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

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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@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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@waterboy Bill,

Good idea. Pharmacists are a great source of information regarding meds. We often don't think to check in with them when we have a question. I appreciate your reminding us of this important health care resource.

Tresa

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@kanaazpereira

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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Thank you on your reply regarding MP. I was getting somewhat agitated when I was getting everything anybody was sending regarding auto immune. I've been this route before with MD's who think they need to just give me laxatives to manage MP. This was a Brigham's Woman and Dana Farber in Boston. This was after my blood panels were so out of norm I was sent to a lymphoma specialist for 6 months of blood and lab work.
This is how much help I've got since 2012 when my first onset attack happened. So what I'm looking for is just MO related issues and or treatment ideas from others patients whom are MP patients

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There is no underlying cause with my MP either, at least I hope not since they are more reluctant to follow any guidelines at my medical facility. Please excuse my non reply's to others if you did send me information regarding MP or wanted discussion. I was being bombarded with all auto immune disorders and it became a bad distraction when your phone and watch would light up a dozen times a day with non MP issues. All I can say is that I have a pretty good footing about what MP is. It is the problem with NE medical facilities that lack the caring for refined diagnosis and treatment. I can say without a doubt from Brighams Womans and Dana Farber that laxatives isn't the prime treatment for relief as this was what my so called specialist best guess solution.

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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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Hello, To this date, I’ve taken no medication for MP. This isn’t my choice has I had developed a allergy to NSAIDS and steroids about 10 years back. I started to loose my vision if I took steroids, any kind of steroids. Your issue sounds like a dependency problem and feel for you. Your in a catch 22 where your damned either way. As you are the only one that can answer this, do you live better with this medication or without, and are your symptoms from MP causing you to require more prednisone to maintain a comfortable means of living?What I do know is that many cases, that there is a underlining issue in which MP has developed. If you haven’t had a CT and workup lately for MP, I’m talking more than 6 months, you may want to have another battery of testing to stay on top of this. There maybe other issues hiding under MP and I hate to say this, most are pretty bad.Like myself, I do not at this time have any underlining issues that I know of, but being a firefighter for 30 years I’ve been in contact with many bad stuff. This in itself has me worried and therefore I’m trying to stay at least one step ahead. I wish you best of luck and I will reply, as I’m trying to get the hang of this site. I was getting 20-30 emails a day about everything else but MP, so hopefully its getting straightened out. Scott Sent from Mail for Windows 10 

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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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Thank you, yes very upsetting that there is no compass to steer us by for MP. Scott Sent from Mail for Windows 10 

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@kanaazpereira

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 think that you'll find that we have been through ordeals, probably because of the rarity of this disease and therefore, lack of research. I have relapsed (during this latest relapse, unfortunately!) and am back up to 20 mg. of Prednisone daily. It's so frustrating! I have heard of thalidomide, colchicine and azathioprine as other options, but my GI seems to want to stay the course with Prednisone. As of August 18th, I will have been on Prednisone for a year and like you, would like to hear from others who may have had experience with different treatment options….

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@skywave

There is no underlying cause with my MP either, at least I hope not since they are more reluctant to follow any guidelines at my medical facility. Please excuse my non reply's to others if you did send me information regarding MP or wanted discussion. I was being bombarded with all auto immune disorders and it became a bad distraction when your phone and watch would light up a dozen times a day with non MP issues. All I can say is that I have a pretty good footing about what MP is. It is the problem with NE medical facilities that lack the caring for refined diagnosis and treatment. I can say without a doubt from Brighams Womans and Dana Farber that laxatives isn't the prime treatment for relief as this was what my so called specialist best guess solution.

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Hi, @skywave — as long as you are not following the entire Autoimmune Diseases group, you won't be notified about all posts in that group. Your posting here in this MP thread has subscribed you to this discussion, and you'll keep getting notified about posts here.

Thanks for your contributions to this discussion on MP.

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