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.

steve_b | @steve_b | Aug 31, 2018

Hi, new here, just had my annual MRCP/MRI to rule out recurrence of IPMN (intraductal pancreatic mucinous neoplasm) and a new young radiologist identified what he said is mostly likely chronic mesenteric panniculitis. He can identify it in retrospect going back 6 years on scans. All this time my GI doc has been saying my pain was due to chronic pancreatitis. I've had a few surgeries, prostatectomy, cholecystectomy, distal pancreatectomy, splenectomy. I'm here looking for treatment options, doctor recommendations on the west coast and support.

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steve_b | @steve_b | Aug 31, 2018
In reply to @vdouglas "Hello @skywave , Welcome to the Mayo Clinic Connect. I'm glad you found this site and..." + (show)
@vdouglas

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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Hi Von, I'm a newbie here and newly diagnosed but have a long history of abdominal surgeries. I'm located in Reno and read that you are in Vegas. Have you found a doc there that is knowledgeable in MP? I can't get treatment here but could jump on a plane if there is a doc you can recommend in Vegas

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paulalee | @paulalee | Sep 2, 2018

My CT showed MP with lymph nodes. Does anyone know what the doctors will do for me?

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steve_b | @steve_b | Sep 2, 2018
In reply to @jarnold246 "Can anyone tell me if having an EUS with possible ERCP is a standard test for..." + (show)
@jarnold246

Can anyone tell me if having an EUS with possible ERCP is a standard test for MP/SM? I went to a GI doc for the first time on Tuesday and he wants to perform this test. Can anyone tell me if they have had this type of study for the diagnosis?

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Hi J, From what I've read neither EUS nor colonoscopy can see or diagnose MP. Personally I've had 6 EUS in the last 10 years, some with ERCP and they never mentioned seeing MP. But just last week on my annual MRI a new radiologist noticed the MP and also said he could see it on scans (MRI or CT) going back at least 6 years. Your doc probably wants to rule out pancreatitis, stones, etc.

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1 reply
paulalee | @paulalee | Sep 2, 2018
In reply to @steve_b "Hi J, From what I've read neither EUS nor colonoscopy can see or diagnose MP. Personally..." + (show)
@steve_b

Hi J, From what I've read neither EUS nor colonoscopy can see or diagnose MP. Personally I've had 6 EUS in the last 10 years, some with ERCP and they never mentioned seeing MP. But just last week on my annual MRI a new radiologist noticed the MP and also said he could see it on scans (MRI or CT) going back at least 6 years. Your doc probably wants to rule out pancreatitis, stones, etc.

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Thank you. Forgive my ignorance but what is a eus?

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1 reply
jarnold246 | @jarnold246 | Sep 2, 2018
In reply to @paulalee "Thank you. Forgive my ignorance but what is a eus?" + (show)
@paulalee

Thank you. Forgive my ignorance but what is a eus?

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Thanks Steve. I'm in the medical field, formerly an MRI tech and I never heard of mp, but have done plenty of mesentary scans. Im sure that is what the doc is looking for, stones etc.... I just hate the vagueness when some docs talk to you,but usually that seems to come when they don't quite know what is going on rather than saying they don't really know.

@paulalee EUS is an endoscopic ultrasound. I'm sorry I should have explained that in my post.

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1 reply
paulalee | @paulalee | Sep 2, 2018
In reply to @jarnold246 "Thanks Steve. I'm in the medical field, formerly an MRI tech and I never heard of..." + (show)
@jarnold246

Thanks Steve. I'm in the medical field, formerly an MRI tech and I never heard of mp, but have done plenty of mesentary scans. Im sure that is what the doc is looking for, stones etc.... I just hate the vagueness when some docs talk to you,but usually that seems to come when they don't quite know what is going on rather than saying they don't really know.

@paulalee EUS is an endoscopic ultrasound. I'm sorry I should have explained that in my post.

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Thanks again, I'm new to all this and a bit scared.

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jaimeworth89 | @jaimeworth89 | Sep 11, 2018

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

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3 replies
kimh | @kimh | Sep 12, 2018
In reply to @jaimeworth89 "Hello Everyone! I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal..." + (show)
@jaimeworth89

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

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Hi Jaime,
I want to say welcome, but I understand how frustrated you must be. We all do. In my experience, steroids (though I hate the side effects) seem to help with the symptoms of MP. I have also been taking Tamoxifen alongside the Prednisone. I think once most people reach remission, they don't fall back out. I'm one of those 'other' cases who has fallen out of remission and have been battling symptoms for over a year now. My GI is weaning me off of Prednisone and if my symptoms persist (I feel like I am relapsing since weaning down with all typical symptoms returning....), we will be looking at immuno-suppressant medications. It's frustrating that there seems to be no further advances to help us! Through this site (and I'm sorry that I have forgotten who wrote the post!), I read a great book on how to deal with chronic illness called "How to be Sick" by Toni Bernhard. To answer your question about a second opinion, I have discovered that most people in the medical field don't know anything about this disease. I can tell you that from my experience, MP does not go away. I ended up being diagnosed through surgical biopsy, only to rule out lymphoma because my inflammations grew during the week that I was hospitalised. To answer your other question regarding autoimmune diseases, yes I blame my mother (she has ITP) entirely lol!! I also have hypothyroidism and typically welcome weight loss, but as you stated, not in this way. I hope this helps....

REPLY
Doron | @doron | Sep 12, 2018
In reply to @jaimeworth89 "Hello Everyone! I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal..." + (show)
@jaimeworth89

Hello Everyone!

I was just diagnosed with Mesenteric Panniculitis last week. I had been having abdominal pain also with other symptoms the past 8 weeks that had been worseing over time. I had gone to my PCP and also my G.I. and I didn't feel they were listening to me. They kept talking about my acid reflux even though mine has been well controlled for several years now. I ended up going to the ER and had a CT scan which confirmed the diagnosis. I have since showed the findings to my GI doctor, and he is now taking things more seriously. I'm still pending the results of my blood work that's testing my inflammatory markers. Currently my doctor wants to wait the next 4-6 weeks to see if it will magcially go away on it's own. Will repeat the CT scan at that time, and will most likely do a biopsy. I've been inm so much pain and I'm hardly eating right now. I have lost 10 lbs in a little under a week. Don't get me wrong the wightloss is a good thing, but not in this scenario. My GI wants to hold off on steroids for the time being and has given me Tramadol, Librax, and Hyoscyamine Sulfate to see if it will help with the abdominal pain. A little back story on me, I have Celiacs Disease and my mother was recently diagnosed with RA. From what I've read, people with auto immune disorders in their family can mean you have a higher liklihood of contracting MP. I feel like I need to vent since I'm pretty worried. Based on what I've described, does this sound like a good medical plan for the illness or should I seek a second opinion with another doctor? I'm only 29, and not sure how many other people in my age group have been doagnosed with this.

Jump to this post

HI there,

I don't know if my reply was sent because I wasn't logged in, but here it is again just in case:

Hi there,

I had acid refux for years and then got the auto immune version of the MP. I suffered tremendously until I started the Paleo Auto immune protocol diet and then started taking supplements for auto immune as recommended by Chris Kresser (http://my.chriskresser.com/the-supplement-guide/). The probiotic recommended is no longer available, but Dr. Mark Hyman from the cleveland clinic has some recommendations. Initially, I added ginger root extract, and grapefruit seed extract. I am a western medicine kind of guy, but didn't want to take all the steroids that my doctors recommended. Not only did my pain associated with Pannicultis go away, I also no longer had acid reflux after about 7 years or so. I now cheat regularly until I have signs that I need to go back on the diet, but I was diligent for 6 weeks, and then slowly added foods to see what affects me. I also had high triglycerides, and elevated liver enzymes and inflammation markers. All of these issues resolved themselves with the diet. Good luck and stay positive.

take care, Doron

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