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 was the same way when I relapsed because it has taken so long to bounce back….if ever….so I have started reading again and I also began painting. This 'expansion' of myself has allowed me to put some value on what I am able to do and also provides me with something to focus on besides my physical health!

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Thanks Di, Yes we can all support each other which is wonderful. I also like the comments about refocusing on other things, like reading, painting etc. I love to garden and Autumn is a beautiful time of the year to be out and about, with trees turning all sorts of shades of reds, oranges and yellows. I limit myself though, and can't do what I used to, but still enjoy this wonderful pastime of pottering around, cutting back , mulching and even weeding. Yes, we can't let this condition get on top of us, we need to be always thankful for what we have and what we can still do. Prayers for you.

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Hi Di, I don’t know about the fibrosis as your dr said. My MP is an inflammation of the messentry (that’s the fatty part that holds the bowel together). I am just on tomoxefen, now, as I said before and I think this is a cancer preventative. They often give this drug to women who have had breast cancer. I continue to have blood tests and a CT scan every year or 2. I have been told that this condition MP, can just go away! I’m hoping and praying for this. Try not to get stressed, less of that is better. Don’t overdo exercise and try and eat well, cutting out the fatty foods. 🙏 ps I have also been recording what food I eat each day since January. Just to see if anything triggers…..but nothing is jumping out as beng detrimental……..(and really , certain food should not really make things worse, as MP is on the outside of the bowel. )

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Hope I am helpful with my story. I have posted before but probably newbies have not seen it. After
many years of symptoms and area gastro and surgeons failing to know what my symptoms could really mean I consulted Mayo Clinic. Even after a CT scan at ER in my Home area, doctors failed to make the connection that an enlarged lymph node in the mesentery which indicated need for biopsy might be something more serious. And all the doctors telling me it was impossible to get to that location to do a biopsy. But it was possible at Mayo Clinic. Turns out my case was Stage IIIB, MENS1, neuroendocrine Carcinoid Cancer. Only found through an exploratory. Three feet of small bowel, 12 tumors and 13 lymph nodes removed. Follow-up every six months bloodwork and yearly scan now at Dana Farber. Had Octreoscan, also Gallium-68 scan now available in America since 2016 previously only in Germany and I believe Switzerland (please google to fact check me). So far cancer free since July 2016. I, too, had nausea, 25 pound weight loss, painful abdominal and back pain, diarrhea. Finally pursued best care ever at Mayo Clinic. They saved my life.

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Hello everyone. After years of random symptoms on and off, a doctor finally decided to to Physical examination of my abdomen, sent me for a CT scan which revealed MP. Apparently I presented as someone with diastasis recti in the upper abdomen.
I am waiting on a chat with a gastroenterologist in 3 weeks and don't know what the future holds.
I also have an uncommon adipose disorder called lipoedema which causes inflammation and pain.
Ì would be happy to interact with this group as I feel very alone with this. I live in rural Queensland Australia where there is the Aussie pervading She'll be right mate" attitude.
I have symptoms which are getting worse right now which my doctor believes aren't related to MP.
My upper abdomen in very distended and painful when pressed. I get niggly pain down the right side at random times, but a lot of pain across the middle back.
Sometimes I feel queasy, though not nauseous and have recently experienced a bit of heartburn in the evenings.
I'm also fatigued ALL the time and sometimes find it hard to catch my breath. Today I'm at our local markets, sorting to write this post, as my head is fuzzy, affecting my walking.
I have had a lot of bariatric procedures over the past 20 years, and sometimes I feel some pressure on the back of my larynx when lying or bending over.
I am keen to join the facebook group of its still operational a there's not much support out here.
Thanks for reading.
Blessings.
Sheryle🦋🌻

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@shez61

Hello everyone. After years of random symptoms on and off, a doctor finally decided to to Physical examination of my abdomen, sent me for a CT scan which revealed MP. Apparently I presented as someone with diastasis recti in the upper abdomen.
I am waiting on a chat with a gastroenterologist in 3 weeks and don't know what the future holds.
I also have an uncommon adipose disorder called lipoedema which causes inflammation and pain.
Ì would be happy to interact with this group as I feel very alone with this. I live in rural Queensland Australia where there is the Aussie pervading She'll be right mate" attitude.
I have symptoms which are getting worse right now which my doctor believes aren't related to MP.
My upper abdomen in very distended and painful when pressed. I get niggly pain down the right side at random times, but a lot of pain across the middle back.
Sometimes I feel queasy, though not nauseous and have recently experienced a bit of heartburn in the evenings.
I'm also fatigued ALL the time and sometimes find it hard to catch my breath. Today I'm at our local markets, sorting to write this post, as my head is fuzzy, affecting my walking.
I have had a lot of bariatric procedures over the past 20 years, and sometimes I feel some pressure on the back of my larynx when lying or bending over.
I am keen to join the facebook group of its still operational a there's not much support out here.
Thanks for reading.
Blessings.
Sheryle🦋🌻

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Forgot to mention that I've had IBS type symptoms for years which took a turn for the worse in 2015, embarrassingly resulting in chronic diarrhoea and an incontinent bowel sometimes through the night, and a couple of times at work. Thankfully that side of things has settled somewhat, though still problemsome.

Liked by dementorshoes

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Hello, everyone. Sorry to hear so many struggling with MP. Just recently diagnosed. Still doing blood tests, lymph node biopsy, etc., etc.
Question: Does anyone experience migraine type headaches when the abdominal pain intensifies? Greatly appreciate everyone's sharing. Thank you.

Liked by dementorshoes

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@lfrwbr

Hello, everyone. Sorry to hear so many struggling with MP. Just recently diagnosed. Still doing blood tests, lymph node biopsy, etc., etc.
Question: Does anyone experience migraine type headaches when the abdominal pain intensifies? Greatly appreciate everyone's sharing. Thank you.

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I would have flu like symptoms when my pain and cramps are bad. Yes a little headache, but not migraine. Look after yourself and don’t overdo it.

Liked by dementorshoes

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Hi kids. Hope everyone is hanging in there. Fresh out of my last hospital stay. Not to sound melodramatic, but I've honestly lost count of how many stays I've had since diagnosed with MP in January. Let's say I've been more in than out. They, of course, don't know what to do other than manage pain and other symptoms. I've shared before that I 'graze' eat to control the nausea. It no longer does, so I'm taking Zofran around the clock. Pisses me off. Suffered a bad bout of pancreatitis, had to be courtesy of MP. I wanted to share that I've been on Protonix, with awesome results. Heartburn is gone. Back on another short round of steroids, but it will end once my PCP has his say. I've graduated to Morphine PO, with Percocet for breakthrough pain, and I resent having to take them them both. I'm waiting on authorization for the cerebral angiogram on my aneurysm (My nice, quiet, killer problem that should take the limelight from the MP, but doesn't.). Ok, I'm done whinning. Try out Protonix, my friends. And hang in there everybody.

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Hello everyone. Is the facebook group still active? I have messaged Lisa via her link to her FB profile and am awaiting a reply. I understand that she is probably a busy lady, and not on Facebook all the time.
Do any of you have back pain, and how do you manage it? I'm just taking panadol osteo, and sometimes panadeine forte. As I'm only newly diagnosed and still have to wait 2 weeks to see a specialist, I'm not sure how best to manage. Thank you😊

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@shez61

Hello everyone. Is the facebook group still active? I have messaged Lisa via her link to her FB profile and am awaiting a reply. I understand that she is probably a busy lady, and not on Facebook all the time.
Do any of you have back pain, and how do you manage it? I'm just taking panadol osteo, and sometimes panadeine forte. As I'm only newly diagnosed and still have to wait 2 weeks to see a specialist, I'm not sure how best to manage. Thank you😊

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Yes, when my MP was active I had horrible back pain directly related to MP.

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Write a one page letter to Dr Pardi or Dr Alexander at Mayo Clinic Gastro Dept in Rochester, MN. Explain your symptoms and pain level, and state what tests you have had and what doctors you have seen and results or non results. Ask for an appointment. You will be contacted with an appointment followed by a schedule for bloodwork, scans, consults. Expect to spend 10 days. They are very thorough. I consented to an exploratory and was diagnosed with Carcinoid Cancer. My MP was a symptom of that underlying rare cancer which local surgeons and specialists were never experienced to know what to look for. Book a flight on Delta Mayo. Stay at hotel right across from Mayo bldg. Mayo will send you a list of places to stay. Good luck.

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Well I am pleased to say that I heard from Lisa and she said there are about 20 in the group from Australia!!! Hopefully I will be able to learn a lot more about this disease. I have been feeling rather off for a couple of days with a lot of pain in the back and the sides. Had a concerned friend ask what was wrong with me today. I haven't told anyone. She is very astute. I experienced what I would call flu-like symptoms yesterday, and major headache today, though not what I would call a migraine. Waiting for my first app't with the GI doctor has felt like an eternity, and I still have a week to wait. I will be writing out my concerns and questions for him. I applied for a job just before this diagnosis and actually have an interview this Friday. Great news but praying I am going to have a good day so I appear bright and enthusiastic. It is casual but I've wanted a job for the longest time.
Blessings to everyone on this page <3

Liked by dinayo

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This site has been fantastic support for me so I want to add my story.
I was diagnosed with Mesenteric Paniculitus and slight lymph node swelling 2 years ago by CT scan after 6 months of tortuous nausea, burping, gas, abdominal pain/bulging and heart skipping beats when lying down. Also bouts of curl up and die general fatigue/sickness. Couldn’t walk 50 metres. My body felt like I had the flue without the sore throat and headache. No diahorea.
After admitting myself to ER (had to put pain level up near 10 to get action). They did tests but they recommended go to GP to get the CT as hospital hasn’t CT.
In this 6 months before diagnosis, the gastro specialist and doctor did the usual gastroscopy, colonoscopy, scanning abdomen with ultrasound and such – I was diagnosed with heliobacter from gastroscopy and got that eradicated by antibiotics. My heartburn gone – good.
After diagnosis of MP the gastro specialist and doctor didn t know much as there is no protocol to follow for MP. They never see this condition much. Its only by begging for something that the specialist prescribed prednisone. Started 25mg and taper over 10 day. Nausea and fatigue and general malaise lifted. But relapse after 2 weeks off prednisone.
Had to up to 37 mg and taper over 4 weeks and would get 6-8 weeks of normal life until relapse. This regime continued for 2 years. Tried colchicine and meloxicam to wean off prednisone (self prescribed – its in the literature – doctors knew nothing- don’t they read?) But these meds only helped relieve symptoms somewhat. Subsequent CT scan 6 months after initial scan showed MP going and lymp nodes ok. But symptoms still the same. Symptoms manageable – sort of – I noticed that I had to be careful of bending or squeezing abdomen ( eg weeding garden or playing guitar) as this brought on bad symptoms again for 2 weeks or so. Also no late night eating as my stomach wouldn’t empty and got awful pain and bloating. I think some foods set symptoms off also.
What caused this MP? No indications from doctors tests etc but my history leading up to this was that one month prior to first symptoms I had a stroke. Research indicates gut bacteria escape gut after stroke and can cause problems with immune system(nodes in abdomen?). Also previous one month prior I had a very bad case of gastro for 10 days from overseas living in Vietnam. I know I ate something bad haha. Also one month prior to stroke I had a tetanus shot. And the evening before stroke I had the 3 in one hooping cough vaccine (tetanus, diphtheria, hooping cough) Needed the vaccine to visit my premi granddaughter- Were these previous events coincidence or a confluence of events that set it off ? Doctors never gave an opinion on vaccines or these prior events as a cause of MP.
This is the crazy thing. Good news. Just recently I had shingles (doctors say it was from being on prednisone) The doctor initially recommended endep for the pain of shingles but I refused as it makes me incredibly drowsy. He prescribed pregabalin as the next in line med in the protocol. Well it didn’t decrease any pain of shingles but pregabalin took the pain and nausea of MP away and has allowed me to wean off prednisone. I have been off it for 6 weeks and soreness in abdomen virtually gone and I usually have intense nausea 1 hour after eating but that’s all gone. Sort of feel normal.

I hope this continues for me and I hope someone gets something from my story.

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Thanks for sharing. All of our cases may be a little different than one another, but there are always similarities. Funny about the shingles. I've been getting the vaccine to prevent getting shingles due to prolonged dosage of prednisone (since August 2017). I am also having a very difficult time weaning off prednisone, relapsing time and again. My new regimen is to stay on 5 mg. daily until I have reached full remission for 4-6 weeks. After that, we will try to wean down off the prednisone. It really is disheartening to be continually relapsing. Maybe some people just have a harder time weaning off prednisone than others?

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