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

Welcome to Connect @retrebotic.
I see you’ve already met @mjg1160. Allow me to also introduce you to @bertbiz @billindc @mardellepoff @billymac65 and the others sharing here. Someone from @lisas444‘s group may be able to recommend a Mesenteric Panniculitis specialist in Los Angeles. @billindc was able to find a specialist in DC who coordinated his care with specialists here at Mayo Clinic.

You’re wise to plan ahead and prepare questions for your appointment with your husband’s GP. What questions have you thought of so far?

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Thank you Mjg1160! I think diet will make a difference, thank you for the recommendation. Already I have him eating all organic. He does have a reaction to some bread products (he breaks out in hives) and milk products. I read the right diet can help with inflammation. Hopefully I can get him to agree.

Colleen, once we get the blood work back we will know more. I want my husband tested for allergies. Then I plan on asking his primary doctor if he has any experience with this?I will ask if this can be an infection in the area ( I read that is sometimes the case)? I plan on asking if a biopsy is recommended (I would feel better if it was biopsied)? I plan on asking if he has a colleague who is a rheumatologist that has knowledge or specializes in this? I plan on asking the rheumatologist if there is a holistic approach to this, before taking steroids since he is experiencing no pain? Will tumeric help rather then a steroid? Also is this a progressive disease that leads to major problems later, or is it a disease that is in and out of remission?

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I did find two doctors in Los Angeles who list having experience but I’m concerned that they don’t really, I of course will call. Also I have a rheumologist I really like ( I test high for RA, but no rheumatoid so I check in with him once a year) I will see if he has knowledge of this.

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@retrebotic

Thank you Mjg1160! I think diet will make a difference, thank you for the recommendation. Already I have him eating all organic. He does have a reaction to some bread products (he breaks out in hives) and milk products. I read the right diet can help with inflammation. Hopefully I can get him to agree.

Colleen, once we get the blood work back we will know more. I want my husband tested for allergies. Then I plan on asking his primary doctor if he has any experience with this?I will ask if this can be an infection in the area ( I read that is sometimes the case)? I plan on asking if a biopsy is recommended (I would feel better if it was biopsied)? I plan on asking if he has a colleague who is a rheumatologist that has knowledge or specializes in this? I plan on asking the rheumatologist if there is a holistic approach to this, before taking steroids since he is experiencing no pain? Will tumeric help rather then a steroid? Also is this a progressive disease that leads to major problems later, or is it a disease that is in and out of remission?

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Great questions RT! I bet some of the MP people here can share their experiences with some of things you’re asking about, like biopsies, steriods, disease progression and rheumatologists.

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Hi i was diagnosed 6 months ago , Gotten nowhere after seeing multiple doctors, who don’t know what to do. any recommendation for a doc in Houston tx ?

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Welcome @txbear. Your story of dealing with doctors who are not familiar with MP sounds similar to many others sharing in this discussion. I hope someone here has knowledge of a specialist in Houston.
Should you wish a second opinion, please contact Mayo Clinic here: http://mayocl.in/1mtmR63

Liked by txbear

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Hello, I’ve been recently diagnosed with MP a few months ago. A CT scan uncovered the issue while looking for diverticulitis (which was negative). The CT guys thought I should do a colonoscopy to get a full image of the area. Which I did, and all is good. The GI doc says that if I can manage the MP pain that not treating it is fine. He also added that I should wait to see if I encounter severe pain before considering Prednisone because of the side effects.

I’m just wondering – how severe is the pain this community is experiencing? For me, it’s more “uncomfortable” than “crippling”. I mean, it never has stopped me from going to work, or woken me up from sleeping. It’s more annoying than anything…but I’m curious if anyone else has the same kind of issue? Also, is there any over the counter drugs that might be effective (ibuprofen?).

I’m male, 46.

Thanks,
Mike

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@miker46

Hello, I’ve been recently diagnosed with MP a few months ago. A CT scan uncovered the issue while looking for diverticulitis (which was negative). The CT guys thought I should do a colonoscopy to get a full image of the area. Which I did, and all is good. The GI doc says that if I can manage the MP pain that not treating it is fine. He also added that I should wait to see if I encounter severe pain before considering Prednisone because of the side effects.

I’m just wondering – how severe is the pain this community is experiencing? For me, it’s more “uncomfortable” than “crippling”. I mean, it never has stopped me from going to work, or woken me up from sleeping. It’s more annoying than anything…but I’m curious if anyone else has the same kind of issue? Also, is there any over the counter drugs that might be effective (ibuprofen?).

I’m male, 46.

Thanks,
Mike

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Welcome to Connect @miker46! Allow me to introduce you to a few other members who may be able to share their experience. Please meet @bertbiz, @billindc, @mardellepoff and @billymac65. Do any of you know of any over-the-counter medication to alleviate MP pain?

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@miker46

Hello, I’ve been recently diagnosed with MP a few months ago. A CT scan uncovered the issue while looking for diverticulitis (which was negative). The CT guys thought I should do a colonoscopy to get a full image of the area. Which I did, and all is good. The GI doc says that if I can manage the MP pain that not treating it is fine. He also added that I should wait to see if I encounter severe pain before considering Prednisone because of the side effects.

I’m just wondering – how severe is the pain this community is experiencing? For me, it’s more “uncomfortable” than “crippling”. I mean, it never has stopped me from going to work, or woken me up from sleeping. It’s more annoying than anything…but I’m curious if anyone else has the same kind of issue? Also, is there any over the counter drugs that might be effective (ibuprofen?).

I’m male, 46.

Thanks,
Mike

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Hi Mike,
I was diagnosed with MP in May of this year. I had a lot of pain leading up to the diagnosis. I had a CT Scan and once diagnosed, the doctor put me on 40 mg of Prednisone for a few weeks, then started to taper me off which took until early August. The high dose of Prednisone made me feel “speedy.” I didn’t sleep well, but the pain went away. I didn’t have any pain until I was tapered off to about 15 mg. a day. I was put on a low-fiber diet (white rice, white flour, no veggies, etc.) Then the pain was mild, nothing crippling. I had a second CT Scan and the doctor told me the MP was “resolving.” So that news was good. The doctor also told me to think of MP (at this milder stage) like it’s IBS. We will be managing flare-ups if they happen. I was put on the FODMAP diet. On that diet you are encouraged to incorporate certain vegetables back in your diet, but slowly and only one kind of vegetable at a time so that you can figure out which ones work for you and which ones don’t. It’s a lot of trial and error, but worth it. I’ve noticed one “sore spot” in my abdomen and have to be careful not to roll over in my sleep and set it off. I also have to be careful my cats don’t walk on the spot. I may be hyper aware of my pain levels at this point. Some days are much better than others, but it is manageable. At the beginning I drank a lot of banana smoothies made with Kefir and Cinnamon. That was very soothing. So if I’m feeling like I’m having a flare up, I eat soft foods, like eggs and tofu with rice. http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ As for pain, I’ve been taking over-the-counter acetaminophen (Tylenol). I have been banned from taken any Ibuprofen ever again, as that may have contributed to this condition. What other contributing factor for me are family genetics. My father had Crohn’s Disease and my mother had Non-Hodgkins Lymphoma.

I will be going to the GI Doctor next week to view my CT Scans side-by-side. I am going to talk to her about the mild pain I am experiencing and find out what else can be done, if anything.

I hope this has been helpful to you.

Take Care,
Roberta
@bertbiz

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I was diagnosed with mesentery panniculitis in 2010. went thru er caner center removed 3 masses no cancer. took my spleen didn’t record it. why. so 2016 now same pain in back side stomach issues somewhat. mri after car accident showed diverticulosis. Moffit has been monitoring me but now this pain I have no life now. disability. I thought it was mostly my back but know I don’t know. think I’m at or entering stage three. hope cancer center will treat me. pcp not so good. on predisone. this is from my moms family. I have worked in health care a lot. EVERYONE SHOULD LOOK INTO IF CELIAC DESEASE IS IN THEIR FAMILY OR IF THEY HAVE IT. THIS CAN BE A SECONDARY CONDITION TO IT. I know in my family its almost all of them on moms side from Scotland. I will be praying for all of you this is no life. God can get us thru.

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@mommasaid

I am new to this site I was recently diagnosed with messenteric paniculitis
I have abdominal pain at nite maybe I am too busy to notice during day but it wakes me up I am told mine is mild I am short wasted and it usually is my entire abdomen that hurts sometimes radiating outward and sometimes brought on when I turn on my side sometimes it is just the lower abdomen Does anyone experience this Is there a special diet? Thanks

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Acually I was on a fresh food diet for a year felt great lost 40 pounds was running lakes. then I went back to drinking cola and bad food again when my life changed. I think it was a big contributor to this back side stomach pain.

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this is a secondary condition to a primary most often. Lymphoma is one but I just read it is stage three. You have that baby God will provide and help.

Liked by Deena

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@snoopdog

I was diagnosed with mesentery panniculitis in 2010. went thru er caner center removed 3 masses no cancer. took my spleen didn’t record it. why. so 2016 now same pain in back side stomach issues somewhat. mri after car accident showed diverticulosis. Moffit has been monitoring me but now this pain I have no life now. disability. I thought it was mostly my back but know I don’t know. think I’m at or entering stage three. hope cancer center will treat me. pcp not so good. on predisone. this is from my moms family. I have worked in health care a lot. EVERYONE SHOULD LOOK INTO IF CELIAC DESEASE IS IN THEIR FAMILY OR IF THEY HAVE IT. THIS CAN BE A SECONDARY CONDITION TO IT. I know in my family its almost all of them on moms side from Scotland. I will be praying for all of you this is no life. God can get us thru.

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Hi @snoopdog! Let me be the first to welcome you to Connect, where I think you’ll find a lot of relevant information and support here as we have a lot of members who are living with MP, diverticulitis and celiac as well. You might also be interested in the discussion on diverticulitis here http://mayocl.in/2cpRbiw

Snoopdog, help us understand your current diagnosis. You said you have mesentery panniculitis and diverticulitis. Do you also have lymphoma?

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@miker46

Hello, I’ve been recently diagnosed with MP a few months ago. A CT scan uncovered the issue while looking for diverticulitis (which was negative). The CT guys thought I should do a colonoscopy to get a full image of the area. Which I did, and all is good. The GI doc says that if I can manage the MP pain that not treating it is fine. He also added that I should wait to see if I encounter severe pain before considering Prednisone because of the side effects.

I’m just wondering – how severe is the pain this community is experiencing? For me, it’s more “uncomfortable” than “crippling”. I mean, it never has stopped me from going to work, or woken me up from sleeping. It’s more annoying than anything…but I’m curious if anyone else has the same kind of issue? Also, is there any over the counter drugs that might be effective (ibuprofen?).

I’m male, 46.

Thanks,
Mike

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Thank you, Roberta. This information is very insightful. Other than feeling “speedy” did you experience any other side effects? (ie the dreaded, “moon face”).

I’ll try figuring out what my triggers are with respect to my diet..and try the soft foods on flare up approach.

Thanks again for your time,
Good to hear things are better! 🙂

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@miker46

Hello, I’ve been recently diagnosed with MP a few months ago. A CT scan uncovered the issue while looking for diverticulitis (which was negative). The CT guys thought I should do a colonoscopy to get a full image of the area. Which I did, and all is good. The GI doc says that if I can manage the MP pain that not treating it is fine. He also added that I should wait to see if I encounter severe pain before considering Prednisone because of the side effects.

I’m just wondering – how severe is the pain this community is experiencing? For me, it’s more “uncomfortable” than “crippling”. I mean, it never has stopped me from going to work, or woken me up from sleeping. It’s more annoying than anything…but I’m curious if anyone else has the same kind of issue? Also, is there any over the counter drugs that might be effective (ibuprofen?).

I’m male, 46.

Thanks,
Mike

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Hi miker46, I did not get the dreaded moon face. On the good side effect front, nothing, I mean nothing hurt! Not my back, my hip, my neck. All the things that are always sore. The speediness was the biggest side effect. When I was tapering off I noticed my hair falling out. I researched it and it seems to be common, and it does grow back. I started taking Biotin. The hair loss seems to be lessening. I am lucky to have really thick hair. No one would say, “OMG, you’re losing your hair!” But I can tell the difference.

I’m so glad you found my post helpful. All this experience should count for something, right?

Roberta

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