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BillyMac65
@billymac65

Posts: 14
Joined: Dec 06, 2012

Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by @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

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Hallemeier
@camih00

Posts: 4
Joined: Apr 04, 2013
Posted by @camih00, Dec 7, 2012

Hi Bill. While you wait for some conversation to build here, I thought I’d share a Mayo Clinic patient story that might be of interest to you: http://www.mayoclinic.org/patientstories/story-441.html


BillyMac65
@billymac65

Posts: 14
Joined: Dec 06, 2012
Posted by @billymac65, Dec 7, 2012

Thanks Camila. Very interesting. The story said her mass was the size of a quarter. The doctors told me mine was 8cm wide and long. Prednisone was what I used and now the mass is all gone. They take a new MR every 6 months or so to monitor. So for now, just keeping my fingers crossed!

Liked by ladycat


Peggyanne
@peggyanned

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Joined: Dec 28, 2014
Posted by @peggyanned, Feb 6, 2015

How long did you have to be on steroids?

Liked by ladycat


BillyMac65
@billymac65

Posts: 14
Joined: Dec 06, 2012
Posted by @billymac65, Feb 6, 2015

I was on steroids for almost 18 months. 1 month at 40mg. Then I tapered back down to 20mg over 2 months. Stayed at 20mg for another 2 months. Then tapered to 0 over 9 months. As I tapered, the pain came back, and I thought I was relapsing. Turns out it was just secondary pain from the trauma, not the autoimmune. I used very small dosed of Lorazepam about once every 2 weeks to help with the pain and to calm me down. Basically, it was like taking a nice glass of wine. And it seemed to work every time! It took another 18 months for me to recover from the pred, and get my energy levels back to normal.

It was a long slog but I am doing well now and savoring every day!!

Liked by ladycat, TJ

Posted by @lisas444, Nov 19, 2015

Great story on Carol. We have a private group as well with 177 members in it all with SM / MP internationally so all your medical, symptoms, meds, etc. aren’t public, etc. and also pairing people up with other’s in their states and/or countries for help with finding docs/facilities to treat SM or MP. Mayo and Dr. Eli at Northshore see the most with SM/MP. 🙂 My name is Lisa Schwart in Tulsa OK on FB if you want to contact me for any more info and adding you over to it! 🙂 Thx! This is a great page as well! 🙂 Lisa

Liked by ladycat, Weedy


Dot B
@dotb

Posts: 1
Joined: Dec 07, 2012
Posted by @dotb, Dec 7, 2012

Hi,
I am trying to find out more about mesenteric panniculitis. It was found incidentally on a CT scan where the doctor was looking for a ventral hermia. The doctor never brought it up during the appointment and then I requested a copy of my CT scan and read it. Any information would be helpful? What type of doctor should I follow up with. Thanks, Dot

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BillyMac65
@billymac65

Posts: 14
Joined: Dec 06, 2012
Posted by @billymac65, Dec 8, 2012

My doctor is a gastroenterologist. They seem to be the ones who specialize in this. I would start there.

Liked by Poppy73, ladycat


danrofohio
@danrofohio

Posts: 3
Joined: Dec 18, 2012
Posted by @danrofohio, Dec 18, 2012

Dot,

Thank you for starting this. Right now, I am very discouraged because of my experience with mesenteric panniculitis. I was diagnosed in March of 2011 when excruciating abdominal pain caused me to vomit repeatedly, and I went to the emergency room at my local hospital. I had been having pain from the panniculitis for months or years, but I just ignored it until it became unbearable. A the ER called in a surgeon, because they were afraid of an aortic aneurysm. He order a CT scan and whoever read that made the diagnosis which the surgeon confirmed with endoscopic surgery.

The surgeon treated me for the next three months by starting me on a course of prednisone (40mg for a month, then 30, etc.). After the first month, my symptoms were bearable, and a follow up CT scan showed the mass to be smaller. However, subsequent scans showed no improvement, and my symptoms did not improve either. So the surgeon said that I needed to go on to a research hospital, and I chose on four hours away because their rheumatology and GI departments were rated as one of the best in the country.

On my first visit to the research hospital, I saw a gastroentoligist and a rheumatologist separately. The GI wanted me to see an oncologist which I did, and the rheumatologist presecribed azathioprine (Immuran) while continuing the predinsone. The oncologist didn’t find anything, and after making some adjustments with a very slow taper off the prednisone, my symptoms when away. I was virtually symptom free for eight months and had hopes of being cured and being able to go off the azathioprine.

Then about six or so weeks ago, the the symptoms came back. At first they were mild and rare. Now they occur multiple times per day and are very painful. Meanwhile, I needed to prepare for my next follow up with the rheumatologist at the research hospital in January. I was supposed to call the oncologist and ask him if I should get another CT scan. I did that about four weeks ago and left a message with his admin assistant. The office never returned the call, so I called back about two weeks later, and the assistant said she was going to call me that day, because the oncologist wanted her to ask me if I had CT scan recently. When I told her no, she said she’d pass that information along to the doctor and get back to me in a day. That was almost two weeks ago.

I could call the rheumatologist, but I don’t think he really understands why the panniculits is a problem. Based on our previous discussions, I seriously doubt that he has any idea what else to do to treat this. (He had one previous patient with mesenteric panniculitis, whom he treated with azathioprine.)

I would appreciate any suggestions that anyone has.

Liked by Poppy73, ladycat


BillyMac65
@billymac65

Posts: 14
Joined: Dec 06, 2012
Posted by @billymac65, Dec 18, 2012

Have you tried to reach out to someone at the Mayo clinic? I went to the clinic in Rochester MN. These cases are rare (and as I know first hand, pretty scary). The team there seems very experienced and well versed with this. My doctor there was Dr. Glenn Alexander, but their is a great team, and I am sure any would be able to help you.

I am about 8 months or so behind you. I am finally off the pred. I have never taken Immuran. I feel as if I am waiting for the bomb to go off again at any time.

Hang in there but do whatever it takes to get the best help you can.


Bhamilton
@bhamilton

Posts: 3
Joined: Jan 19, 2013
Posted by @bhamilton, Jan 19, 2013

Hello, have you had any more information on this disease or any updates on treatments ??


danrofohio
@danrofohio

Posts: 3
Joined: Dec 18, 2012
Posted by @danrofohio, Jan 19, 2013

I have a semi-annual appointment scheduled at the research hospital next week. It will be very interesting to see if the doc has any ideas on how to treat the recurring symptoms.

Liked by ladycat, Bhamilton


Bhamilton
@bhamilton

Posts: 3
Joined: Jan 19, 2013
Posted by @bhamilton, Jan 19, 2013

Please keep in touch and let us know how it went and what you found out. Good luck 🙂


BillyMac65
@billymac65

Posts: 14
Joined: Dec 06, 2012
Posted by @billymac65, Feb 6, 2015

I just posted an update below. Mercifully, I have been off the pred for 2 plus years now and the bomb has not gone off again. I sure hope I am not jinxing myself!!

Liked by ladycat


Von, Volunteer Mentor
@vdouglas

Posts: 88
Joined: Mar 06, 2015
Posted by @vdouglas, Wed, Mar 22 12:13am

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k2aunt
@k2aunt

Posts: 1
Joined: May 14, 2013
Posted by @k2aunt, May 14, 2013

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn’t having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband’s endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn’t show anything to the naked eye since he couldn’t do a biopsy since I am currently on coumadin and didn’t come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn’t last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don’t mind dealing with pain but if i get a “flare-up” it hurts to the point i can’t do anything. Thanks for listening and any suggestions you might be able to provide.

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