Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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?

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???

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.

Hi, Been in here before. Diagnosed 8 yr ago. Seen all types of Doctors. Tried every med and treatments. The only thing that works is prednisone. In 4-6 hours I am normal. But have to know how to use it. For me my gastro gave me a 2 week taper starting with 25 mg. I had to go to 37 sometime. But symtoms always returned after 2 or 3 weeks. Now just use bursts of 12 mg for 2 days or alternate days and fine for a couple of weeks or months. Longer than 5 days on prednisone seems to give depression for me.

A hot pack on the abdomen for 20 mins can get me up and about also. Its nothing to do with any type of food. Its when food starts moving along inflamed sensitive tract. About 15 mins or 30 mins after eating. Sometimes after the first bite. Maybe because intestines start actions straight away. Walking is great also. Its manageable. I have my life back. Hope this helps. Murray

Well I'm glad to talk to others after constantly searching to see if what I feel is normal for people diagnosed with sclerosing mesenteritis. I have lived with discomfort and pain most of my life due to infertility issues for over 18 years and that was 25 years ago and had many abdominal surgeries. My last 3 cat scans over last 3-4 years and visits to various qualified doctors including ruling out lymphoma at this point with an oncologist point to this diagnosis. My symptoms are as follows. I feel gas and bowel moving from place to place along with ripping sensations alot, sometimes a pain that takes my breath away although it dosen't last too long. Serious cramping at different times, of course bloating. I do get mid thoracic discomfort that I always thought was an old ski injury, however now that it's in the problem area, maybe it's related. Anyway it would be nice to talk to people that might have these symptoms so I know it's within normal limits. I am active and almost 70 🙂 No meds used as of yet. 🙂