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Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

bevie24 | @bevie24 | Mar 16 2:49am
In reply to @jmccord "A radiologist diagnosed me with MP in 2016 after a CT scan. 6 months later I..." + (show)
@jmccord

A radiologist diagnosed me with MP in 2016 after a CT scan. 6 months later I had another CT scan and it was still the same diagnosis. For fear of having a million dollar work up and still no solutions I tried a different approach. I stopped seeing my GI doc and returned to my primary doctor with the idea that my symptoms seem to return with extreme prejudice when I’m stressed or suffering from anxiety. I asked my doctor about trying medication to control my anxiety or stress and I was prescribed a very small dose of generic Prozac. 10mg Just strong enough to take the edge off. It took a few weeks for the drug to work but eventually my MP symptoms which I refer to as “stomach spells” went away. I realize this might not be the answer for everyone. I can only tell you that I found relief from it. I ran out of Prozac last week and my stomach spells returned with a vengeance this evening right before I was to turn in for the night.
So I decided to post my results of the past 6 months online. I plan to return to my primary doc and continue with this approach. My hope is that I don’t develop a tolerance and eventually have to increase my Prozac dosage but coming from a background in Pharmaceuticals my guess is this will probably be the case eventually. Also I started drinking sparkling water for relief. Belching seems to keep my inflammation down and I grew tired, unhealthy and fat drinking sodas. Zero calorie, zero sweetener sparkling water. Exercising works also if you’re not too bloated or inflamed to actually work out. Make the time to exercise your brain and body will thank you. When all else fails I reach for my tum tum tum tums just like tonight. Find something to read online because it’s going to be a long night.

The deal is we have this issue that is rare and hasn’t been solved yet.
All we can do is treat or try and prevent the symptoms from returning until a cure is found.
I can only assume that my MP is A typical because my GI doc performed a scope and colonoscopy and found no evidence of Cancer, Lupus or anything else that could be underlying but only time will tell.
Wishing you all the best of luck learning to live with this. Should anyone have any other ways of treating their symptoms please share. Maybe your way will work for others including myself.

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Hi, I’ve had a frustrating year long journey to my Sclerosing Mesenteritis diagnosis. Finally, a Gastro Dr has agreed to treat me with prednisone & tamoxifen. I am concerned about side effects but praying it helps! My question is if the Prozac continues to help you? Thank you

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fumma | @fumma | Mar 20 12:57pm
In reply to @bacreed "During Covid, I found myself in the ER twice in a great deal of stomach pain...." + (show)
@bacreed

During Covid, I found myself in the ER twice in a great deal of stomach pain. The CT scan showed MP. The GI doctor refused to believe I had it because all my inflammation markers were normal. Fast forward, I continue to have flares and scans show MP.
Overall, I am in excellent health. I am going to add some supplements and tweaks to my diet. What can I expect as far as medication and treatment for this diagnosis.
Thank you in advance,
Barb

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May I ask what were your symptoms? I was just diagnosed on a CT scan that I drank Barrium and got contrast in iv.

Kathy

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1 reply
bevie24 | @bevie24 | Mar 20 7:33pm
In reply to @bacreed "During Covid, I found myself in the ER twice in a great deal of stomach pain...." + (show)
@bacreed

During Covid, I found myself in the ER twice in a great deal of stomach pain. The CT scan showed MP. The GI doctor refused to believe I had it because all my inflammation markers were normal. Fast forward, I continue to have flares and scans show MP.
Overall, I am in excellent health. I am going to add some supplements and tweaks to my diet. What can I expect as far as medication and treatment for this diagnosis.
Thank you in advance,
Barb

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Do you have any updates ? I have had symptoms for over one year. I’ve had mesenteric panniculitis diagnosis with swollen lymph nodes on ct scan. I’ve had all kinds of tests- 4 ct scans, blood work, ultrasounds, gastric emptying studies, stool studies, but multiple gastro drs have refused to treat me. I’ve been offered pain management trigger point abdominal injections, anti depressants, following fodmap diet, etc. Finally, today my dr is ordering prednisone and will follow up with tamoxifen if needed. I’m excited to see if the prednisone works!

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bevie24 | @bevie24 | Mar 20 7:36pm
In reply to @fumma "May I ask what were your symptoms? I was just diagnosed on a CT scan that..." + (show)
@fumma

May I ask what were your symptoms? I was just diagnosed on a CT scan that I drank Barrium and got contrast in iv.

Kathy

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I’m offering my experience.. bloating, pain, distention, nausea, fatigue, depressed, early saity, back & shoulder pain worse after eating, feeling of fullness, feeling of mass in upper abdomen. Bloating makes it difficult to wear my regular clothing

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bevie24 | @bevie24 | Mar 23 2:14am
In reply to @bacreed "During Covid, I found myself in the ER twice in a great deal of stomach pain...." + (show)
@bacreed

During Covid, I found myself in the ER twice in a great deal of stomach pain. The CT scan showed MP. The GI doctor refused to believe I had it because all my inflammation markers were normal. Fast forward, I continue to have flares and scans show MP.
Overall, I am in excellent health. I am going to add some supplements and tweaks to my diet. What can I expect as far as medication and treatment for this diagnosis.
Thank you in advance,
Barb

Jump to this post

Did you start treatment?

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