1. < Digestive Health

Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @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

Interested in more discussions like this? Go to the Digestive Health Support Group.

PCfromFM | @pcfromfm | Jan 18, 2018

Morning @pacemonie. It is difficult to find a Doctor who is into this rare disease. What area of what country do you live in? Maybe someone can help direct you. We all have had different experiences but know this pain for sure. Sending good thoughts!

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pacemonie | @pacemonie | Jan 18, 2018

I live in Vancouver, WA which is just a few miles from Portland, OR...I would appreciate any ideas on Doctors out this way. I am wondering if an anti inflammatory diet may help? I am at a point where I can't take anymore pain. I had a pain shot yesterday that didn't give me much relief.

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pacemonie | @pacemonie | Jan 18, 2018
In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)
@k2aunt

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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My naturopathic doctor suggested the Inspirstar, which she programmed...it just has 4 electrodes I place near the pain and run it through its cycle. It did take a prescription to get that type.

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kimh | @kimh | Jan 19, 2018
In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)
@k2aunt

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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Thanks! I will update everyone after Monday regarding my appointment with the naturopath. Tonight, I am going to try to take a sauna. I have read that sauna heat helps reduce inflammation. I have also heard the same about Brazilian nuts....

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Von, Alumni Mentor | @vdouglas | Jan 20, 2018

Hello @pacemonie
Sorry to hear you are dealing with the pain associated with MP. As far as doctors go the best for diagnosis and prognosis are at the Mayo Clinic in Rochester Mn. The reason I say this is because they know what they are looking at on a CT scan. Most doctors will only see the haziness or mass and not know what they are looking at. Most doctors will not know how far the disease has progressed. The Mayo Clinic Gastroenterology team will know how to interpret the CT and be able to recommend the best treatment. I say this based upon my personal experience.

That being said, once diagnosed typically you would be started on prednisone to help with the inflammation which will subsequently relieve the pain. If the pain is manageable it's quite possible just mild pain medication would help. If you were seeing a "helpful Gastroenterologist", meaning one that is willing to study the disease and treatment, this is the treatment most likely to occur.

We know what you are going through and wish you the best.
@vdouglas

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Scott T @ Skywave | @skywave | Jan 23, 2018
In reply to @billindc "Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore..." + (show)
@billindc

Looking for the best place to seek treatment for mesenteric panniculitis in the DC or Baltimore area. Recently diagnosed after 3 abdominal CTs in the last 10 months and ER trips due to nausea and abdominal pain and bloating. My primary doc is at a loss, local GI docs tell me they have only read about the disorder. Need a more experienced doctor. Thanks for any help. Once I stopped my prednisone, symptoms returned. I also have ankylosing spondylitis and had gallbladder removed years ago. Has anyone also had headache and dizziness/light-headedness with this? So glad to find this group, thanks. ~Bill

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Hello, I was diagnosed with MP in 2015 and having some very bad affects from post acute MP. I'm 54yo male in New Hampshire that is having a very poor time finding any medical professionals that know how to treat.

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Scott T @ Skywave | @skywave | Jan 23, 2018

I'm a 54yo male diagnosed with MP in 2015 and 2016, with health problems post acute MP. I live in NH. Having hard time finding medical professionals who know how to treat MP. I'm current condition is in a weaken state with poor B12 and iron. Unable to raise either by supplements which cause severe bloating and pain or diet. It's taking a toll on a normal life.

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1 reply
Von, Alumni Mentor | @vdouglas | Jan 24, 2018

Hello @skywave ,

Welcome to the Mayo Clinic Connect. I'm glad you found this site and I hope it can be helpful to you. Sorry to hear you are struggling with some unpleasant symptoms. One of the main difficulties with Mesenteric Panniculitis is finding doctors who are familiar with the disease. I don't know that the bloating and low B12/iron are caused by MP but the bloating is a common symptom.

I have been to the Rochester Mayo Clinic and I can attest that the Gastroenterology staff are familiar with this disease and it's progression. The treatment for MP is limited and there is no cure but it is treatable and it is very reassuring to know how it is affecting your Mesentery and to know whether your symptoms are being caused by the MP or something else. Although I was not having symptoms when I visited the Rochester Mayo Clinic, I found out everything I needed to know. The doctor actually went over my CT scans with me and explained everything he was looking at. This is the first time a doctor actually looked at my CT scans other than at the ER. My local doctors read the CT written report and that was it.

I have borrowed the following paragraph from one of our Moderators ( @kanaazpereira ) as I think she says it so well: "If it gives you any reassurance, I’d like to mention that Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2017-2018 by U.S. News & World Report. If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here": http://www.mayoclinic.org/appointments

Can you tolerate Prednisone? This is usually the first line of defense once diagnosed with symptoms. Please see attached information: http://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/sclerosing-mesenteritis-care-at-mayo-clinic/ovc-20322161

Looking forward to your response and best wishes to you.
@vdouglas

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1 reply
PCfromFM | @pcfromfm | Jan 24, 2018
In reply to @skywave "I'm a 54yo male diagnosed with MP in 2015 and 2016, with health problems post acute..." + (show)
@skywave

I'm a 54yo male diagnosed with MP in 2015 and 2016, with health problems post acute MP. I live in NH. Having hard time finding medical professionals who know how to treat MP. I'm current condition is in a weaken state with poor B12 and iron. Unable to raise either by supplements which cause severe bloating and pain or diet. It's taking a toll on a normal life.

Jump to this post

Welcome@skywave to our group. You share a common problem, with this rare disease. We are from around the world and yet can connect on a good level with crazy symptoms, possible causes and a plethora of bits to help. We understand your worry, your concerns and frustrations. We share them all. I have found there is always someone who can relate and thus help to start progress to better health. Suggestions above from @vdouglas as a perfect example. I have taken solice in the idea of at least we are in this with an understanding group. Welcome!

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ricklaff51 | @ricklaff51 | Feb 26, 2018
In reply to @shareie "I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er..." + (show)
@shareie

I am in pain and in the er every 2 months..... moraphine,Nausea rx, prednisone...given at er t hen continue prednisone 5 days...I'm auto immune , still trying to figure out what involves and no one Dr wise can answer any questions...my intestines swell and I hurt base d during attacks which last until I get prednisone etc.....I am tired of routine uncontrollable routine I have every two months....what's your advice and is this similarity to anyone? Have Been told my condition is very rare

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Do you still have the support group? thank you!

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