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 had an adrenalectomy due to a benign growth september 2018, I presented with stabbing like pains in the front left flank, ct scan showed the tumour. I though aha! My pain has a reason. Off I trotted to get it removed, success. But,one year on, the pain is STILL there, my doctor said it’s healing pain.. I called it BS, so demanded another CT scan, Mesenteric Panniculitis diagnosis. I WAS RIGHT, something WAS wrong!. Referred back to surgeon, now on Category 2 wait list, all he needs to do is prescribe me the correct meds so I can breathe comfortably and not feel like I have to constantly stretch my left side out… in my mind, I think it helps, but really, nothing does, no amount of stretching this way or that! but, I know, there’s procedures I must jump through hoops….. so, for now, I take whatever pain relief I can find. CBD oil, but not seeing a change, but its only been a few weeks…. hurry ups dr! Im in australia.

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@kimh

That's good to know. I will let you know what I am on and leave it to your research skills lol. For the inflammation: Prednisone 5 mg. (I started out at 40 mg.), Tamoxifen 20 mg and Azathioprine 200 mg. (I have to get my blood tested because of this drug, I believe). For pain: Targin 5 mg and for breakthrough pain: Oxycodone. I have huge problems with sleep (the main suspect is the Prednisone), so I am also on a drop (0.2 mg) of THC before going to bed at night. I hope this helps!

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Prednisone, its a sleep killer, take it as soon as you wake, that is if you get to sleep at all. I find it makes you extremely productive.

Liked by walisky

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@ritaz1964

I had an adrenalectomy due to a benign growth september 2018, I presented with stabbing like pains in the front left flank, ct scan showed the tumour. I though aha! My pain has a reason. Off I trotted to get it removed, success. But,one year on, the pain is STILL there, my doctor said it’s healing pain.. I called it BS, so demanded another CT scan, Mesenteric Panniculitis diagnosis. I WAS RIGHT, something WAS wrong!. Referred back to surgeon, now on Category 2 wait list, all he needs to do is prescribe me the correct meds so I can breathe comfortably and not feel like I have to constantly stretch my left side out… in my mind, I think it helps, but really, nothing does, no amount of stretching this way or that! but, I know, there’s procedures I must jump through hoops….. so, for now, I take whatever pain relief I can find. CBD oil, but not seeing a change, but its only been a few weeks…. hurry ups dr! Im in australia.

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Edited to add: previous abdo surgeries- ceasarean x 2, 2001 & 2007, gastric sleeve (2015). This pain started July 2018 and hasn’t left!

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I was diagnosed two days ago. I was in a great deal of pain on my left side. The ER took a CT and diagnosed me then with MP. I have basically have had nothing but broth and some rice for the past two days. They put me on Meloxicam 15 mg. I need to follow up with my physician. What other foods do you think are ok for me until then? I seem to be having a lot of gas with this too. Is that normal?

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@charread

I was diagnosed two days ago. I was in a great deal of pain on my left side. The ER took a CT and diagnosed me then with MP. I have basically have had nothing but broth and some rice for the past two days. They put me on Meloxicam 15 mg. I need to follow up with my physician. What other foods do you think are ok for me until then? I seem to be having a lot of gas with this too. Is that normal?

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I have IBS, so gas is the norm…. meloxicam works fast. I used it for my tennis elbow pain… but if MP causes gas, Ive got it in spades!

Liked by charread

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@ritaz1964

Prednisone, its a sleep killer, take it as soon as you wake, that is if you get to sleep at all. I find it makes you extremely productive.

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THC oil helps with the sleeplessness!

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I am now healing from major surgery. They tried to take a biopsy by lapro but couldn’t find it. Opened me up to find the mass and check for other underlying conditions. Diverticulitis was found. Nothing else but the small mass. If this becomes inflamed what am I looking at for symptoms? Mine was found by a CT Scan. I understand the experts are at Mayo. PS I went in because of IBS pain on my left side but the mass is on the right. My pain is a 10 on the 1-10 scale.

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@ritaz1964

I have IBS, so gas is the norm…. meloxicam works fast. I used it for my tennis elbow pain… but if MP causes gas, Ive got it in spades!

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Have you looked into changes in your diet? I went to gluten free and feel so much better. No gas.

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@jimmymac

My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

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My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.

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@ghennel

My daughter has had similar GI problems for years. She is still undiagnosed. I started going on these groups to do research and get info. When she was a teen she had lymphatic malformations which they surgically removed. There was inflammation in mesentery at the time. So they found it, but they did not diagnose her properly and had no idea what the real problem was. They thought the surgery would cure her and 10 years later she still has pain and horrible GI problems. We are at a loss just finding a doctor to diagnose her properly. I am pretty sure she has mesenteric panniculitis since what she had in her teen years is tied in with this type of disorder. Now to hear that even if we can get her diagnosed there really isn't treatment is very frustrating. The healthcare plan she has limits her ability to find a quality doctor who could diagnose her, much less treat her. They too told her to go to a psychiatrist and wanted to put her on an antidepressant. I feel for you and I hope you are able to find help.

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Welcome @ghennel, many of us have had similar experiences. But we -together-have been able to aid each other with important foods/diets to try and medicines that help. Mayo clinic has been a great help to others who have been able to take advantage of it. Ask lots of questions on the site, share your experiences and those of your daughter. Many choices help, cut back on all the stress you can, change your life to get more rest -as much as you can – and try some other suggestions on diet and medications. Best of luck -stick with us!❤️

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@carbxbe8206

Douglas, Thank you for the response trying to get into my GI doctor. The last few day have been very rough for me severe nerve pain all over and digestive issues. Can’t take steroids afraid they will activate my Valley Fever, maybe I will have to make a choice on which is worse? I seem to contact all the rare crazy diseases. Taking one day at a time, and keeping a positive outlook. Have been going to Stanford Medical may have to switch to Mayo if my insurance will cover it? Have a great night!

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If you don’t mind me asking, where are you geographically located? I see your reference to Valley Fever. I am from Central CA and looking for a specialist to treat My newly diagnosed MP

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@brandya777

Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!

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Umm….welcome to the club?!?! I was diagnosed with MP in 2014 after a bad fall on black ice. After being put on Prednisone for 6 months (that medication has it's own evils!), I went into remission until August 2017. Since August, I have been on Prednisone and Azathioprine (to settle my immune system down) and tamoxifen. I have definitely been battling to get back to remission, but it has been a tough road. Are you feeling any symptoms?

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@kimh

Umm….welcome to the club?!?! I was diagnosed with MP in 2014 after a bad fall on black ice. After being put on Prednisone for 6 months (that medication has it's own evils!), I went into remission until August 2017. Since August, I have been on Prednisone and Azathioprine (to settle my immune system down) and tamoxifen. I have definitely been battling to get back to remission, but it has been a tough road. Are you feeling any symptoms?

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Last Sunday I was diagnosed with Mesenteric Panniculitis and a supraumbilical midline hernia through CT scan! The ER doctor had to use Google to tell me what I had because nobody in the hospital has ever heard of it! So all I've been doing is reading up on it but still don't know what to do! The ER Dr told me I need a HUGE diet change from what she read. I've been complaining about stomach pain for so long with my Dr and told him I though I had a hernia and all he did was just give me meds for ulcers. I throw up all the time, I'm constantly so so bloated, I can't eat very much because I get full so fast or food makes me feel nauseated. It's been a rough road so far for so very long 😣

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@brandya777

Anybody on here know anything about Mesenteric Panniculitis! I just got a CT Scan diagnosis and not my Dr or anyone knows anything to tell me! Please help!

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Well, I don't know what diet you are on, so I can not comment. Personally, I limit carbs and spicy food and I seldom eat out, so fast food is almost non existent for me. I'm not sure that my diet makes any difference, except for maybe tolerating the Prednisone. I hope this helps!

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@lisas444

Hi there, saw your posts on here about SM and MP. We have a support group with 57 members if you’re interested. It’s a private group to be able to share, support, receive support, doc info, meds, etc. I’m a mom with a pediatric kid with SM. If you write back I can give you the contact info if you’d like. No, it’s not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours!

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Can you please send me the group info?!?!? I was just diagnosed a week ago 😔

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