Hello @kimh, Welcome to Mayo Clinic Connect. We are a group of patients and caring individuals that want to help each other with the issues that we have dealt with and are currently dealing with. The Mayo Clinic has one of the best teams of Gastroenteriologist in the world.
I hope all is well with you and wonder if you can tell us a little bit about what brings you to the Mayo Clinic Connect.
Von @vdouglas

I have just been diagnosed (from keyhole biopsy) with Mesenteric Panniculitus. I think the Specialists thought I may have had Lymphoma, but no. I have had symptoms of pain in my stomach for over twelve months and when I work too hard in the garden get very sore and tired. Occasionally I also get stomach cramps. It has been suggested that I take steroids (P) and tamoxifen, but haven't started yet. I am a bit apprehensive as I've never taken many tables in my life. I'm a 65 year old woman.

Hi Jolie D,
I can certainly understand your hesitation about taking Prednisone (steriods). I was hesitant, too. But I took them for three months and felt much better. There were a few side effects, but nothing really serious. If you are really concerned, you can get a second opinion. A lot of us on this site have taken Prednisone. If someone else would like to tell Jolie how they felt when taking Prednisone, feel free to chime in. You'll get a lot of support here. Good luck to you.
Bertbiz

Hi all,
Prednisone took care of the pain and inflammations (I was on it for 6 months) which is the most important point. My side effects were many however. My hair became dry and brittle, I grew facial hair, gained about 40 lbs. (I also have hypothyroidism) and now have osteopenia. But honestly, within about 10 days, I would say that my pain had subsided substantially. I hope this helps.

Hi Von,
I guess what mainly brings me here is the need to speak with others who 'get it'. Also, I am very interested if there have been any advances made since my last flare up (April, 2014).

On March 19, 2014 (the date is cemented in my brain!), I had a very bad fall on black ice. Within two weeks, I was in the hospital with severe abdominal pains. Originally, the emergency doctors thought that I may have had kidney stones which were shattered by the fall and causing the pains. After a CT scan, it was determined (like so many others here) that I have MP or lymphoma. By June, I ended up hospitalized and was told that I had many inflammations and that one specific one was larger than a quarter and had grown from one CT scan to another. After undergoing surgical biopsy, it was determined that I did not have lymphoma (thankfully!), but that I did have MP. I was immediately put on prednisone and torredol for pain. I was 49 at the time. I ended up taking prednisone until mid November of 2014 and was taken off because I began experiencing esophageal spasms (which I feel a heart attack might feel like!) Again, I was hospitalized for another 10 days for pain management and to rule out any heart issues.

Beginning in August this year, I started feeling the MP symptoms return, but because I was going through a lot at the time (my father had recently been diagnosed with cancer and I had just thrown a wedding for my son, house renovations, overseas relatives staying with us etc.) many people thought it was stress and anxiety. My GP did put me on a short therapy of prednisone in the hopes that we had caught it early. I was on 40 mg. of pred for three days, 35 for three days etc. until I was weaned off. I began feeling better, but three weeks ago, the symptoms have come back with a vengeance. I will be seeing my specialist next Friday and was hoping that there would be some advances made in therapy options since 2014. Sometimes I feel like this is a lonely illness because of it's rarity and the fact that there is not a lot of information 'out there'. I do want to mention that I am quite lucky in that I have a very kind and supportive family for sure...
Sorry for writing so much...

Morning @kimh this is a fairly quiet group but we are here! Please don’t be sorry about talking. No matter what your concern-just talking to us helps us all be brave enough to talk more and thus be more supportive. Our stories may vary but knowing there are others who share this crazy illness and you aren’t alone -is good. Not many understand this pain, the frustrations and concern that goes hand in hand with mp. For many of us it’s a day to day struggle, for sum it’s a sudden eposodic event. But for many it’s a way of living that finally has a name and we finally know others are in this with us. A number of different attempts to “make it better” work for a variety of “us” but bottom line: anything that helps even periodically is welcome! I work hard to keep my stress and worry low, watch my diet carefully and to regognise the inflammation signs growing and do what I can to help that. For me, it will all come back again at some point, always does-but now we have more research, some doctors who are into our illness and a couple of internet groups who help to remind us we are not alone and our pain is understood. Every kind of support helps. Keep the faith-thanks for talking!❤️

lol communication has never been a problem for me, as you may have guessed! Can I ask if you are on an anti-inflammatory diet?

No -well it is for me! I have tried many “diets” and have put together what seems to work for me. (Although it does change-like life itself-whether you want it to or expect it to —or not!) I eat little to no processed foods, or “fake” food , no gmo, no chemicals. (As much as possible) so it’s just home cooking for me or very carefully chosen restaurants. Can’t eat any form of onions or corn. ( no powdered, no starches etc) can’t do nuts generally, no hot spices, no seafood or fish little to no milk. Smaller amounts of meats and cheeses, no hops, malt, alcohol and little salt. Yikes-think that’s close to eat. Coffee gives me problems but I love it so and thus -a downfall! And you, my friend-what works for you?

Welcome to Connect, @jolied; we are so glad you've joined us. @bertbiz has also shared some valuable insight, as always – thank you, bertbiz. I think most of us would do without meds if given the option, but sometimes they are necessary.

Hormone treatments such as tamoxifen slow the growth of scar tissue. Tamoxifen (Soltamox) is typically combined with corticosteroids or other medications and may be used long term.https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

Although it's in a another group on Connect, you may also wish to view this discussion about Tamoxifen:
– Tamoxifen use after 5 years https://connect.mayoclinic.org/discussion/tamoxifen-use-after-5-years/

@jolied, may I ask what concerns you most about taking the medication? Have you asked the doctor about any long-term side effects?

Hi, kms. No not on an antinflammatory diet, probably need to think about that and look one up. Are you.?