1. < Digestive Health

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.

snoopdog | @snoopdog | Jan 14, 2017
In reply to @dennisl27 "I thought many of you would find the attached article interesting. http://www.cnn.com/2017/01/04/health/new-organ-mesentery/" + (show)
@dennisl27

I thought many of you would find the attached article interesting.
http://www.cnn.com/2017/01/04/health/new-organ-mesentery/

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this is really scary cause the doctor at the local cancer center has never seen mesentric panniculitis and has over dosed me on steroids according to the er dr and my last pcp. now i have cushings  and my last cat scan says enlarged heart and lung not real right. could you help  me with the correct dr i am to care with. is it a endocrinologist or gi specialist? i currently have no care specialist. plz write.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 14, 2017
In reply to @dennisl27 "I thought many of you would find the attached article interesting. http://www.cnn.com/2017/01/04/health/new-organ-mesentery/" + (show)
@dennisl27

I thought many of you would find the attached article interesting.
http://www.cnn.com/2017/01/04/health/new-organ-mesentery/

Jump to this post

Hello @snoopdog, it sounds like you are need of an expert opinion or second opinion. One thing that I have learned from the fantastic members of Mayo Clinic Connect is that you should never give up until you find the right physician that can help you the best.

If you are interested in getting a second opinion from Mayo Clinic, here is the link to do so, http://mayocl.in/1mtmR63.

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mary987 | @mary987 | Jan 15, 2017

Hy everybody

My husband has been diagnosed with MP. He is taking 60mg prednisone a day since 4days now. There is absolutely no improvement in the pain level that are quite debilitating. I would like to ask how long its normally takes to notice some changes? The doc would like to go on for 1 month. The pains worsen when he has to stay seated for hours (for example at the office). Sometimes it s so bad that also breathing hurts. Are those symptoms common for people with MP?

Thank you very much for your support!

Mary

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1 reply
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 15, 2017
In reply to @londonmark "Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel..." + (show)
@londonmark

Just been diagnosed with Mesenteric Panniculitis by CT with contrast following an acute suspected small bowel obstruction and months of persistent upper right quadrant pain. I have a history of Celiac disease (diagnose by endoscopy 2010) and more recently Chronic Inflammatory Demylinating Polyradicular Neurooathy (by biopsy) both (all three?) of which are autoimmune. I take fentanyl and gabapentin for the constant debilitating pain. Interested in following this thread for others stories and to add my own situation to the record. Based in London I attend the well respected Atkinson Morley Dept at St Georges Hospital, London. (Any other U.K sufferers on here?) Mark

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Hello @londonmark, welcome to Connect. Thank you for joining us all the way from London and taking a little time to share a bit about yourself. You are off to a good start by finding a long, active discussion about MP.

@londonmark, do you have a specific question for the other members of this discussion, or are you just looking to share your experiences and meet others in similar situations? All of the above are great ways to utilize Connect.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 15, 2017
In reply to @mary987 "Hy everybody My husband has been diagnosed with MP. He is taking 60mg prednisone a day..." + (show)
@mary987

Hy everybody

My husband has been diagnosed with MP. He is taking 60mg prednisone a day since 4days now. There is absolutely no improvement in the pain level that are quite debilitating. I would like to ask how long its normally takes to notice some changes? The doc would like to go on for 1 month. The pains worsen when he has to stay seated for hours (for example at the office). Sometimes it s so bad that also breathing hurts. Are those symptoms common for people with MP?

Thank you very much for your support!

Mary

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Hello Mary, welcome to Connect. You found the right place to ask other members about MP.

I would like to invite @vdouglas to share their thoughts and experiences with pain medications and effectiveness regarding MP.

@mary987, you said the doc would like him to go a month, will the doc reassess then? Have you made your doc aware of your husband's increasing pain and difficulty?

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mary987 | @mary987 | Jan 15, 2017

Hello Justin

Thank you for your comments.
The pains are going on and worsening since 2012. The diagnosis has always been irritable bowl syndrome. But reading the reports of the docs it cannot be that proeminent lymph nodules and 24/7 pains and p-anka 3 time the norm are the result of a irritable bowl syndrome..not to mention that a CT a couple of years ago mentioned the PM. So after struggling for years we found a Dr. that seems to listen. In these years we have tried FOODMAP, putting away dairies, gluten, fructose, histamine.. nothing seems to help. The belly blows up from time to time so much that it hurts only looking at it. And he cannot breath properly without having pain or sitting straight without having pain. But there are no gastro symptoms (gastro and colonoscopy were ok). It s like fighting against a draught of air since years. The last CT reconfirmed the PM again and the proeminent lymph nodules again. So now we should call the doc after 10 days of prednisone but for what we know 'normal' PM cases respond from the first day on? If the prednisone doesn't work, what is next?

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2 replies
Von, Alumni Mentor | @vdouglas | Jan 16, 2017
In reply to @mary987 "Hello Justin Thank you for your comments. The pains are going on and worsening since 2012...." + (show)
@mary987

Hello Justin

Thank you for your comments.
The pains are going on and worsening since 2012. The diagnosis has always been irritable bowl syndrome. But reading the reports of the docs it cannot be that proeminent lymph nodules and 24/7 pains and p-anka 3 time the norm are the result of a irritable bowl syndrome..not to mention that a CT a couple of years ago mentioned the PM. So after struggling for years we found a Dr. that seems to listen. In these years we have tried FOODMAP, putting away dairies, gluten, fructose, histamine.. nothing seems to help. The belly blows up from time to time so much that it hurts only looking at it. And he cannot breath properly without having pain or sitting straight without having pain. But there are no gastro symptoms (gastro and colonoscopy were ok). It s like fighting against a draught of air since years. The last CT reconfirmed the PM again and the proeminent lymph nodules again. So now we should call the doc after 10 days of prednisone but for what we know 'normal' PM cases respond from the first day on? If the prednisone doesn't work, what is next?

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Hello Mary, this is @vdouglas. I'm sorry to hear about the issues your husband, and you as well, have had to deal with. Sounds like this has been going on for some time. I do not know what your husbands Actual diagnosis is and can only speak based on my personal experience with MP. Mesenteric Panniculitis is an inflammation of the Mesentery "Organ" and surrounding tissue. All of the symptoms you have mentioned in both threads sound typical based on my experience. I had flank pain when standing and had to sit, then if I sat too long I would have to stand. Relied on pain Meds to help but it seems like you just have to find the one position that feels the best. Bloating is very uncomfortable and painful as well. I only had about 4 weeks or so of non stop pain, two very bad weeks. Pain Meds only slightly helped. Never had a doctor try Anti-inflammatory meds. It was two years before I saw a qualified Doctor. My symptoms subsided prior to my Mayo Clinic visit with Dr. Darrell Pardi.

Your husband has had two CT scans that mention Mesenteric Panniculitis. It is important to get copy's of those scans. Get the Disc of the scans from the radiologist not just the report. These discs can show historical changes in the Mesentery and Lymph system and much more. I would recommend a visit to see Dr.Pardi at the Mayo Clinic in Rochester Mn if at all possible. Prior to acceptance for a visit they will probably want to see your husbands CT Discs. Dr. Pardi is very experienced and can prescribe a course of treatment based on your husbands history. There is no cure I am sorry to say and as you probably already know. The treatments can work but may not. The type of treatment is based on symptoms and history and the progression or regression of the inflammation, even family history. Another constant is that this whole thing can be so overwhelming. Neither of you give up hope!
Best wishes and speedy recovery for your husband,
@vdouglas

REPLY
Von, Alumni Mentor | @vdouglas | Jan 16, 2017
In reply to @mary987 "Hello Justin Thank you for your comments. The pains are going on and worsening since 2012...." + (show)
@mary987

Hello Justin

Thank you for your comments.
The pains are going on and worsening since 2012. The diagnosis has always been irritable bowl syndrome. But reading the reports of the docs it cannot be that proeminent lymph nodules and 24/7 pains and p-anka 3 time the norm are the result of a irritable bowl syndrome..not to mention that a CT a couple of years ago mentioned the PM. So after struggling for years we found a Dr. that seems to listen. In these years we have tried FOODMAP, putting away dairies, gluten, fructose, histamine.. nothing seems to help. The belly blows up from time to time so much that it hurts only looking at it. And he cannot breath properly without having pain or sitting straight without having pain. But there are no gastro symptoms (gastro and colonoscopy were ok). It s like fighting against a draught of air since years. The last CT reconfirmed the PM again and the proeminent lymph nodules again. So now we should call the doc after 10 days of prednisone but for what we know 'normal' PM cases respond from the first day on? If the prednisone doesn't work, what is next?

Jump to this post

I would add that Presnisone is a common course of action for inflammation. It may take time for the pain to subside. I do not know how long Prednisone is typically used before stopping it. If your husband tolerates it well the inflammation "could" subside...

Maybe other members can offer their experiences.

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