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

@mp333

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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Your story is enlightening as to results after each medical event. I pray you remain well. My MP story led me to Mayo Clinic where an exploratory revealed Stage III B Carcinoid (neuroendocrine) small bowel cancer which was surgically removed. After many years dealing with local doctors unfamiliar with MP, the doctors at Mayo Clinic in Rochester, MN knew what to look for. In my case, MP was a symptom of an underlying disease. I urge anyone with painful chronic MP to pursue a Mayo Clinic consult.

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@kimh

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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Yes thats what I was also trying to do: to get to a lowest dose prednisone as possible to modulate the immune system response. At first I thought 12mg then I tried 5mg but always 2-4 weeks later relapse.
My take on MP is that it is an immune response to something, and then should naturally go away but becomes autoimmune as the immune system/mesentery or underlying condition doesnt settle or be removed. Therefore prednisone provides immune modulatory therapy. Pregabalin also has shown an immune modulatory effect – its in the literature. I would suggest discussing using pregabalin with your doctor maybe. Pregabalin is also used for anxiety and seems to have none or little side effects as opposed to prednisone.

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@musicflowers4u

Your story is enlightening as to results after each medical event. I pray you remain well. My MP story led me to Mayo Clinic where an exploratory revealed Stage III B Carcinoid (neuroendocrine) small bowel cancer which was surgically removed. After many years dealing with local doctors unfamiliar with MP, the doctors at Mayo Clinic in Rochester, MN knew what to look for. In my case, MP was a symptom of an underlying disease. I urge anyone with painful chronic MP to pursue a Mayo Clinic consult.

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I would have loved to visit Mayo but I am in Australia hihi

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@mp333

I would have loved to visit Mayo but I am in Australia hihi

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Most informative site:
rarediseases.org/rare-diseases/mesenteric-panniculitis/
From my experience in relieving symptoms temporarily I used an elec heat pad on my abdomen. Cold pack also relieved symptoms but not as convenient as heat pad.

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Pycnogenol with a R by the name, Berbine. and Bromelain for the gut and other issues. AHCC shark liver sold by Life Extention, Country Life and ImmPower sold buy Harmony Company for immune health. Look on Amazon or a health food store. "The Truth" Dr. Fred Pescatore

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Hi, at Mayo Clinic, they expected to find lymphoma but admit they are sometimes surprised as in my case which turned out to be a rare cancer called Carcinoid, a neuroendocrine disease.

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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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I too pass out. Currently at heart doctor. Everything looks good on his end. Will probably get a device inserted into my chest to monitor it at all times, to see what goes on when I pass out. I have no warning that it is going to happen either, just wake up on the ground in pain

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Does anyone know of any ny doctors who can treat this?

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I finally took my situation into my own hands and decided to reach out to Mayo to try to get in to see a GI doc there. I have an appointment in late Oct. I am looking for any advice about what to expect. I do not know what doc I will see yet, but am in the process of getting my imaging and notes from my GI doc here to bring with me. I would appreciate any and all advice. Thanks in advance!

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Hello @jarnold246

Congratulations on advocating for yourself and also for getting an appointment at Mayo. You were asking about what to expect during your appointment. I would like to introduce you to some Members of Connect who do visit Mayo for their treatment. Please meet @jenniferhunter, @windwalker and @johnbishop, just to name a few.

Here is a link from Mayo's website with some more information about visiting Mayo Clinic, https://www.mayoclinic.org/patient-visitor-guide

Also, here is a link to a Mayo Connect discussion group where folks who have been to Mayo talk about their experiences, https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/

@jarnold246, will you be traveling a distance to get to your Mayo appointment?

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@hopeful33250

Hello @jarnold246

Congratulations on advocating for yourself and also for getting an appointment at Mayo. You were asking about what to expect during your appointment. I would like to introduce you to some Members of Connect who do visit Mayo for their treatment. Please meet @jenniferhunter, @windwalker and @johnbishop, just to name a few.

Here is a link from Mayo's website with some more information about visiting Mayo Clinic, https://www.mayoclinic.org/patient-visitor-guide

Also, here is a link to a Mayo Connect discussion group where folks who have been to Mayo talk about their experiences, https://connect.mayoclinic.org/discussion/need-patients-experience-with-mayo-clinic-is-it-worth-it/

@jarnold246, will you be traveling a distance to get to your Mayo appointment?

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Thank you! I am traveling from St Louis MO. I actually work for a highly ranked academic facility which is why this is so frustrating for me that they can "figure out" what's going on. I was diagnosed with MP last summer via CT but the gi doc I went to said no I dont have the body type for it and looked at the ct and said no he didnt see it. I'm beyond frustrated and really need answers as this is affecting my life. Again thank you and I appreciate any insight!

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@jarnold246

Thank you! I am traveling from St Louis MO. I actually work for a highly ranked academic facility which is why this is so frustrating for me that they can "figure out" what's going on. I was diagnosed with MP last summer via CT but the gi doc I went to said no I dont have the body type for it and looked at the ct and said no he didnt see it. I'm beyond frustrated and really need answers as this is affecting my life. Again thank you and I appreciate any insight!

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@jarnold246 Wishing you well and hope that you find answers! Will you post again?

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@jarnold246

Thanks to @johnbishop and his great memory for discussions, here is a Connect discussion group devoted to visiting a Mayo facility, https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/

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@jarnold246

Thank you! I am traveling from St Louis MO. I actually work for a highly ranked academic facility which is why this is so frustrating for me that they can "figure out" what's going on. I was diagnosed with MP last summer via CT but the gi doc I went to said no I dont have the body type for it and looked at the ct and said no he didnt see it. I'm beyond frustrated and really need answers as this is affecting my life. Again thank you and I appreciate any insight!

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Morning @jarnold246-welcome to our group. I’m unsure what “body type” he is referring to and how that can change what was on a CT-? I’ve been diagnosed for many years now and have had a few remissions. But can relapse at anytime. Are you on medication(s)-I May have missed your previous discussions. Are you on a special diet? What symptoms do you usually have? I have found on a day-to-day basis that if I watch my diet, get extra rest and keep stress low, then I am able to enjoy life without extreme medications I need in a flare up. I hope you get help❤️

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