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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

Posted by BillyMac65 @billymac65, Dec 6, 2012

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!!

Bill

Interested in more discussions like this? Go to the Digestive Health Support Group.

bevie24 | @bevie24 | Apr 3 2:01am
In reply to @serenaf "This is pretty much exactly my symptoms, diagnosis, and experience. After CT and PET scans and..." + (show)
@serenaf

This is pretty much exactly my symptoms, diagnosis, and experience. After CT and PET scans and colonoscopy and bloodwork to rule out lymphoma, my GI diagnosed Sclerosing Mesenteritis. She is recommending 40mg Prednisone for 6 months with 10mg Tamoxifen plus sulpha antibiotic, then 6-month taper. That seems like a long time to take such a high dose of prednisone, and I notice others on this thread started to taper after just a few weeks or a month. I am very curious what treatment you got, and what the results were?

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My Gastro offered similar medicine treatment which I am reluctant about it too. Have you started the meds?

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dciddio | @dciddio | Apr 3 12:00pm
In reply to @bevie24 "My diagnosis of Mesenteric Panniculitis confirmed by CT with contrast was a year ago- March 2024...." + (show)
@bevie24

My diagnosis of Mesenteric Panniculitis confirmed by CT with contrast was a year ago- March 2024. I’ve seen multiple providers and have had an exhaustive work up of testing. I’ve changed my diet, Fodmap, etc. Questions- has anyone tried Fodzyme digestive enzymes powder? ALSO, my Gastro Dr pushed on my abdomen and found tender areas when he had me lift my legs and hold them there (carnets sign?) He is sending me to pain management for abdominal trigger point injections. I’m hesitant. Anyone else try this???

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I have used Fodzyme for years. It does help with some troublesome foods so that I’ve been able to increase more higher fodmap foods. It is expensive and can be hard to distinguish how much is needed. Not a cure all, but with Pepto, Imodium and smaller meals, I have less pain and diarrhea. Entocort didn’t help.

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1 reply
bevie24 | @bevie24 | Apr 4 7:40am
In reply to @dciddio "I have used Fodzyme for years. It does help with some troublesome foods so that I’ve..." + (show)
@dciddio

I have used Fodzyme for years. It does help with some troublesome foods so that I’ve been able to increase more higher fodmap foods. It is expensive and can be hard to distinguish how much is needed. Not a cure all, but with Pepto, Imodium and smaller meals, I have less pain and diarrhea. Entocort didn’t help.

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I’ve had IBS-D all of my life. Since the symptoms and mesenteric Panniculitis diagnosis, I’ve had constipation and have to use miralax daily. I’m going to try the Fodzyme..

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