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

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

REPLY
@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

Hi Von
Things have been going alright for me I guess. I was pretty disappointed when my GI took me off of Prednisone after only being on it for 3 days. I had 1 good day on it but 2 days of pain and the same discomfort. I had another CT scan and this time with contrast. An abdominal mass was found and I have surgery scheduled on February 15. They will send it out for pathology and biopsy it so I’ll know more after my follow up with him on February 28th. How have you been?
Dennis

REPLY
@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

I have been good, thank you for asking. Still asymptomatic.Thanks for responding I have been wondering how you were doing. Will you have a fine needle biopsy? The main thing is to rule out any other issues I guess so that they can focus on the MP treatment. I think the abdominal mass is pretty typical in the diagnosis. I’m not 100 percent sure but most examples of CT’s I’ve seen refer to It along with the lymph issues. I really hope everything works out well with you regarding this test, I’m sure it will so you shouldn’t worry much, hard not to right. I hope the inflammation resides and you can get some relief. Please keep us posted and let us/me know how the test comes out. Best wishes for you, I will pray for you, and your family.von

REPLY
@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

Thank you for your thoughts and prayers. Dealing with this as well as my wife’s chemo treatments for her stage 4 breast cancer has been a a lot but we are just trying to go 1 day at a time. I believe that you are right about the fine needle biopsy. I will keep you posted. All my best, Dennis

REPLY
@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

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.

REPLY
@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.

REPLY

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

REPLY
@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

Jump to this post

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.

REPLY
@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

Jump to this post

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?

REPLY

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?

REPLY
Please sign in or register to post a reply.
  Request Appointment