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

@hopeful33250

@jarnold246 You have been through a lot. I hope you get the answers you need and begin to feel better at least. Many of us on Connect have had hard-to-diagnose health problems and have spent years trying to get an answer. When you finally get the answer it feels so good. Hang in there!

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Yes, and please share any knowledge that you learn! This site has helped me immensely when it comes to trying different medications (most of them, I had never even heard about before!).

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@pcfromfm

Morning all! Doctors agreed when I was diagnosed that I probably have had this since I was young. I had hypothermia as a young person and developed terrible gut issues after that. In and out of hospital at least 3 times a year. But auto immune diseases run in my family like crazy as well. I’m old now -turn 70 this year!-and I’ve learned to live a pretty full life with it, juggling factors that effect quality. But you are sure correct kimh- being diagnosed and knowing some of what this disease is all about – very comforting. Doctors kept telling me for years that if I would only leave a less stressful life I would be fine, if I stopped doing such and such then -. Took many years to end up finding out that it wasn’t in my head! 😊

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It's the worst, when you actually start questioning your sanity! Been there and done that too! I am still off work and my job is a pretty stressful one, so I don't know what will happen when my insurance (sick leave) runs out! Another stressor!! I have wondered if I wasn't born with this disease with the symptoms laying dormant until that big bad fall on black ice! BTW, 70 is a spring chicken!!!

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@musicflowers4u

These posts leave me to realize it’s possible for MP
To return probably even these three years post cancer surgery. It’s touch and go day by day. Current diagnosis is IBS. Thanks for all of your posts.

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I was in remission for two years and then it reared it's ugly head again! Currently, I have been battling this relapse for two years. I'm having great difficulty getting off the prednisone, though I am on a low dose. Most people here would suggest to keep stress levels low and I would agree 100%!

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@kimh

It's the worst, when you actually start questioning your sanity! Been there and done that too! I am still off work and my job is a pretty stressful one, so I don't know what will happen when my insurance (sick leave) runs out! Another stressor!! I have wondered if I wasn't born with this disease with the symptoms laying dormant until that big bad fall on black ice! BTW, 70 is a spring chicken!!!

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Lol!🤣I’m not sure about that kimh. I sure agree with the idea that stress upsetting all. My motto has become “keep smiling, keep moving.” Being positive, developing good coping skills and becoming creative has helped I’m sure!❤️

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@kimh

I was in remission for two years and then it reared it's ugly head again! Currently, I have been battling this relapse for two years. I'm having great difficulty getting off the prednisone, though I am on a low dose. Most people here would suggest to keep stress levels low and I would agree 100%!

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👍❤️

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@gussypup333

Does anyone know of any ny doctors who can treat this?

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Darrell Pardi at Mayo in Rochester

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Seems like the mesentery and it's problems are a relatively new area. I have a different type problem (well they don't think it's a problem) with my mesentery, so i won't go on here other than to say that.

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@elle1233

Seems like the mesentery and it's problems are a relatively new area. I have a different type problem (well they don't think it's a problem) with my mesentery, so i won't go on here other than to say that.

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Hi elle1233, does seem like they are discovering much about this organ. I am thankful for sure. Please feel free to share with us. Although we have some issues/concerns that are similar, many seem very mysterious. As kimh said earlier-we learn by sharing. 👍❤️

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@musicflowers4u

These posts leave me to realize it’s possible for MP
To return probably even these three years post cancer surgery. It’s touch and go day by day. Current diagnosis is IBS. Thanks for all of your posts.

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We learn so much from each other, @musicflowers4u, at Connect.

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@billindc

Darrell Pardi at Mayo in Rochester

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Hello All:
As @billindc mentioned his Mayo doctor's name, I thought you might find this information helpful. It is an introduction to Dr. Pardi and gives some helpful information about his research and experience.

https://www.mayo.edu/research/faculty/pardi-darrell-s-m-d/bio-00086058?_ga=2.259229898.1521299914.1563835831-1221957091.1534862430

Here is a video about a patient at Mayo who had a similar problem. As she will report, Dr. Pardi was also her doctor as well.

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@jarnold246

I finally took my situation into my own hands and decided to reach out to Mayo to try to get in to see a GI doc there. I have an appointment in late Oct. I am looking for any advice about what to expect. I do not know what doc I will see yet, but am in the process of getting my imaging and notes from my GI doc here to bring with me. I would appreciate any and all advice. Thanks in advance!

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I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

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@cconnors

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

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Thanks for sharing your good experience, @cconnors.

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@cconnors

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

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Actually, I have a question regarding what medications have been recommended for flare ups? I am having a horrible time getting off Prednisone. Each time I wean down, even just half a mg., I have been relapsing and have to begin all over again! So frustrating!

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Have you addressed this with your doctor, @kimh? Perhaps others in the group will share what meds work well for them.

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@kimh

Actually, I have a question regarding what medications have been recommended for flare ups? I am having a horrible time getting off Prednisone. Each time I wean down, even just half a mg., I have been relapsing and have to begin all over again! So frustrating!

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I have had good results with Meloxicam. I only take it every day if I am having a flare up, otherwise either every other day or twice a week. It has really helped me manage the inflammation.

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