Mesenteric Panniculitis or Sclerosing Mesenteritis

@waterboy Bill,

Good idea. Pharmacists are a great source of information regarding meds. We often don't think to check in with them when we have a question. I appreciate your reminding us of this important health care resource.

Tresa

A radiologist diagnosed me with MP in 2016 after a CT scan. 6 months later I had another CT scan and it was still the same diagnosis. For fear of having a million dollar work up and still no solutions I tried a different approach. I stopped seeing my GI doc and returned to my primary doctor with the idea that my symptoms seem to return with extreme prejudice when I’m stressed or suffering from anxiety. I asked my doctor about trying medication to control my anxiety or stress and I was prescribed a very small dose of generic Prozac. 10mg Just strong enough to take the edge off. It took a few weeks for the drug to work but eventually my MP symptoms which I refer to as “stomach spells” went away. I realize this might not be the answer for everyone. I can only tell you that I found relief from it. I ran out of Prozac last week and my stomach spells returned with a vengeance this evening right before I was to turn in for the night.
So I decided to post my results of the past 6 months online. I plan to return to my primary doc and continue with this approach. My hope is that I don’t develop a tolerance and eventually have to increase my Prozac dosage but coming from a background in Pharmaceuticals my guess is this will probably be the case eventually. Also I started drinking sparkling water for relief. Belching seems to keep my inflammation down and I grew tired, unhealthy and fat drinking sodas. Zero calorie, zero sweetener sparkling water. Exercising works also if you’re not too bloated or inflamed to actually work out. Make the time to exercise your brain and body will thank you. When all else fails I reach for my tum tum tum tums just like tonight. Find something to read online because it’s going to be a long night.

The deal is we have this issue that is rare and hasn’t been solved yet.
All we can do is treat or try and prevent the symptoms from returning until a cure is found.
I can only assume that my MP is A typical because my GI doc performed a scope and colonoscopy and found no evidence of Cancer, Lupus or anything else that could be underlying but only time will tell.
Wishing you all the best of luck learning to live with this. Should anyone have any other ways of treating their symptoms please share. Maybe your way will work for others including myself.

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

There is no underlying cause with my MP either, at least I hope not since they are more reluctant to follow any guidelines at my medical facility. Please excuse my non reply's to others if you did send me information regarding MP or wanted discussion. I was being bombarded with all auto immune disorders and it became a bad distraction when your phone and watch would light up a dozen times a day with non MP issues. All I can say is that I have a pretty good footing about what MP is. It is the problem with NE medical facilities that lack the caring for refined diagnosis and treatment. I can say without a doubt from Brighams Womans and Dana Farber that laxatives isn't the prime treatment for relief as this was what my so called specialist best guess solution.

Hello, To this date, I’ve taken no medication for MP. This isn’t my choice has I had developed a allergy to NSAIDS and steroids about 10 years back. I started to loose my vision if I took steroids, any kind of steroids. Your issue sounds like a dependency problem and feel for you. Your in a catch 22 where your damned either way. As you are the only one that can answer this, do you live better with this medication or without, and are your symptoms from MP causing you to require more prednisone to maintain a comfortable means of living?What I do know is that many cases, that there is a underlining issue in which MP has developed. If you haven’t had a CT and workup lately for MP, I’m talking more than 6 months, you may want to have another battery of testing to stay on top of this. There maybe other issues hiding under MP and I hate to say this, most are pretty bad.Like myself, I do not at this time have any underlining issues that I know of, but being a firefighter for 30 years I’ve been in contact with many bad stuff. This in itself has me worried and therefore I’m trying to stay at least one step ahead. I wish you best of luck and I will reply, as I’m trying to get the hang of this site. I was getting 20-30 emails a day about everything else but MP, so hopefully its getting straightened out. Scott Sent from Mail for Windows 10 

Thank you, yes very upsetting that there is no compass to steer us by for MP. Scott Sent from Mail for Windows 10 

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....

Hi, @skywave -- as long as you are not following the entire Autoimmune Diseases group, you won't be notified about all posts in that group. Your posting here in this MP thread has subscribed you to this discussion, and you'll keep getting notified about posts here.

Thanks for your contributions to this discussion on MP.

I wrote a previous post. I also had A-typical messenteric panniculitis symptoms in that I had pain from 2009 to 2016. Had exploratory at Mayo Clinic, Rochester, MN. Lymphoma was also expected finding but doctors were surprised to find a rare cancer, Carcinoid, in July 2016. I can not recommend Dr. Alexander enough. And Dr. Kellogg, Specialty Surgeon. I am currently in the waiting room of gastro oncology at Dana Farber, Boston, to oncology Dept recommended by Mayo team to follow me for the indicated ten years post surgery.

Hi There, It sounds you had the right doctor, I'm a couple of thousand miles away but I do need to ask a question about your Carcinoid. I've been diagnosed with MP since 2016, but and severe attacks from this since 2012. Did the doctor say where they located the carcinoid and your symptoms unless your symptoms were from MP? The reason why I'm asking is that doctors in Boston and in New Hampshire are clueless to what MP is. Most of what I've been reading is, many have had either lymphoma or tumor. So my own PCP doesn't believe in preventive care of MP and what it can lead to.