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

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

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Hi, it certainly does help chatting to others who are going through the same trials. I had 2 CT scans and lots of blood tests. Then I was told that a biopsy was definitely needed to confirm MP and eliminate anything else nasty. Eg lymphoma . I had key hole and while doing the biopsy the surgeon checked my internals pretty well. I don’t know about CgA. They tell me MP is not a fatal disease, it’s an inflammation of the messentry….An immune disease, they don’t know much about. I continue to have regular blood tests. I have only been guided by the doctors from the beginning, even though they are limited in knowledge.
You said the ‘risks outweigh the benefit ‘ so not sure what your doctor is thinking in this regard. 🙏

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Hi Di, hope you're hanging in there ok. This is such a cruel condition/disease. It's rarity makes it simply impossible to treat effectively. Due to pre-existing medical conditions, as well as a few brand spanking new ones, my PCP won't prescribe me Prednisone. It's an awful drug, but it does it's job most of the time. However, I'm not convinced it does much for MP. Currently, I'm only being treated for the nasty symptoms of MP. Pepcid, Bentyl, and Percocet. Instead of taking meds for nausea, I graze and tough it out. My current goal is to manage the pain enough to live as normally as possible. I've only been diagnosed since the end of January, but already resent the impact MP has had on my life. I'm holding out hope that I can get into Shands Hospital (a teaching hospital much like the Mayo Clinic) in North Florida soon. My newly discovered brain aneurysm has a recently tried to steal the spotlight from MP, and made me into a pain-in-the-ass patient with a little ticking time bomb in her head. Thankfully, my neurosurgeon understands the importance of getting the MP treated asap. I'm waiting for insurance and the hospital to approve the surgery on my little bomb, as it's so new that it's never been performed in this hospital before. So, I'm hoping to get to Shands for the MP in the interim. I'll gladly share how the specialist there goes about treating MP, once I get there. 😊 You hang in there. And remember, advocate for yourself!

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Hi Dinyo…..I was only on the steroids for 4 mths taking about 40 mg per day, then had to slowly come off because of my low calcium levels, as I mentioned earlier. Understandably seeing your mother on it for so long, has concerns for you, and I’m sure it must have been hard to watch someone you love go through those side effects. It was hard for you.
I believe short term though, is not so bad……. prednisode is an anti inflammatory drug , but don’t know of any other for an alternative. Sorry. Wishing you all the best 🙏

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I think we all understand how you are feeling about Prednisone and it's side effects. I now have osteoporosis and have to get a shot (Prolia) every six months. I'm also having a terrible time weaning down off of Prednisone. I started at 40 mg. and have been trying to wean down for well over a year. I actually got down to 1 mg., which was a big tease because I relapsed and basically had to start over. Last week, my dosage was upped from 3 mg. to 5 mg. because I was beginning to relapse again, and I have been told to stay on this dosage until I have been in remission for 4-6 weeks before we begin to fiddle with daily dosage amounts again. I'm also on 200 mg. of azathioprine and 20 mg. of tamoxifen daily. I am also on CBD oil as well. For nausea, I take Ondansetron (4 mg.) as needed. Also, as needed for pain, I am on oxycodone and a different pill in the family called Targin (I'm from Canada, so this might be a different name for my American cousins!) which is a slow release milder pill that has an anti constipating agent in it, I believe. This bout has been very difficult and I have been battling this relapse since August 2017. I wanted you to know all of the meds that I am currently taking, so that you may discuss options with your doctor and I hope that this information will be helpful. I have learned that this disease presents itself differently for all of us, but there are many similarities for sure! I experience good and bad days and am noticing that the weather (April and November are typically tough months!) and stress (or upset) are major factors in my pain level. Some people notice that a change of diet can be helpful as well. I hope this info helps you. You are definitely not alone.

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I think most of us seem strong because we have been living with this diagnosis for a while. Someone on this site recommended a book titled, How To Be Sick by Toni Bernhard. This book helped me beyond belief! It comes from a Buddhist perspective and though I am not Buddhist, this book was written to appeal to anyone. Like you, I had to alter my mindset and concentrate on what I am able to do (though that may differ daily depending on my symptoms) rather than what I can no longer do. I also had to learn to limit my exposure to stressful situations and that was toughest on me because I had to learn to say 'no' or distance myself at stressful times. lol…I'm still working on that….

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