and combined it with..."

Thank you on your reply regarding MP. I was getting somewhat agitated when I was getting everything anybody was sending regarding auto immune. I've been this route before with MD's who think they need to just give me laxatives to manage MP. This was a Brigham's Woman and Dana Farber in Boston. This was after my blood panels were so out of norm I was sent to a lymphoma specialist for 6 months of blood and lab work.
This is how much help I've got since 2012 when my first onset attack happened. So what I'm looking for is just MO related issues and or treatment ideas from others patients whom are MP patients

I think that you'll find that we have been through ordeals, probably because of the rarity of this disease and therefore, lack of research. I have relapsed (during this latest relapse, unfortunately!) and am back up to 20 mg. of Prednisone daily. It's so frustrating! I have heard of thalidomide, colchicine and azathioprine as other options, but my GI seems to want to stay the course with Prednisone. As of August 18th, I will have been on Prednisone for a year and like you, would like to hear from others who may have had experience with different treatment options….

sorry to hear your relapse, I've had at least three since my first incident with MP, which I thought I had gall stones or the pancreas was acting up. I've had zero meds though due to my allergy to steroids and NSAIDS. My best wishes and stay tuned as I'm hoping to here more from others who suffer from MP.