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 group.

Susan, Here is my e-mail address
Janine Jagger

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I think I got past the filter, many thanks

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Welcome back to Connect @sante! A sincere thank you for all the support and information you are offering; I’m sure that @susierq111 appreciates it as well.

You will both notice that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam. trolls, etc. We recommend sharing personal contact information by private message, as it is a secure, private option.

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@sante, you’ll notice that Connect has been reinvigorated and is an active community again. And, we’ve got more updates and improvements coming soon, so do stay tuned; we’re glad to have you back!

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@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

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My husband was diagnosed with mp last September and now found a new doctor who said he needed a blood test to show he truly had this disease. The blood test has come back negative. Now when we were in the hospital for same symptoms they told him he doesnt have it or maybe never did or maybe after being on meds it just wont show. They told him he no longer has diverticulitis or diverticulosis. They are trying to tell him they think he has severe ibs but are doing nothing to help.

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@danrofohio

Dot,

Thank you for starting this. Right now, I am very discouraged because of my experience with mesenteric panniculitis. I was diagnosed in March of 2011 when excruciating abdominal pain caused me to vomit repeatedly, and I went to the emergency room at my local hospital. I had been having pain from the panniculitis for months or years, but I just ignored it until it became unbearable. A the ER called in a surgeon, because they were afraid of an aortic aneurysm. He order a CT scan and whoever read that made the diagnosis which the surgeon confirmed with endoscopic surgery.

The surgeon treated me for the next three months by starting me on a course of prednisone (40mg for a month, then 30, etc.). After the first month, my symptoms were bearable, and a follow up CT scan showed the mass to be smaller. However, subsequent scans showed no improvement, and my symptoms did not improve either. So the surgeon said that I needed to go on to a research hospital, and I chose on four hours away because their rheumatology and GI departments were rated as one of the best in the country.

On my first visit to the research hospital, I saw a gastroentoligist and a rheumatologist separately. The GI wanted me to see an oncologist which I did, and the rheumatologist presecribed azathioprine (Immuran) while continuing the predinsone. The oncologist didn’t find anything, and after making some adjustments with a very slow taper off the prednisone, my symptoms when away. I was virtually symptom free for eight months and had hopes of being cured and being able to go off the azathioprine.

Then about six or so weeks ago, the the symptoms came back. At first they were mild and rare. Now they occur multiple times per day and are very painful. Meanwhile, I needed to prepare for my next follow up with the rheumatologist at the research hospital in January. I was supposed to call the oncologist and ask him if I should get another CT scan. I did that about four weeks ago and left a message with his admin assistant. The office never returned the call, so I called back about two weeks later, and the assistant said she was going to call me that day, because the oncologist wanted her to ask me if I had CT scan recently. When I told her no, she said she’d pass that information along to the doctor and get back to me in a day. That was almost two weeks ago.

I could call the rheumatologist, but I don’t think he really understands why the panniculits is a problem. Based on our previous discussions, I seriously doubt that he has any idea what else to do to treat this. (He had one previous patient with mesenteric panniculitis, whom he treated with azathioprine.)

I would appreciate any suggestions that anyone has.

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….

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Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

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Good luck and keep us posted. I wish I had an answer for you. My MP comes and goes and I live in fear that someday they will say oh, we are sorry, but it is now cancerous and no chances left for me.

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@susierq111

Good luck and keep us posted. I wish I had an answer for you. My MP comes and goes and I live in fear that someday they will say oh, we are sorry, but it is now cancerous and no chances left for me.

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I have the same fear @susieq 111. One day thats going to be the diagnosis I get from my doctor.

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I too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

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@bakb

I too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

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Hi bakb. We have a private Fb group if you’re interested with 340+ people all across the USA and multiple other countries. Would love to add you if interested. My contact info is in my profile here …My daughter diagnosed used with SM at Getting 14 and has 18 abd surgeries now from result if multiple bowel obstructions from sm. She’s now listing for small bowel and liver transplant due to it. (Loss of 100% colon and all of but approx 18″ small bowel. Been off/on TPN since 2008 and full time last three years. We have varying degrees of the disease in our group from mild to severe and unfortunately have lost five people in the last couple years with SM. Again, for anyone interested,please pm me or contact info on my personal profile. We have others near you could network you with for doc/facility info.

Lisa
Mom of great kiddo with SM diagnosed, age 14
#Rare Disease legislative advocate
#sclerosing Mesenteritis
#nord
#lifeofansmpatient

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@bakb

I too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

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Please add me to your support group. I am 67 yrs, old with mesenteric panniculitis and I had triple negative breast cancer so they hesitate to put me on steroids because of the chance of the cancer returning, I am on probenecid/cochine and niot sure yet how it will work. Flare ups are miserable as you know. Thank you for any aid.

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