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

Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain and vomiting. It was discovered with a CT scan and showed several nodules on my mesentery. I have seen a Gastrologist that has referred me to the research hospital. He said that they are the only people that will know how to treat this disease because it’s so rare. It is taking me months to get an appointment and I still have several weeks left before my appointment. I’m really concerned because I’m getting worse. I’ve taken prednisone and zofran for nausea. I’m looking for someone else who has been diagnosed and has more information on this disease. Also, I had gastric sleeve surgery in 2013 and I’m wondering if it is a cause for this disease. If anyone knows if it has been linked please let me know.

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Welcome Mr Bill! I too have no underlying cause-all guesses! Mine never really goes away. I have to watch my triggers constantly. But I can flare at any time and end up in the hospital. I was diagnosed at a University Hospital by CT but have have no specialist that I see regularly. I hate prednisone but have been on it many times. I never travel without some pain meds and Gravol. I’ve had it many years and am getting better all the time with my triggers. How about yours? Do you know any. Very imp for me I’d rest and sleep. I’m usually resting by 7:30 just about every night-yes-I’m a “dull” girl for sure. But I keep smiling. Since retiring from a stressful vocation I have been so much better! Good you’ve joined out group. The Facebook group is great as well.

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@beallm

Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain and vomiting. It was discovered with a CT scan and showed several nodules on my mesentery. I have seen a Gastrologist that has referred me to the research hospital. He said that they are the only people that will know how to treat this disease because it’s so rare. It is taking me months to get an appointment and I still have several weeks left before my appointment. I’m really concerned because I’m getting worse. I’ve taken prednisone and zofran for nausea. I’m looking for someone else who has been diagnosed and has more information on this disease. Also, I had gastric sleeve surgery in 2013 and I’m wondering if it is a cause for this disease. If anyone knows if it has been linked please let me know.

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Hello Bill, glad to have you as part of the group. Your gastroenterologist in my opinion really did you a favor by referring you to a research hospital maybe they can find a way to help you. Then you can tell us all what they did for you because we are all hoping for a cure or at least a treatment. I suggest that you watch your diet. There are some foods that I'll probably never eat again. They send me on a sickness cycle that's horrific. So watch your diet and good luck at your appt. Viv

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I have no underlying cause as well, but do have ankylosing spondylitis. And a few days before my MP flares up I get pain in the joints of my hands.. very odd. Triggers seem to be lack of rest or too much stress. Diet doesn't seem to play much of a role for me. I have tried Bentyl and hyoscyamine as well as prednisone. Starting on Humira shortly for my arthritis and it will be interesting to see if it prevents flare-ups with my MP. I still get a CT scan every 6 months for lymphoma but so far I've been lucky and nothing in that regard has appeared.

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@beallm

Hello, I was diagnosed with Sclerosing Mesenteritis in April after going to the ER with pain and vomiting. It was discovered with a CT scan and showed several nodules on my mesentery. I have seen a Gastrologist that has referred me to the research hospital. He said that they are the only people that will know how to treat this disease because it’s so rare. It is taking me months to get an appointment and I still have several weeks left before my appointment. I’m really concerned because I’m getting worse. I’ve taken prednisone and zofran for nausea. I’m looking for someone else who has been diagnosed and has more information on this disease. Also, I had gastric sleeve surgery in 2013 and I’m wondering if it is a cause for this disease. If anyone knows if it has been linked please let me know.

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Same scenario here. Hard to get pain meds when so few people understand the disease. Darrell Pardi at Mayo is supposed to be the best. Met him once and what a nice guy! You're not alone and symptomatic treatment can really help….. It gets better. I did see a study one time that mentioned a link between Autoimmune disease and previous abdominal surgery but with so few people to study it's hard to make conclusions. I've had my gallbladder removed and have ankylosing spondylitis. Hang in there!

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Morning all! I am wondering if you have big issues with joint pain? I seem to be struggling with many joints being red hot and so uncomfortable, especially at night. Any info you can share-if this is related-thx!

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Three years ago after new lower right quadrant pain, CT saw “misty mesentery” and was told it would resolve. This week CT said possible mesenteric panniculitis. Spent a long time reading past posts here.

I have come away with the following:
1) sometimes autoimmune in nature and AIP diet can help
2) typical treatment involves prednisone or meloxican(m?)
3) lymphoma is sometimes/often(?) related (hate hearing this)
4) very few specialists in US (with Mayo – Pardi or Alexander- being leaders.)

What other insights am I missing?

Do “they” do any sort of scan looking for lymphoma or other cancers?

Guess I should mention the fb group. Is it still there?

Currently awaiting follow up with gastro. Pain level went from bearable to almost intolerable.

Thank you to all who have posted. And sorry if this isn’t in right format or place.
Tim

Liked by cjsims

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@mpdx

Three years ago after new lower right quadrant pain, CT saw “misty mesentery” and was told it would resolve. This week CT said possible mesenteric panniculitis. Spent a long time reading past posts here.

I have come away with the following:
1) sometimes autoimmune in nature and AIP diet can help
2) typical treatment involves prednisone or meloxican(m?)
3) lymphoma is sometimes/often(?) related (hate hearing this)
4) very few specialists in US (with Mayo – Pardi or Alexander- being leaders.)

What other insights am I missing?

Do “they” do any sort of scan looking for lymphoma or other cancers?

Guess I should mention the fb group. Is it still there?

Currently awaiting follow up with gastro. Pain level went from bearable to almost intolerable.

Thank you to all who have posted. And sorry if this isn’t in right format or place.
Tim

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I had a biopsy for MP and it was confirmed, been on steroids 6 mths, now off, only on tomoxefen. I have blood tests to check for Tumours. I am getting cramps Under my chest. Not sure what that is all about. Just been for another Ct scan.

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My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

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Hello, @jimbo91372. Welcome to Mayo Clinic Connect. I can see that you are concerned for your wife, and it's nice that you are looking into the best doctors for her recent diagnosis of messenteric panniculitis. So I'd like to invite @jolied @viva @pcfromfm @billindc @pcfromfm @dianajane @IndianaScott who may know of medical centers in the Chicago area to recommend for this disease or who may be just familiar with medical centers in that region in general that they might recommend.

In the meantime, you might be interested in reading this Mayo Clinic information on the disease: https://mayocl.in/2ObBGc8.

@jimbo91372 – what symptoms are the most bothersome for your wife currently?

@mpdx — I also wanted to extend a welcome to you, as well as mention a few of the summary points you made from reading past posts in this discussion to see if any of the members I've tagged here or other members might have comments:
I have come away with the following:
1) sometimes autoimmune in nature and AIP diet can help
2) typical treatment involves prednisone or meloxican(m?)
3) lymphoma is sometimes/often(?) related (hate hearing this)
4) very few specialists in US (with Mayo – Pardi or Alexander- being leaders.)

When is your follow up with gastroenterology, @mpdx? How has the pain been?

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@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

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Welcome! We are a group growing slowly who find it easy to be supportive and informative when possible. We have members from so many areas of this world. I am not in Chicago but hope you find a doctor to help. Now that the mesentery has been declared an organ maybe we will have more success with help and research. There is also a group on Facebook you may want to join. Your wife is lucky to have you in her corner! How is she feeling? How does the disease present?

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@lisalucier

Hello, @jimbo91372. Welcome to Mayo Clinic Connect. I can see that you are concerned for your wife, and it's nice that you are looking into the best doctors for her recent diagnosis of messenteric panniculitis. So I'd like to invite @jolied @viva @pcfromfm @billindc @pcfromfm @dianajane @IndianaScott who may know of medical centers in the Chicago area to recommend for this disease or who may be just familiar with medical centers in that region in general that they might recommend.

In the meantime, you might be interested in reading this Mayo Clinic information on the disease: https://mayocl.in/2ObBGc8.

@jimbo91372 – what symptoms are the most bothersome for your wife currently?

@mpdx — I also wanted to extend a welcome to you, as well as mention a few of the summary points you made from reading past posts in this discussion to see if any of the members I've tagged here or other members might have comments:
I have come away with the following:
1) sometimes autoimmune in nature and AIP diet can help
2) typical treatment involves prednisone or meloxican(m?)
3) lymphoma is sometimes/often(?) related (hate hearing this)
4) very few specialists in US (with Mayo – Pardi or Alexander- being leaders.)

When is your follow up with gastroenterology, @mpdx? How has the pain been?

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Hi. I am not interested in this illness. Sorry I may have misspoke or accidently replied. Good luck all.

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@lisalucier

Hello, @jimbo91372. Welcome to Mayo Clinic Connect. I can see that you are concerned for your wife, and it's nice that you are looking into the best doctors for her recent diagnosis of messenteric panniculitis. So I'd like to invite @jolied @viva @pcfromfm @billindc @pcfromfm @dianajane @IndianaScott who may know of medical centers in the Chicago area to recommend for this disease or who may be just familiar with medical centers in that region in general that they might recommend.

In the meantime, you might be interested in reading this Mayo Clinic information on the disease: https://mayocl.in/2ObBGc8.

@jimbo91372 – what symptoms are the most bothersome for your wife currently?

@mpdx — I also wanted to extend a welcome to you, as well as mention a few of the summary points you made from reading past posts in this discussion to see if any of the members I've tagged here or other members might have comments:
I have come away with the following:
1) sometimes autoimmune in nature and AIP diet can help
2) typical treatment involves prednisone or meloxican(m?)
3) lymphoma is sometimes/often(?) related (hate hearing this)
4) very few specialists in US (with Mayo – Pardi or Alexander- being leaders.)

When is your follow up with gastroenterology, @mpdx? How has the pain been?

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Hi Lisa, thank you for the welcome! We are currently putting together a package to send to Mayo. She is most bothered by the “sick feeling” , and the cramping/ bloating . She says that the pain is not terrible it’s just non stop now for 7 months! She is on budesonide right now but we haven’t noticed a difference in her condition. Also a follow up MRI showed no significant changes.

Liked by Lisa Lucier

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@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

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Hi @pcfromfm, thank you and my wife has been in touch with a lady that runs a FB page but has yet to connect. I wonder if this is the same one? She is constantly feeling sick, cramping/ bloating, and tightness. It was discovered through an MRI and CT. I wish I could do more for her but I feel helpless!

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@jimbo91372

My wife was diagnosed with messenteric penniculitis a few months ago. We live in the Chicago area and are wondering if anyone can recommend a doctor in our area? Her GI doctor is unfamiliar with the condition and dosent really know what to do. We are in the process of researching doctors but as a lot of you probably already know not many doctors can help with this disease! Hope to hear from someone soon ,thanks!

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Sounds like you are already doing a great job-just increasing your knowledge and understanding of how this disease presents and being patient with her frustrations and coping. Each will change periodically. We all struggle with managing. Have you found foods that are triggers? Many of us have found more rest-just being prone and relaxing helps -I am in bed most evenings by 7. (A very boring person!) also I have juggled diet for many years and have -for now-come up with definite foods that I have eliminated and that has helped a great deal. I live very far north and have no Doctor who knows anything about my issues. So I must be very careful. Have you come up with any especially positive coping skills?

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