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

@kimh

Hello @jacques101, You are not alone, even in Canada. I'm from Ontario and have been suffering from this disease since March 2014. I was diagnosed through CT as well as surgical biopsy. Thankfully, there was no underlying condition. This is a result of a severe fall on black ice. I was in remission for about two years (almost forgot that I had the disease!) due to steroid therapy and eliminating stress (I took a year off). After returning back to work for a year, I fell out of remission, so I have learned that stress is a major factor for me. Also, weather systems affect my pain level as well. I have been battling to return back to my old life (probably not a realistic goal!) and I can share with you some of the meds that I am currently on. I'm taking 200 mg. of azathioprine, 20 mg. tamoxifen and am currently weaning down on Prednisone (I have been on since August 2017!) and am on 4 mg. daily. Also (lucky to be in Canada…), I am also on CBD oil to try to help with inflammation. Also, I have found taking daily saunas (is this in my mind???) to be helpful. I haven't experienced 'heartbeats' in my stomach, but my pain seems to be on my right side of my abdomen and feels kind of like someone sticking their hand and twisting my guts! If you are experiencing nausea, perhaps your doctor might consider Ondansetron. It has been helpful for me. So, as you can see, we are still active on this site lol! I hope this post is helpful!

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Hi does anyone know a good Dr.In New york for this disease..Im in so much pain..Feels like someone is straggling my mid section and using a blow torch at the same time…

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@andrwlp

Hello Kelsey, I have been diagnosed with sclerosing mesentary panniculitis. ive had ct scans and and mri. I live in florida and my GI doc has refferred me to Mayo in jacksonville. Do you have a contact there i can get in touch with? Thank you. I failed prednisone and budesonide due to side effects

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Hi there, fellow Floridian. I'm in Orlando and have just been referred to Mayo, as well. Working with insurance to get the specifics worked out. I'm glad your GI was honest, and wise enough to refer you there, too. Hoping you get the help and relief you need. If you've already been, and don't mind sharing info, can you let me know how it went, please? I'm truly looking forward to some relief from this, but am understandably anxious about the process. Good luck and thanks.

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@dementorshoes

Hi there, fellow Floridian. I'm in Orlando and have just been referred to Mayo, as well. Working with insurance to get the specifics worked out. I'm glad your GI was honest, and wise enough to refer you there, too. Hoping you get the help and relief you need. If you've already been, and don't mind sharing info, can you let me know how it went, please? I'm truly looking forward to some relief from this, but am understandably anxious about the process. Good luck and thanks.

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Hi I'm suffering with immense side Pain..Terrible Burning..Like someone is strangeling my mid section more to right back.Are these the symptoms anyone is having?

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@lioness

@hopeful33250 o.k.here it goes See what you think. Why Connect. We have a variety of pain,back,stomach ,nerve but we fight to keep us sane ,also those ugly beasties ,anxiety,panic,depression, being overwhelmed,those beasties,push them down into the ground .
It's through Connect that we do CONNECT. We all care for each other ,share with each other and it starts by opening up
And emptying our cup.
So be grateful everyday for your blessings everyday ,if you just want to talk
that's o.k.

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@hopeful33250 @dementorshoes Thank you both

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@robinbeth6

Hi I'm suffering with immense side Pain..Terrible Burning..Like someone is strangeling my mid section more to right back.Are these the symptoms anyone is having?

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Oh, Robin, bless your heart. I'm right there with you. In fact, you described the pain perfectly. I was saying it was like an unbelievably painful hug. Or comparing it to back labor. Anyway you describe it, it's legitimately, the worst pain I've ever experienced (and I've had my share). Mine has been going on for 6 weeks now and I've become used to some of it, but there are times it takes me to tears. I actually am currently sporting a black eye from falling after the pain caught me. I was trying to stand when the pain took me to me knees and I briefly fainted, and down I went (I've fabricated a much more entertaining story involving ninjas and a top secret mission). I so hope you get good medical help and find some relief.

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@dementorshoes

Oh, Robin, bless your heart. I'm right there with you. In fact, you described the pain perfectly. I was saying it was like an unbelievably painful hug. Or comparing it to back labor. Anyway you describe it, it's legitimately, the worst pain I've ever experienced (and I've had my share). Mine has been going on for 6 weeks now and I've become used to some of it, but there are times it takes me to tears. I actually am currently sporting a black eye from falling after the pain caught me. I was trying to stand when the pain took me to me knees and I briefly fainted, and down I went (I've fabricated a much more entertaining story involving ninjas and a top secret mission). I so hope you get good medical help and find some relief.

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My doctor yesterday said he's not convinced its Mp..He said he needs more bloods.But i just saw this dr because he was the only one available yesterday.
What gives you relief?

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Hi @robinbeth6 , Have you had a CT scan? Many have been diagnosed that way. I also had a surgical biopsy done. I don't remember blood work being used to diagnose MP. Maybe your doctor is trying to rule out other things?

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@kimh

Hi @robinbeth6 , Have you had a CT scan? Many have been diagnosed that way. I also had a surgical biopsy done. I don't remember blood work being used to diagnose MP. Maybe your doctor is trying to rule out other things?

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My Ct scan said there is evidence so he wasnt convinced..Im not sure why.But ive been in crazy pain for a week.

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I'm not sure why either. Have you discussed surgical biopsy at all? Also, has the doctor prescribed anything for the pain?

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@dementorshoes

Oh, Robin, bless your heart. I'm right there with you. In fact, you described the pain perfectly. I was saying it was like an unbelievably painful hug. Or comparing it to back labor. Anyway you describe it, it's legitimately, the worst pain I've ever experienced (and I've had my share). Mine has been going on for 6 weeks now and I've become used to some of it, but there are times it takes me to tears. I actually am currently sporting a black eye from falling after the pain caught me. I was trying to stand when the pain took me to me knees and I briefly fainted, and down I went (I've fabricated a much more entertaining story involving ninjas and a top secret mission). I so hope you get good medical help and find some relief.

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I'm not sure this Doctor is great!!I don't think he's so familiar with this Disease.How often do you get flair ups?What type of diet are you on?
Can this mimic Collitis?
Thanks so much!!

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@kimh

I'm not sure why either. Have you discussed surgical biopsy at all? Also, has the doctor prescribed anything for the pain?

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I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

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@robinbeth6

I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

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Do you know of a Dr.In New york or vicinity?

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@robinbeth6

My Ct scan said there is evidence so he wasnt convinced..Im not sure why.But ive been in crazy pain for a week.

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Blood work won't reveal anything relevant to MP, I don't believe. Only imaging. I've had 2 CT scans, 2 MRI s, and an MRCP. Oh, and some new fangled ultrasound of the pancreas that's done via endoscopy. The MP mass waa evident on all of them, and unchanged after 6 weeks of meds. Is this a PCP or a GI?

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@robinbeth6

Do you know of a Dr.In New york or vicinity?

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I'm from Canada, so I can't help with a doctor. I am under the care of a GI and my family doctor. My GI has taken over the treatment plan (Prednisone, Tamoxifen, and Azathioprine) and my family doctor has been taking care of my pain (in the oxy family). They communicate regularly. At the end of this month, I will be 'celebrating' my fifth year with this disease. I had been in remission for two years, but have been battling a flare up since August 2017. Diet doesn't seem to bother me (I am pretty health conscious to start with), but stress and the weather seem to be playing a role. I have had several relapses while trying to wean off of the Prednisone. We are hoping that we have the right cocktail now! I hope this helps you…

Liked by dementorshoes

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@robinbeth6

I really only saw this Dr.For lack of anyone else.And he said he wants to wait for the bloods.Last night i would have gone to the hospital..

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Actually, the hospital might have helped with pain management and ordering a ct scan.

Liked by dementorshoes

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