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

@croller68

Hi, I have been fighting this severe abdominal pain that tends to stay near my belly button and then likes to radiate left. Some days its manageable and some days I am literally doubled up waiting to die. I recently got a job at a hospital with awesome benefits so I starting talking to every doctor I could find as I support them all. Various pain management drugs were tried with little effect so I found a GI who scoped me from both ends and found nothing. Then they ordered a CT and wham there it was. I was diagnosed with mesenteric panniculitis but finding what is best to kill the pain is a battle still raging. They started me on 40mg of prednisone which works great but is causing other issues such as fast heart rate and elevated blood pressure not to mention makes me moody as hell. 10 years ago I was diagnosed with prostate cancer at age 38. I already have high blood pressure and I am also a prostate cancer survivor. My doctor is not all that versed on this condition and both the GI docs here at the hospital seem also not to know much about it. My doctor has tried other things but nothing works like the prednisone. I just can’t handle the side effects. I wish I could find someone locally who has a good understanding of this disease and could help me find a way to cut out the pain. I was quite overweight and have been on a diet to the point that I have dropped 30 pounds but the pain some days continues to be unbearable. Starting to get frustrated.

Jump to this post

Hello @croller68,

Welcome to Connect. I’m so sorry to hear about your diagnosis, and glad that you’ve joined us on Connect; thanks for sharing your history.

Here is some information from Mayo Clinic, which you might find helpful:
http://mayocl.in/2pCvLAP
I’m tagging @billymac65 @k2aunt @danrofohio @mardellepoff @bertbiz @vdouglas @dennis127 @denia @doron with the hope that they will share their journey and experiences in dealing with mesenteric panniculitis.

@croller68, Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report; have you considered getting an opinion from there? How are you managing the pain at present?

REPLY

Thanks for the reply. Pain is managed with Tylenol. Today I am having a pain in my right upper quadrant so will need to take T3

REPLY

I sent a post yesterday. Not sure if my MP is autoimmune. I do have an enlarged spleen, my mesenteric (small intestine core)lymph nodes were enlarged but since my diagnosois I have been taking an anti inflammatory. The pain is usually in my mid section but can be in my spleen area or in my right liver area since I have hypo attenutatinging lesions on my liver. Nausea is intermittent with loss of appetite due to hyersensitive smell.
After 5 months south in Mexico my enhanced CT scan showed reduced lymph nodes but liver and spleen remain the same. I take Aleve twice a day for inflammation and pain.I live in western Canada. My family doctor doesn’t really understand it so isn’t willing to try prednisone. I am in limbo for now.

REPLY

Hello @rpkelderman,

I’d like to welcome you to Connect, and thank you so much for sharing your experiences.

There is a recent discussion about enlarged spleen (although it is in the Cancer group) that might interest you; you can view it by clicking on this link: http://mayocl.in/2r7LRDC
And here is some information about the same from Mayo Clinic: http://mayocl.in/2q8Ik9L

@rpkelderman, may I ask why you aren’t sure about the MP being autoimmune? Do you have any questions about the lesions on your liver?

Liked by missisays7

REPLY
@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

Jump to this post

Hi Lisa-I’m interested in any group that might be able to offer suggestions-have MP. Diagnosed about 17 years ago. I live very far north, in an area with really no support. So all info welcome!!

REPLY

Hello Mr Bill. I am thrilled with this discussion group. I’ve been reading posts and found much info. I was diagnosed about 17 +- years ago at a University Hospital. But they felt I had the condition from about age 8. I’m 67 now and have been through many episodes. I live in the far north, no one knows about MP here. Just hearing of others experiences sadly does my heart good. I am not alone!! Please continue adding info, references and sharing!! Thank you!

REPLY

We are all in the same boat, and there is definitely some solace to be found in knowing you are not alone! I hope the diagnosis helped explain a lot of the “mystery” symptoms that must have puzzled both you and your doctor(s)! Having dealt with MP for 17 long years, do you have any recommendations as to what diets or treatments have worked for you? Nice to have everyone’s support on here…it really prevents despair from rearing its ugly head!

REPLY
@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

Jump to this post

Hi pc, I’ll send you a email on here. For some reason though, I don’t have a link to get my emails responses last couple weeks. I’ll send you the j fo to reach me though in the private email. We have 356 members
Lisa

REPLY
@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

Jump to this post

Hi Lisa,
I sent you a private message in response to your query to me regarding this technical issue. Can you send me a message using this form https://connect.mayoclinic.org/contact-a-community-moderator/. We’ll get the issue sorted out for you. 🙂

REPLY
@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

Jump to this post

Hi @pcfromfm, there are several members who participate in both Lisa’s Facebook group and here on Connect. I’d like to introduce you to several other Connect members who live with MP. Please meet @vdouglas @warlick @viva @bakb @missisays7 @doron @billymac65 @croller68 to name a few.

Your having lived with MP for over 17 years, I’m confident that you have a lot to offer. For example @billindc asks “do you have any recommendations as to what diets or treatments have worked for you?”

REPLY

I was diagnosed with MP last Thursday after a CT scan. Currently waiting on an appointment with the surgeon to confirm whether or not I actual have MP.

REPLY
@rips72

I was diagnosed with MP last Thursday after a CT scan. Currently waiting on an appointment with the surgeon to confirm whether or not I actual have MP.

Jump to this post

Hope your experience with surgeon and diagnosis goes well. I have been identified with the condition several times in last 3.5 years on CT. I have read in recent reports that biopsy is not always necessary for diagnosis. I’m getting biopsy soon. There is a MP group on fb if your not in it already and would like to join a lady will be inviting you most likely.:)

REPLY
@rips72

I was diagnosed with MP last Thursday after a CT scan. Currently waiting on an appointment with the surgeon to confirm whether or not I actual have MP.

Jump to this post

I don’t use fb, my wife however is on it mainly to keep up with the kids and grand kids. I’m still waiting on the appointment with a surgeon, but have already started on the diet recommended for MP and it seems to be helping. Also, I tried making an appointment at the Mayo Clinic in Scottsdale since there is a Dr at the Mayo Clinic in MN who has done extensive research on MP, and I thought they could tap into his information, but they would not give me an appointment because I have government medical insurance (Medicare and Tricare).

REPLY

What type of diet did they suggest for you? No one I’ve seen can help me with diet.

REPLY
@susierq111

What type of diet did they suggest for you? No one I’ve seen can help me with diet.

Jump to this post

No one actually suggested the diet, I just researched it myself and discussed it with my daughter who is a Registered Nurse. The diet is basically the one for IBS, and is called FODMAP. I found the diet at IBSDiets.org. It is very similar to an Atkins diet. As an example, I had fried eggs and ham for breakfast, with no potatoes or bread. I didn’t eat lunch (which is not recommended) and had a hamburger steak with tomatoes, and a small salad with Italian dressing for supper. So far I have been able to eat these meals with far less pain in my right side. However, I just started it 5 days ago, and will update everyone after being on for a few weeks. One big benefit is that I might even drop a few pounds!

REPLY
Please login or register to post a reply.