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

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

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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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@hopeful33250 Hi I just wanted to let you know Teresa with my chair exercises I started to do some Tai Chai at the end of exercises to calm and cool down. Thanks again

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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.

REPLY
@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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🏆

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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.

Jump to this post

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.

Jump to this post

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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