Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

I was diagnosed with Mesenteric Panniculitis around 5 weeks ago. Previously, I had been diagnosed with fibromyalgia. None of the treatments helped and had been living with intense back and lower joint pain daily. Before this I lived with Gallbladder disease for over a decade before they removed it. They removed my appendix before they removed the gallbladder. After they finally removed the gallbladder I soon realized I was continuing to have similar stomach pain, but they never found anything. This last time they did a CT scan with contrast and diagnosed me with MP. My GP started me on a prednisone taper and all the horrible “fibromyalgia pain” I’ve been crippled with for years was magically gone. Unfortunately, stepping down in mg on the taper it has all suddenly returned. Because MP is so rare my GP doesn’t know who to send me to. He referred my to a gastroenterologist and a rheumatologist, but admitted they might not know anything about MP. Because the prednisone alleviated my intense back, hip, knee, ankle, and muscle pain, both my chiropractor and the doctor I get TP injections from have mentioned the pain must be caused by systemic inflammation. I have read that MP can do this, but I feel like I have to convince my GP. He actually said to me that MP is very rare and most patients have no symptoms. Like I shouldn’t be attributing my mysterious inflammatory symptoms to the inflammatory disease I was just diagnosed with because most patients are asymptomatic. He also went over how I was diagnosed and did confirm it was done correctly, but has still failed to update my chart with the diagnoses even though he is treating me for it. Being such a rare disease, I feel like I’m fighting an uphill battle with my doctor because he just doesn’t know enough about it and isn’t confident. He would prefer to send me to a specialist, but has no idea who. I don’t know if this information helps anyone, or at least validates their symptoms. If you have symptomatic MP, best of luck.

@lisas444 Hi Lisa does this group still exist?

@mmusler - it sure does, and welcome. Do you have a diagnosis of mesenteric panniculitis?

@ginachase2002
ref. Mesenteric Panniculitis ...........suffered from symptoms for 10 years..doctor sent me for stomach ultra sound for 5 years ......during this time had numerous CT scans related to kidney stones ......My own review of CT scan results show Mesenteric Panniculitis since 2017.......... ... never discussed ! Last year I had surgery to remove a tumor from my colon.... it was a disaster ......Surgeon had to change to open surgery during my op!.....his report blamed the inflammation caused by Mesenteric Panniculitis!..........12 MONTHS ON........... CHRONIC CONSTIPATION AND NARROW INTESTINE WITH STRICTURE!........ UNRESOLVED!

...........the inflammation caused by Mesenteric Panniculitis!... UNRESOLVED!

@lisalucier Oh great, thank you! And yes, most unfortunately, I do. I was diagnosed in 2024, but there were hints on scans as early as 2016. I also have MS, so my journey has been very frustrating because things have been blamed on MS that were likely MP-related. I'd love to connect.

@aksandralynn Hi, I also have a MP diagnosis and active daily abdominal symptoms. I'm wondering about the visceral massage you're doing. Was that something you chose to do on your own, or were you directed to by a doctor? I ask because the inflammation I have is causing several new hernias from old surgeries, and I've wondered about gentle massage to kind of move things around in there and potentially alleviate that issue, but I've also been afraid to make it worse. I'm very curious about your experience! BTW, I did 2 rounds of Prednisone last fall and winter and they also made me feel better in terms of energy level temporarily but it was back to my MP normal after I stopped.

@sqindy
I am just seeing your comment and I am so sorry I haven’t acknowledged it until now. I am definately a real person. No AI in me. Mayo Clinic Connect is all real people, a safe place for you to, well….connect.

The link I provided earlier states, “ Asymptomatic patients do not require treatment. For patients with pronounced symptoms or complicated SM, the combination of tamoxifen 10 mg twice daily and prednisone 40 mg daily is the first-line pharmacotherapy; no randomized controlled trial of this regimen has been performed. Rarely, surgery may be necessary in cases of persistent bowel obstruction refractory to medical management. Sclerosing mesenteritis has an overall benign course in most cases”

You said you had asked for testing because you had symptoms, so that would leave you out of the ‘asymptomatic’ group. I am not sure if you would be considered having pronounced symptoms or not. (I am not a medically trained person). Regardless, it does sound like you have good treatment options. It may help for you to write down your questions and have a good conversation with your doctor or someone on his team.

You mention your doctor ordering nuclear scans and MRI’s following your recent diagnosis. What have you learned? How are you feeling?

@mmusler
Hello and so sorry for a delayed response. A friend shared about visceral massage and I did some reading and it seemed to be something helpful for some. I had about three weeks of massage before going to see the doctor at Mayo. I was also on the prednisone, so I cannot say if the massage was helpful on its own or if it was the steroid making me feel a bit better. I will say though the 1 hour massage twice a week was in itself relaxing and since stress seems to be a contributing factor with MP, I felt I couldn't go wrong. I did not have any stomach issues having the massage. Just make sure it's a light massage and don't get anyone who is trying to work over your stomach like a sports massage :-).
I'm frustrated with this condition and still don't have any answers. 🙁

@jlharsh thank you, my name is Aaron. Yes, I noticed bad swelling of the “upper abdomen” and asked about a scan. 1st it was a CT scan, found (misty “inflammation” substance) of some sort in the stomach area? Then I had a nuclear scan (gallbladder was 99 “abnormal” they said?) then ultrasound and said (you have fatty liver?) we need a liver scan “that is on Monday”2-9-2026 they will look over all the tests and tell me the findings on 2-11-2026. So far I have no answers? I am scared it is really bad, then at times I think it will be bad, I have no idea? Just waiting to find out what the doctor’s come up with? I want to plan for a “future, but may be a funeral instead”? The not knowing is difficult.

POSED THIS EARLIER.....anyone had /have similar?.....any suggestions?
MUCH APPRECIATED!
ref. Mesenteric Panniculitis ...........suffered from symptoms for 10 years..doctor sent me for stomach ultra sound for 5 years ......during this time had numerous CT scans related to kidney stones ......My own review of CT scan results show Mesenteric Panniculitis since 2017.......... ... never discussed ! Last year I had surgery to remove a tumor from my colon.... it was a disaster ......Surgeon had to change to open surgery during my op!.....his report blamed the inflammation caused by Mesenteric Panniculitis!..........12 MONTHS ON........... CHRONIC CONSTIPATION AND NARROW INTESTINE WITH STRICTURE!........ UNRESOLVED!

...........the inflammation caused by Mesenteric Panniculitis!... UNRESOLVED!