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

Interested in more discussions like this? Go to the Digestive Health Support Group.

In New England, we do have some pretty fine medical facilities, but for MP it hasn't been a yellow brick road to knowledge and treatment.

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Hi @skywave,

I moved your post about finding informed practitioners for MP, and combined it with this existing discussion. I did this as I thought the other members in this group would also appreciate your insights.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the conversations by members discussing similar questions and concerns.

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I am so sorry so many are in such pain with this illness. I count myself lucky. My pain began around 2009. Around five doctors (specialists in gastro, surgeons, primary, etc.) had consulted with over the years. Various ultrasounds and CR scans resulted in diagnosis of messenteric panniculitis. All of the doctors indicated MP to not be of any concern. Only in 2016 when I read my own report from a CT taken at a hospital ER when I drove myself there in great pain did I find out I needed a biopsy for enlarged lymph node in the mesentery. I sought out a doctor at a major hospital who considered himself knowledgeable in MP who did endoscopy on a lymph node which proved negative. I continued in pain. It was through a blog, and prayer, that I learned of Dr. Pardi and Dr. Alexander at Mayo Clinic in Rochester, MN. I consulted with Dr. Alexander who called in a specialty surgeon after an exploratory was my choice of three options. Dr. Kellogg and his team were at my bedside when I awoke from surgery. I was told they had removed three feet of small bowel, 12 tumors and 13 lymph nodes (six of which tested positive) for Stage IIIB Carcinoid Cancer. Dr. Alexander said although they usually would look for lymphoma in cases like mine, they are often surprised at a different outcome and so they were surprised. I was given names of oncologists to whom they would refer me for follow-up and I chose to go to Dana Farber Cancer Institute where I have blood work every six months and scans once a year. I have had CT and Octreotide shot and scan so far and so far no new cancer. So far no need for medication. I will be followed for a total of ten years. Although my other organs were scanned for metastasis and proved negative, my fatty liver scans are too obscure, so I am seeking the Gallium-68 scan next. Previously used elsewhere in the world for neuroendocrine tumors it is now available in the US. A blog, prayer, and the doctors at Mayo in MN saved my life. Had I not been my own health advocate and refused to accept other (local) surgeons claims that it was impossible to remove the lymph node in the very difficult location in the mesentery (Dr. Kellogg was able to remove that and more), only God knows what stage I would be at now. So I thank those Mayo doctors and my Lord God, and a blog. Dr. Alexander said messenteric panniculitis can be a symptom of an underlying illness, which was the status in my case. So, please, don’t give up. And know that my case was atypical. Colonoscopies do not usually find Carcinoid Cancer, I had stuck to a routine colonoscopy schedule. Most Carcinoid of the small bowel is found during an autopsy as most cases don’t present with pain until the cancer is far along as mine was. Do not quit seeking answers!

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Note typo (CR should be CT).

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@musicflowers4u, Welcome. Thank you so much for sharing your story. I love when patients talk about strong advocacy- it's exactly what we should all be doing. Congratulations.

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@musicflowers4u

I am so sorry so many are in such pain with this illness. I count myself lucky. My pain began around 2009. Around five doctors (specialists in gastro, surgeons, primary, etc.) had consulted with over the years. Various ultrasounds and CR scans resulted in diagnosis of messenteric panniculitis. All of the doctors indicated MP to not be of any concern. Only in 2016 when I read my own report from a CT taken at a hospital ER when I drove myself there in great pain did I find out I needed a biopsy for enlarged lymph node in the mesentery. I sought out a doctor at a major hospital who considered himself knowledgeable in MP who did endoscopy on a lymph node which proved negative. I continued in pain. It was through a blog, and prayer, that I learned of Dr. Pardi and Dr. Alexander at Mayo Clinic in Rochester, MN. I consulted with Dr. Alexander who called in a specialty surgeon after an exploratory was my choice of three options. Dr. Kellogg and his team were at my bedside when I awoke from surgery. I was told they had removed three feet of small bowel, 12 tumors and 13 lymph nodes (six of which tested positive) for Stage IIIB Carcinoid Cancer. Dr. Alexander said although they usually would look for lymphoma in cases like mine, they are often surprised at a different outcome and so they were surprised. I was given names of oncologists to whom they would refer me for follow-up and I chose to go to Dana Farber Cancer Institute where I have blood work every six months and scans once a year. I have had CT and Octreotide shot and scan so far and so far no new cancer. So far no need for medication. I will be followed for a total of ten years. Although my other organs were scanned for metastasis and proved negative, my fatty liver scans are too obscure, so I am seeking the Gallium-68 scan next. Previously used elsewhere in the world for neuroendocrine tumors it is now available in the US. A blog, prayer, and the doctors at Mayo in MN saved my life. Had I not been my own health advocate and refused to accept other (local) surgeons claims that it was impossible to remove the lymph node in the very difficult location in the mesentery (Dr. Kellogg was able to remove that and more), only God knows what stage I would be at now. So I thank those Mayo doctors and my Lord God, and a blog. Dr. Alexander said messenteric panniculitis can be a symptom of an underlying illness, which was the status in my case. So, please, don’t give up. And know that my case was atypical. Colonoscopies do not usually find Carcinoid Cancer, I had stuck to a routine colonoscopy schedule. Most Carcinoid of the small bowel is found during an autopsy as most cases don’t present with pain until the cancer is far along as mine was. Do not quit seeking answers!

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@musicflowers4u

Hello, I just noticed in your post that you mentioned Carcinoid cancer. I wanted to take the opportunity to invite you to share in our NET discussion group. Here is the link to our NET discussion, https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/tab/discussions/

Most of us feel like you do – we are fortunate that this rare disorder was found, one way or the other. One word of caution, though, I see that you were told to continue the follow up for 10 years, however, on my 11th year (after my 2nd surgery) I had another NET appear – it is better to keep the surveillance going longer than necessary to ensure that you stay free from NETs.

I would be interested in hearing about the results of the Gallium-68 when you have it.

I look forward to hearing from you again.

Teresa

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@gabrield

Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

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Hi @gabrield
It's so frustrating to run into unhelpful people in a field where we seek help! I hope this site helps you! We are full of experiences, helpful advice and hope.

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I was wondering if anyone has become Prednisone dependent? For the third time (of this bout!), I have tried to taper off the Prednisone. At 10 mg. I begin feeling much better, but soon enough the symptoms return. My GI wants to up my dosage once again to 20 mg. for a couple of weeks, 15 mg. for another month and then back down to 10 mg. again. I am so disheartened because in a week, I was supposed to be tapering down to 5 mg. daily. I have been on Prednisone since August of last year and am wondering if I have become dependent on it? I have read a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326978/) and wondered if anyone has used colchicine to aid in the tapering off of Prednisone?

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@kimh

I was wondering if anyone has become Prednisone dependent? For the third time (of this bout!), I have tried to taper off the Prednisone. At 10 mg. I begin feeling much better, but soon enough the symptoms return. My GI wants to up my dosage once again to 20 mg. for a couple of weeks, 15 mg. for another month and then back down to 10 mg. again. I am so disheartened because in a week, I was supposed to be tapering down to 5 mg. daily. I have been on Prednisone since August of last year and am wondering if I have become dependent on it? I have read a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326978/) and wondered if anyone has used colchicine to aid in the tapering off of Prednisone?

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If I were you I would talk to a trusted pharmacist. I take prednisone for COPD flares, maybe wk at a time and if longer dosage is tapered off.

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@kimh

I was wondering if anyone has become Prednisone dependent? For the third time (of this bout!), I have tried to taper off the Prednisone. At 10 mg. I begin feeling much better, but soon enough the symptoms return. My GI wants to up my dosage once again to 20 mg. for a couple of weeks, 15 mg. for another month and then back down to 10 mg. again. I am so disheartened because in a week, I was supposed to be tapering down to 5 mg. daily. I have been on Prednisone since August of last year and am wondering if I have become dependent on it? I have read a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326978/) and wondered if anyone has used colchicine to aid in the tapering off of Prednisone?

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Very good advice! Thank-you!

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