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

I’m new to the board, so here is my story…I’ve been struggling with acid reflux since Aug 2011 and my doctor was running out of treatment options so he ordered a CT. The CT showed Sclerosing Mesenteritis and also found out that I had slow gastric emptying aka Gastroparesis. Just heard yesterday that I have igG4 labs that are elevated to 163. I have suspected that I may have acquired H Pylori in 2011 but I have been tested 3 times and they were all negative. I’m also having MRI about every six months to monitor the condition and check for lymphoma, etc, so far so good. Anyone have elevated igG4 levels or share similar combination of diagnosis?

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@camih00

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

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How long did you have to be on steroids?

Liked by ladycat

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I am very interested in joining your group. I just had a CT scan that showed this disease. After three months of awful pain and nausea…losing 25 pounds and having many tests…I might finally gave a diagnosis.

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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How do I join the support group?

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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peggy, please Private message me. we have over 80 people now 🙂 look foeward to heaing from you 

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Hard to believe it has already been three years since I posted this first comment in an effort to connect others out there with this terrible disease to help each other.

I have found this group tough to follow at times, as I worked through my own issues. Hardest part for me was getting off prednisone. I ended up taking it for ~18 months. It took another 18 months for me to begin to feel like my old self again.

But I think my story so far has been very fortunate. No relapse yet and hope that takes a long time to happen. I have been hesitant to add this, even though it is positive, because I know others are still struggling with getting this into remission and keeping it there. My experience was so acute that one doctor speculated that it could go away just as fast as it came because it was so acute.

So all I can do is thank God for giving me the strength to march on and I pray for the rest of you to likewise find the strength you need to persevere and all get healthy again.

Thanks to LS4 for leading the charge on creating a support group. I trust that those that participate find it meaningful and helpful!!

My wife recently began working at 23andme.com. They are working with pharma companies to help find cures for corner case diseases. The big issue for them has always been getting a patient population for study and test. 23andme helps them do that, dramatically reducing the costs of research. Let’s hope this innovative approach to genetic testing finds its way to our group one of these days!!

Best to all of you,

Bill

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@hardclose

I’m new to the board, so here is my story…I’ve been struggling with acid reflux since Aug 2011 and my doctor was running out of treatment options so he ordered a CT. The CT showed Sclerosing Mesenteritis and also found out that I had slow gastric emptying aka Gastroparesis. Just heard yesterday that I have igG4 labs that are elevated to 163. I have suspected that I may have acquired H Pylori in 2011 but I have been tested 3 times and they were all negative. I’m also having MRI about every six months to monitor the condition and check for lymphoma, etc, so far so good. Anyone have elevated igG4 levels or share similar combination of diagnosis?

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I do not recall anyone mentioning igG4 levels to me, but it has been 3 and half years.

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@amilhim

is there a cure for Mesenteric Panniculitis? someone I know has just been diagnosed with this disease after so many years of episodic abdominal pain and apparently wrong diagnosis. she is in her late seventies, is it normal at this age?

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When I went to Mayo, they told me I was the only one under 50 they had seen, and that while this is very rare, it is most common in 70+ individuals. But this is just hearsay on my part.

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@angel11

I was also just diagnosed with Mensenteric Panniculitis. I am 38, female with a history of abdominal pain and issues. Mine was also found accidently on a catscan with Iv Contrast. My doctor was also looking for an Inguinal Hernia that was found during a lapro procedure 4 years ago. I am very fatigued, wake up with hot red face, blood in stool, nausea, most of all, abdominal pain. My doctor started me on 40 mg of steroids and I am to see a GI specialist in a few days. Nothing ever showed in my bloodwork prior to the catscan. As this is such a rare condition, I am very concerned about underlying diseases. How do you even know what stage your in? What other conditions will they check for? Is this an auto immune disease?

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Erin – How goes your progress on this? Did you take steriods? Are you in remission?

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@jimmymac

My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

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I took a similar course of pred, but when I tapered to 20mg, they had me stay at that level for 3 months, before then working to come off all together, which took another 9 months.

Liked by ladycat

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@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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K2aunt – How are you doing now? Are you in remission? Or are you still dealing with flare ups?

Liked by ladycat

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@danrofohio

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.

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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

REPLY
@camih00

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

Jump to this post

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 TJ, ladycat

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@billymac65

Hard to believe it has already been three years since I posted this first comment in an effort to connect others out there with this terrible disease to help each other.

I have found this group tough to follow at times, as I worked through my own issues. Hardest part for me was getting off prednisone. I ended up taking it for ~18 months. It took another 18 months for me to begin to feel like my old self again.

But I think my story so far has been very fortunate. No relapse yet and hope that takes a long time to happen. I have been hesitant to add this, even though it is positive, because I know others are still struggling with getting this into remission and keeping it there. My experience was so acute that one doctor speculated that it could go away just as fast as it came because it was so acute.

So all I can do is thank God for giving me the strength to march on and I pray for the rest of you to likewise find the strength you need to persevere and all get healthy again.

Thanks to LS4 for leading the charge on creating a support group. I trust that those that participate find it meaningful and helpful!!

My wife recently began working at 23andme.com. They are working with pharma companies to help find cures for corner case diseases. The big issue for them has always been getting a patient population for study and test. 23andme helps them do that, dramatically reducing the costs of research. Let’s hope this innovative approach to genetic testing finds its way to our group one of these days!!

Best to all of you,

Bill

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hi billy. i think everyone here is in our group 🙂  wed love to have you if you like. I laugh that mayo would tell you that as my kiddo was 14 at diagnosis in 2008 and they know all about her, plus the other couple of kids. Our group even has a 17 month old diagnosed on up to 70 year olds and many in 30-40’s …  Feel free to Private message me.

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I am interested in joining the group. I have been sick for 3 months with pain and nausea. Mesenteric panniculitis showed up on. cT scan I just had….I have not had a follow up with a GI doctor yet…not sure where to go.

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