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

@lioness Good to hear!

Liked by lioness

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@hopeful33250

Have you considered a second opinion at a Mayo facility, @kimh? They really do have experts there.

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I have strongly considered coming to Mayo. My doctors are concerned about the cost for me as I am from Canada. I'm not sure that the Mayo Clinic can offer me anything different as far as treatment goes to be honest.

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@hopeful33250

@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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@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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I like it, @lioness!

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@hopeful33250 Good I'm glad it meets with your approval.lol

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@lioness

@hopeful33250 Good I'm glad it meets with your approval.lol

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🏆

Liked by lioness

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@kimh

Thanks for the information! I am currently on azathioprine and I seem to be tolerating it so far. I'm also on tamoxifen and weaning down on Prednisone. I'm hoping that this will be the successful cocktail! I have been on Prednisone since August 2017. I had another ct scan about a week and a half ago. My scan shows that everything is the same as my previous scan in 2017, which is good news that things haven't progressed, but that nothing has 'regressed'. Is it possible for the inflammations to reduce in size? I would love to get off of the steroids. I have just been diagnosed with severe osteoporosis and I have a feeling that prolonged prednisone use may have been a contributor.

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I have MP, live in Australia and was on steroids for a few months early last year, now only on tomoxefen. My Dr took me off steroids as they discovered I had osteoporosis which is quite bad too, (yes steroids can make it worse)I now I have to have a needle every 6 months for osteoporosis called Prolia.

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Hello @jolied
My doctor has put me on fossamax (one pill weekly) for my osteroporosis…which Prednisone (steroid) was probably a contributor to. I haven't heard about Prolia, but will ask my rheumatologist on my next visit! Are you on any immunosuppressant medication?

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@jolied

I have MP, live in Australia and was on steroids for a few months early last year, now only on tomoxefen. My Dr took me off steroids as they discovered I had osteoporosis which is quite bad too, (yes steroids can make it worse)I now I have to have a needle every 6 months for osteoporosis called Prolia.

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I hope that the Prolia injections work well for you, @jolied.
Will you provide us with an update on how you are doing with the Prolia?

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@hopeful33250

I hope that the Prolia injections work well for you, @jolied.
Will you provide us with an update on how you are doing with the Prolia?

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yes will do, so far so good. They are quite expensive, but as a pensioner I can get them on the PBS scheme here in Aussi

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@kimh

Hello @jolied
My doctor has put me on fossamax (one pill weekly) for my osteroporosis…which Prednisone (steroid) was probably a contributor to. I haven't heard about Prolia, but will ask my rheumatologist on my next visit! Are you on any immunosuppressant medication?

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No only on Prolia and Tomoxefen at present. No immunosuppressant medication.

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Hi all, not sure if this group is still active.
I've been diagnosed with Mesenteric Panniculitis (CTS) last December, following 12 months of trying to find foods that I might be allergic to. I'm from Montreal QC, and not sure I'm welcome here, but I haven't found any sites or forums in Canada on this rare disease. Anyway, so I have pains (sometimes severe) but mostly, I feel bloated and nausea. I saw my GP, who told me he read about this in university, but had seen it, and referred me to a Gastro-Enterologist, who's sending me for a colonoscopy, and a gastroscopy in three weeks.
My question: Since last Saturday Feb 23, I feel like I have several large heartbeats in my stomach, does this sound familiar to anyone?

Thank you in advance for your answers/help
Jacques

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@jacques101

Hi all, not sure if this group is still active.
I've been diagnosed with Mesenteric Panniculitis (CTS) last December, following 12 months of trying to find foods that I might be allergic to. I'm from Montreal QC, and not sure I'm welcome here, but I haven't found any sites or forums in Canada on this rare disease. Anyway, so I have pains (sometimes severe) but mostly, I feel bloated and nausea. I saw my GP, who told me he read about this in university, but had seen it, and referred me to a Gastro-Enterologist, who's sending me for a colonoscopy, and a gastroscopy in three weeks.
My question: Since last Saturday Feb 23, I feel like I have several large heartbeats in my stomach, does this sound familiar to anyone?

Thank you in advance for your answers/help
Jacques

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Welcome Jacques101. I’m in Alberta, diagnosed 9 years ago at university hospital in Edmonton. I’m not sure about your “heartbeats”. My symptoms when enraged are extreme pain usually in my left or right sides. I get wild projectile vomiting and quickly become dehydrated and all that comes with that next. I have had this for many years-from a young person they suggested. I have with elimination diets figured out what foods are triggers, figured out I must more then the usual amount of rest and eliminate as much stress from my life as possible. A positive approach is essential. It takes time to figure out what works for everyone manages differently. I never go far without my gravol! This is a positive group-it’s good to know you are not alone. There’s a Facebook group as well. They have made a huge difference with suggestions and support! Be well❤️

Liked by kimh

REPLY
@jacques101

Hi all, not sure if this group is still active.
I've been diagnosed with Mesenteric Panniculitis (CTS) last December, following 12 months of trying to find foods that I might be allergic to. I'm from Montreal QC, and not sure I'm welcome here, but I haven't found any sites or forums in Canada on this rare disease. Anyway, so I have pains (sometimes severe) but mostly, I feel bloated and nausea. I saw my GP, who told me he read about this in university, but had seen it, and referred me to a Gastro-Enterologist, who's sending me for a colonoscopy, and a gastroscopy in three weeks.
My question: Since last Saturday Feb 23, I feel like I have several large heartbeats in my stomach, does this sound familiar to anyone?

Thank you in advance for your answers/help
Jacques

Jump to this post

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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@jimmymac

My husband was diagnosed with mesenteric Panniculitis in 2010 after many decades of visits to GI doctors and hospitals. He had a small bowel obstruction that showed severe inflammation of his mesestery layer. It was first treated with prednisone and liquid diet. The mesentery layer was greatly reduced with 6 months of steady treatment. But since then he has had two more episodes of small bowel obstructions. We are unaware of what triggers such events but we do know that hard vigorous labor aggravates the condition, causung pain, discomfort, insomnia, vision problems, acid indigestion ( now treated with omeprazole. )
Early diagnosis could find nothing and patient was told to seek help from psychiatrist and not a gastric doctor. Decades later MRI results showed increased inflammation in mesentery and diagnosis is mesentery panniculitis. With very little medical information of this very rare condition we are at a loss to finding doctors to treat this disease. Is there a doctor somewhere in New York who can help us.

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Hi i was just diagnosed with this disease.And i would like to learn more about it.Do you have any suggestions

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