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

You as well @nancykeenan! Also, for meds. I have been on Prednisone (for 3 years now, unfortunately), Azathioprine, Tamoxifen and Methotrexate. Your GI may want to start you on a Prednisone dose. The side effects are ugly (weight gain, facial hair, anger management lol), but it may help you! Good luck!

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Hello – I am curious to know if anyone here that has been diagnosed with Mesenteric Panniculitis also has a skin lesion problem. I have had the lesions on arms, legs, across my upper back and a couple on my stomach, with scarring. If so, would the same medications address this issue??? Thanks to all for sharing, I have learned quite a bit already!

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Sorry no lesions. Could the lesions be a sign of something else?

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@ken82

@jimbodc I am not sure where you are located but there are 3 Mayo Clinics.. Jacksonville, FL, Rochester, MN, Scottsdale, AZ… also look at Cleveland Clinic for excellent GI Care.. Boston General and Johns Hopkins are not as well known to me.. but they have great reputations..

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Thank you Ken! I just verified with my insurance and they cover Mayo as well as Johns Hopkins. Been reading and Mayo seems to be the best but both FL and MN are a hike from where I am in DC. I am going to at least see if they can review my scans remotely as I am nervous having anyone cut into me for a biopsy that has no experience with this.

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@beckymel

Hello – I am curious to know if anyone here that has been diagnosed with Mesenteric Panniculitis also has a skin lesion problem. I have had the lesions on arms, legs, across my upper back and a couple on my stomach, with scarring. If so, would the same medications address this issue??? Thanks to all for sharing, I have learned quite a bit already!

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I have had some -like hot spots that have bubbled up. Almost an allergic reaction on my arms, exactly same spot every time. Not sure if I have had them more than about 3-4 times in the middle of a bad flair up. Yes and the prednisone fixed them. I also had cysts in the mesentery swell and last for a long time pressing against a nerve bottom of my backbone-very painful . I could hardly walk. They burst one day and are scar tissue now.

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@beckymel

Hello – I am curious to know if anyone here that has been diagnosed with Mesenteric Panniculitis also has a skin lesion problem. I have had the lesions on arms, legs, across my upper back and a couple on my stomach, with scarring. If so, would the same medications address this issue??? Thanks to all for sharing, I have learned quite a bit already!

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Hi Beckymel, I am experiencing what seems to be hives all over my arms, shoulders, upper back and stomach. Also lesions on my head under my hair. All started when the discomfort started in July 2020. The bumps come and go and nothing has changed in meds or diet, other than eliminating things that create more discomfort which for me is red meat, pork, spicy seasoning, and fried foods.

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@jimbodc

Thank you Ken! I just verified with my insurance and they cover Mayo as well as Johns Hopkins. Been reading and Mayo seems to be the best but both FL and MN are a hike from where I am in DC. I am going to at least see if they can review my scans remotely as I am nervous having anyone cut into me for a biopsy that has no experience with this.

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@jimbodc Well there you are near John Hopkins in the Baltimore area….. Go for it.. My granddaughter went there and was pleased.. Ken

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@kimh

You as well @nancykeenan! Also, for meds. I have been on Prednisone (for 3 years now, unfortunately), Azathioprine, Tamoxifen and Methotrexate. Your GI may want to start you on a Prednisone dose. The side effects are ugly (weight gain, facial hair, anger management lol), but it may help you! Good luck!

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prednisone didn’t work for my husband- he’s on Mitigare ( for about 1 1/2 weeks now ) maybe seeing a slight improvement but was hoping it worked faster! Has to go for test next week to make sure it’s not destroying his bone marrow! Does everyone see an improvement with special diet restrictions ? Curious if we should keep a log of when he’s worse & what he ate? Curious about how others feel about the stress & test too? Thanks for all the support everyone!

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@mitsy2020

prednisone didn’t work for my husband- he’s on Mitigare ( for about 1 1/2 weeks now ) maybe seeing a slight improvement but was hoping it worked faster! Has to go for test next week to make sure it’s not destroying his bone marrow! Does everyone see an improvement with special diet restrictions ? Curious if we should keep a log of when he’s worse & what he ate? Curious about how others feel about the stress & test too? Thanks for all the support everyone!

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For me any minor improvement came when I ate smaller amounts more often, most of the foods I was told to avoid are foods that I rarely eat anyway (fried, spicy, acidic, etc). I tend to feel very full much quicker anyway, but because of the bloating I am not losing any weight. My stress is coming from waiting for the next round of appointments since here you have to wait two months just to see the specialist. You would think if you had something as rare as MP they would want to see you quicker!

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@mitsy2020

prednisone didn’t work for my husband- he’s on Mitigare ( for about 1 1/2 weeks now ) maybe seeing a slight improvement but was hoping it worked faster! Has to go for test next week to make sure it’s not destroying his bone marrow! Does everyone see an improvement with special diet restrictions ? Curious if we should keep a log of when he’s worse & what he ate? Curious about how others feel about the stress & test too? Thanks for all the support everyone!

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Hi mitsy2020, I am happy to hear of some improvement for your husband. When this got real bad for me last month my abdomen felt super tight and bloated was and I couldn't catch my breath. I was under an intense deadline at work and putting in 14 hour days. Went to the ER and was diagnosed by CT with no other issues shown other than a very high white blood count. My tests are still underway and my Doctor will not put me on meds until tests are done. I have discovered foods that make it worse. For me, the reaction comes in about 6 hours into the next day. Also, when stressed with unrealistic demands at work my abdomen now immediately becomes painful. I feel a food diary would be a great idea, something I haven't started yet. Foods that seem to cause me issues are red meat, pork products, processed lunch meat, anything fried, anything spicy, and working on backing off the chocolate (I have a major sweet tooth). I have added lots of water, veggies, probiotics, and magnesium oxide which have all seemed to help. This group has been so helpful to not feel so alone and hospitals that can help, planning on visiting John Hopkins or Mayo in the new year. – Jim

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@jimbodc

Hi mitsy2020, I am happy to hear of some improvement for your husband. When this got real bad for me last month my abdomen felt super tight and bloated was and I couldn't catch my breath. I was under an intense deadline at work and putting in 14 hour days. Went to the ER and was diagnosed by CT with no other issues shown other than a very high white blood count. My tests are still underway and my Doctor will not put me on meds until tests are done. I have discovered foods that make it worse. For me, the reaction comes in about 6 hours into the next day. Also, when stressed with unrealistic demands at work my abdomen now immediately becomes painful. I feel a food diary would be a great idea, something I haven't started yet. Foods that seem to cause me issues are red meat, pork products, processed lunch meat, anything fried, anything spicy, and working on backing off the chocolate (I have a major sweet tooth). I have added lots of water, veggies, probiotics, and magnesium oxide which have all seemed to help. This group has been so helpful to not feel so alone and hospitals that can help, planning on visiting John Hopkins or Mayo in the new year. – Jim

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Morning Mr Jim. Happy to hear you are collecting info on what makes the difference! Long slow process but so worth the patience. I’ve had MP for many years now. I have found small meals and extra rest are some of what helps. I can’t manage any form of corn or onions. I’m like you anything spicy bites back for too long and too hard. No alcohol, no seafood, small amounts of red meat and dairy. I can’t say enough more rest and less stress are vital. Keeping positive so important. Good luck on your journey!❤️

Liked by constancelee

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@mitsy2020

prednisone didn’t work for my husband- he’s on Mitigare ( for about 1 1/2 weeks now ) maybe seeing a slight improvement but was hoping it worked faster! Has to go for test next week to make sure it’s not destroying his bone marrow! Does everyone see an improvement with special diet restrictions ? Curious if we should keep a log of when he’s worse & what he ate? Curious about how others feel about the stress & test too? Thanks for all the support everyone!

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Morning Mitsy2020. I have done the elimination diet a number of times. It sure made a difference. I started with boiled white rice and bits of boiled white chicken meat. Adding only one good item at a time for 3 days to see if I am still good. It’s a long process but worth it. I cannot eat any form of onion or corn, tea or mixtures with many ingredients. I can’t do any strong spices, alcohol, mustard, any seafood. I can only manage small meals, I don’t do convenience foods because there too many chemicals that seem to bother me. It becomes a way of life and easier than it seems. I eat old fashioned food. Most important is to eliminate stress. I was a teacher -always the “crazy” kids and adults -prison, reform school, psychiatric hospitals. So yes -stress made a huge difference. State of mind, good active coping skills important. Stay positive. Eliminate as much stress as you can. But getting lots of extra rest essential. Have you husband find a new way to rest, relax and recoup. We all seem to vary with what works except this it seems. Hugs and good luck on your journey!!

Liked by constancelee

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@jimbodc

Hi Beckymel, I am experiencing what seems to be hives all over my arms, shoulders, upper back and stomach. Also lesions on my head under my hair. All started when the discomfort started in July 2020. The bumps come and go and nothing has changed in meds or diet, other than eliminating things that create more discomfort which for me is red meat, pork, spicy seasoning, and fried foods.

Jump to this post

I’m sorry about your hives. They have something to do with meds or diet. Something is toxic to you. It is probably not SM but rather some one or a combination of treatments.

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@beckymel

Hello – I am curious to know if anyone here that has been diagnosed with Mesenteric Panniculitis also has a skin lesion problem. I have had the lesions on arms, legs, across my upper back and a couple on my stomach, with scarring. If so, would the same medications address this issue??? Thanks to all for sharing, I have learned quite a bit already!

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Nope

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@constancelee

I’m sorry about your hives. They have something to do with meds or diet. Something is toxic to you. It is probably not SM but rather some one or a combination of treatments.

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Thanks constancelee, only change is this diagnosis, no change in meds or foods and Docs haven't put me on anything for this diagnosis until my biopsy is complete. Happens to me on days when I feel the worst.

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