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

@lisas444

Great story on Carol. We have a private group as well with 177 members in it all with SM / MP internationally so all your medical, symptoms, meds, etc. aren’t public, etc. and also pairing people up with other’s in their states and/or countries for help with finding docs/facilities to treat SM or MP. Mayo and Dr. Eli at Northshore see the most with SM/MP. 🙂 My name is Lisa Schwart in Tulsa OK on FB if you want to contact me for any more info and adding you over to it! 🙂 Thx! This is a great page as well! 🙂 Lisa

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Hi everyone, I've recently been diagnosed with Mesenteric Panniculitis. I am quite overwhelmed as I know no one else with this issue and no Drs who specialize in this. I would very much love to connect with others. I live in Sacramento, California. Can anyone help? Thank you❤️

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@dinayo

Hi everyone, I've recently been diagnosed with Mesenteric Panniculitis. I am quite overwhelmed as I know no one else with this issue and no Drs who specialize in this. I would very much love to connect with others. I live in Sacramento, California. Can anyone help? Thank you❤️

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Welcome dinayo! You are in the right spot-we are all in this together! I’m from AB Canada and it good to have you with us!

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@dinayo

Hi everyone, I've recently been diagnosed with Mesenteric Panniculitis. I am quite overwhelmed as I know no one else with this issue and no Drs who specialize in this. I would very much love to connect with others. I live in Sacramento, California. Can anyone help? Thank you❤️

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Hello @dynayo,
Consider yourself connected! I have learned a lot on this site from fellow friends with the same rare disease. I am from Canada, but this is quickly becoming an international site! I have been diagnosed (through numerous CT scans and surgical biopsy) since June 2014. I went into remission for a couple of years, but relapsed in August 2017. Are you on any treatment plan?

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@pcfromfm

Welcome dinayo! You are in the right spot-we are all in this together! I’m from AB Canada and it good to have you with us!

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Hello @pcfromfm ,
How have you been doing? This site got a little quiet for awhile!

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@kimh

Hello @pcfromfm ,
How have you been doing? This site got a little quiet for awhile!

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Hi KimH I’m good. Struggle a little with Spring! I love it but it doesn’t love me! A little havoc in the gut but -keep moving, keep smiling! How are you!?

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April is a tough month for sure! I just took some pain medication now! Anyway, I am very slowly weaning off the steroids (story of my life!) and hopefully, I won't relapse again. It is slow going for sure. My doctor has also upped the azathioprine while I wean down on the steroids. I'm hoping that we have found the right 'cocktail' this time. I am also hopeful that April's weather begins to calm down!! Like you, I keep smiling and forever optimistic!

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@kimh

April is a tough month for sure! I just took some pain medication now! Anyway, I am very slowly weaning off the steroids (story of my life!) and hopefully, I won't relapse again. It is slow going for sure. My doctor has also upped the azathioprine while I wean down on the steroids. I'm hoping that we have found the right 'cocktail' this time. I am also hopeful that April's weather begins to calm down!! Like you, I keep smiling and forever optimistic!

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❤️👍😊

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Hey everyone. Hoping y'all are all doing well, or at the very least, hanging in there. Another 2 hospital stays under my belt, but can only partially blame MP, at least I think. Important questions to ask everyone. Has anyone else had an issue with malabsorption? Thanks to the constant nausea, which I try to control by grazing (simply snacking throughout the day instead of 3 full meals and really helps) as opposed to taking meds for it, my appetite is rarely there. Some weight loss and bowel movement issues (stools ranging from watery diarrhea to an oily sludge) are common symptoms. My other question, about that which could possibly be related to the malabsorption, is about fainting or blacking out. Anyone else experiencing anything like this? I've had 3 'episodes' of this occurring with an awesome little laundry list of injuries (a concussion, 2 fractured vertebrae, bruised sternum and ribs, and a spectacular black eye, divided up between the 3 'episodes') to draw the doctors' attention away from MP for a bit and focus it on something they can confidently treat, and actually spell. Y'all might even think I'm making it up, as pitifully gloomy as it will sound, but 2nd fall's MRI confirming concussion and checking for any neck injuries, discovered a brain aneurysm. I wish it were just the plot of a sad Lifetime network movie, but it's true. The aneurysm is large enough to be operable, but one who's dimensions won't be easy to fix with a routine clip or coil (because, like MP, I like the complicated, rare shit). All this added fun, and I insist that MP deserves the focus and I beg for it to be addressed first, assuring the doctors that the abdominal pain from it wins out over everything else. So, a novel later (apologies), I'm hoping y'all can help with any similarities you may have experienced with these 'episodes', and malabsorption. Thanks.

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@dementorshoes

Hey everyone. Hoping y'all are all doing well, or at the very least, hanging in there. Another 2 hospital stays under my belt, but can only partially blame MP, at least I think. Important questions to ask everyone. Has anyone else had an issue with malabsorption? Thanks to the constant nausea, which I try to control by grazing (simply snacking throughout the day instead of 3 full meals and really helps) as opposed to taking meds for it, my appetite is rarely there. Some weight loss and bowel movement issues (stools ranging from watery diarrhea to an oily sludge) are common symptoms. My other question, about that which could possibly be related to the malabsorption, is about fainting or blacking out. Anyone else experiencing anything like this? I've had 3 'episodes' of this occurring with an awesome little laundry list of injuries (a concussion, 2 fractured vertebrae, bruised sternum and ribs, and a spectacular black eye, divided up between the 3 'episodes') to draw the doctors' attention away from MP for a bit and focus it on something they can confidently treat, and actually spell. Y'all might even think I'm making it up, as pitifully gloomy as it will sound, but 2nd fall's MRI confirming concussion and checking for any neck injuries, discovered a brain aneurysm. I wish it were just the plot of a sad Lifetime network movie, but it's true. The aneurysm is large enough to be operable, but one who's dimensions won't be easy to fix with a routine clip or coil (because, like MP, I like the complicated, rare shit). All this added fun, and I insist that MP deserves the focus and I beg for it to be addressed first, assuring the doctors that the abdominal pain from it wins out over everything else. So, a novel later (apologies), I'm hoping y'all can help with any similarities you may have experienced with these 'episodes', and malabsorption. Thanks.

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Morning Dementorshoes! No idea if I have malabsorption issues. Although when I don’t have diarrhea I start to worry😊. So I have taken B’s, and other water-solvable vitamins on an irregular basis for years. Now I also take calcium and D, as well as Mg. So maybe that’s helped. I do have low blood pressure regularly and energy to match. Our bodies and interactions are so complicated, I don’t cross off any “complications”. I sure am hoping your aneurysm is taken care of easily friend, I send all good thoughts. I avoid surgery as much as possible having found my gut does not like anything that stressful. So I’m doubling those good thoughts for you! Please let us know how it goes-? ❤️

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@kimh

Hello @dynayo,
Consider yourself connected! I have learned a lot on this site from fellow friends with the same rare disease. I am from Canada, but this is quickly becoming an international site! I have been diagnosed (through numerous CT scans and surgical biopsy) since June 2014. I went into remission for a couple of years, but relapsed in August 2017. Are you on any treatment plan?

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Hello! My GI wants me to start on prednisone and tamoxifen. I'm worried that they won't do a biopsy to confirm this diagnosis- basing it on my ongoing abdominal pain/symptoms & the "misty" area seen on my MRI. I'm quite terrified about the Prednisone & it's side effects. Can anyone kindly let me know their experience with this drug & if a biopsy is necessary for a definite diagnosis? It's such a wonderful relief to find others in the same boat. Any suggestions/help/advice about the the best way to tackle this would be so welcome! I wish everyone on this board well!

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Hi again! Forgot to ask if anyone else participates on Lisa Schwart's Sclerosing Mesenteritis Facebook community. I requested to join but have yet to hear back. It seems another great place for those with MP.

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Hi I’m a 67 y old woman with MP. Been on prednisone for about 5 mths, early last year. Also still on tomoxefen. Had to come off prednisone because it wasn’t good for my osteoporosis which I found out I had during the process. P makes it worse! Grew a little plumper in the face due to P, but not too bad. When coming off P I had to reduce amount very slowly over 6 weeks, as to not experience bad pain. ( although I had one week of bad hip pain). I am only on tomoxefen now, (although I am having a Prolia injection every 6 mths…this takes calcium from blood and puts it into bones). Generally stomach pain is not too bad…. I try and reduce any stress. Only other medication i take is calcium tablets and vit D prescribed by dr. I am under an gastroenterologist whom I see twice a year. He doesn’t know a real lot about MP. I live in Aussi. All the best, hope this helps.

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@dinayo

Hello! My GI wants me to start on prednisone and tamoxifen. I'm worried that they won't do a biopsy to confirm this diagnosis- basing it on my ongoing abdominal pain/symptoms & the "misty" area seen on my MRI. I'm quite terrified about the Prednisone & it's side effects. Can anyone kindly let me know their experience with this drug & if a biopsy is necessary for a definite diagnosis? It's such a wonderful relief to find others in the same boat. Any suggestions/help/advice about the the best way to tackle this would be so welcome! I wish everyone on this board well!

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Yes a biopsy is the way to confirm MP. I had that.

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@jolied

Yes a biopsy is the way to confirm MP. I had that.

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Thank you. This helps me a lot. I'm a 50 yr old woman in California. The referral for a biopsy, which I asked for to confirm the diagnosis, was denied because "the risks outweighed the benefit". I've asked for a second opinion but don't know if it will help me. My first GI is basing the MP diagnosis on my severe abdominal pain, fatigue, nausea, weight loss, flushing, and my most recent MRI results showing a "misty mesentery". I don't know if I should be insistent on a biopsy or just proceed with the prescribed treatment of prednisone and tomaxafen? Also, are there any tests I need to demand from my GI to rule out any other underlying more dangerous causes such as tumor or other markers? I recently had an elevated CgA level (indicating possible carcinoid tumor) of 149 but that came down to 33. Should I still be concerned about this? My great fear is that my Drs will miss something more serious. I am getting a lot of pushback from my Drs & GI- I live in California & am with Kaiser Hospital- who just want me to quickly accept my diagnosis and start treatment. Based on everyone's experience, should I insist on a biopsy- and is there any less invasion procedures that can confirm one- or should I just start treatment as soon as possible? Thank you, any help/ guidance means the world to me. I feel very, very alone, unsure, and scared in all this. I don't know what to do, ask for, or expect as I begin this journey. I have my next GI appointment in a week to discuss what the next step will be (she wants to start the treatment as soon as possible). Also, is MP a fatal disease? I'm praying and hoping for the best for everyone on this board. What everyone has suffered and gone through is both humbling and inspiring. Much love.❤️

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@pcfromfm

Welcome dinayo! You are in the right spot-we are all in this together! I’m from AB Canada and it good to have you with us!

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Thank you! You have no idea how relieved and happy I am to have found you all. I very much wish you all well. The acceptance and optimism I sense here is comforting and inspiring. 💛

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