1. < Digestive Health

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

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 25, 2019
In reply to @dmaquino "I’ve been on it for 3 weeks, the dr says it takes 2-3 month to really..." + (show)
@dmaquino

I’ve been on it for 3 weeks, the dr says it takes 2-3 month to really notice anything ... I feel nauseated right now with it but that’s about it...: my ca 125 did decrease so that’s a plus. We are at The Mayo Clinic right now swing GI and surgeons. Will update when I know more.... ❤️

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Thanks for your update @dmaquino. I look forward to hearing from you when you know more.

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dementorshoes | @dementorshoes | Jan 31, 2019

Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis. I thought the hospitalist was being melodramatic when he squatted down by my bed to say I had mesenteric panniculitis and he had to research it because I was the first patient he'd ever diagnosed with it. I'm sure the rest of you know how disparaging that can be, especially on top of the ridiculous pain. I am beginning my search for a GI doc who does not have to Google the damn thing. I'm on 40mg of Prednisone, Pepcid, and Tamoxifen (a breast cancer treatment, for some unknown reason). This pain giggles at Percocet for a few hours, then just laughs at it. I'm no stranger to pain, but this is a world of difference and it's truly beating me down. Thankfully, and sadly, it is a blessing to discover I am one of so few, but not alone.

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2 replies
sneezy24 | @sneezy24 | Jan 31, 2019
In reply to @hopeful33250 "@sneezy24 Hello Mick, Just wondering how you are doing with your steroid treatment. Are you feeling..." + (show)
@hopeful33250

@sneezy24 Hello Mick, Just wondering how you are doing with your steroid treatment. Are you feeling any better, yet?

Hello @dmaquino Just wondering how you are doing with your new drug 6MP, notice any difference in how you are feeling or with side effects?

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Hi Teresa. I noticed a slight improvement towards the end of the 10 day course, but I'm now back to square one (actually getting worse pain and discomfort). Seeing my GI consultant next Monday, hoping for a longer course of steroids (8 weeks @ 40mg)

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1 reply
kimh | @kimh | Jan 31, 2019
In reply to @dementorshoes "Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis...." + (show)
@dementorshoes

Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis. I thought the hospitalist was being melodramatic when he squatted down by my bed to say I had mesenteric panniculitis and he had to research it because I was the first patient he'd ever diagnosed with it. I'm sure the rest of you know how disparaging that can be, especially on top of the ridiculous pain. I am beginning my search for a GI doc who does not have to Google the damn thing. I'm on 40mg of Prednisone, Pepcid, and Tamoxifen (a breast cancer treatment, for some unknown reason). This pain giggles at Percocet for a few hours, then just laughs at it. I'm no stranger to pain, but this is a world of difference and it's truly beating me down. Thankfully, and sadly, it is a blessing to discover I am one of so few, but not alone.

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Wow! You touched my heart and I'm sure the hearts of many reading on this forum! Just to give you another medication suggestion. I am also on azathioprine, which suppresses your immune system. I have was first diagnosed in March 2014 and ended up in remission for two years, only to have it rear it's ugly head in August 2017 and I have been off sick ever since. I also find that stress and climate are playing major roles in flare ups. I hope that you find something on this forum to help. At least you know that you are not alone.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2019
In reply to @sneezy24 "Hi Teresa. I noticed a slight improvement towards the end of the 10 day course, but..." + (show)
@sneezy24

Hi Teresa. I noticed a slight improvement towards the end of the 10 day course, but I'm now back to square one (actually getting worse pain and discomfort). Seeing my GI consultant next Monday, hoping for a longer course of steroids (8 weeks @ 40mg)

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@sneezy24 I am glad that you noticed improvement with the steroids, but sorry to hear that you are now back at square one. It will be interesting to hear what your GI doc has to say.
Would enjoy hearing from you after your next appointment. Will you post an update?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2019
In reply to @dementorshoes "Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis...." + (show)
@dementorshoes

Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis. I thought the hospitalist was being melodramatic when he squatted down by my bed to say I had mesenteric panniculitis and he had to research it because I was the first patient he'd ever diagnosed with it. I'm sure the rest of you know how disparaging that can be, especially on top of the ridiculous pain. I am beginning my search for a GI doc who does not have to Google the damn thing. I'm on 40mg of Prednisone, Pepcid, and Tamoxifen (a breast cancer treatment, for some unknown reason). This pain giggles at Percocet for a few hours, then just laughs at it. I'm no stranger to pain, but this is a world of difference and it's truly beating me down. Thankfully, and sadly, it is a blessing to discover I am one of so few, but not alone.

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Hello @dementorshoes and welcome to Connect.

You must be relieved to have a diagnosis for this painful condition. Yes, rare disorders are just that, very rare. You are fortunate that it was found so that you can find some appropriate treatment.

Are you near a Mayo facility (located in Minnesota, Florida and Arizona)? They have some great doctors who specialize in this disorder.

Please continue to post as you look for assistance in dealing with this new health problem.

You might find this YouTube video helpful. It was made by a patient at Mayo,

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andrwlp | @andrwlp | Feb 2, 2019
In reply to @kelseydm "Hi Eddie. So sorry to hear what you are going though. I know not having an..." + (show)
@kelseydm

Hi Eddie. So sorry to hear what you are going though. I know not having an answer must be really frustrating. Unfortunately, we can't make specific treatment recommendations through this correspondence, but if you'd like to seek help from Mayo Clinic or get a second opinion, please call one of our appointment offices (Arizona: 8480-301-8484 Florida: 904-953-0853 Minnesota: 507-538-3270). Hope you find some relief soon!

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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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1 reply
dmaquino | @dmaquino | Feb 4, 2019

Update on visit at The Mayo Clinic in Rochester...,, we are finally home after 2 weeks! That trip was hard on me but so worth it! We have a concrete diagnosis of Sclerosing Mesenteritis..... I had an MRE, liver ultrasound, blood work and yet another colonoscopy. The docs were wonderful and everyone was very knowledgeable. My GI doc was excellent in communicating with me wether on phone, in person or on the portal! I will continue 40mg of Prednisone and 50mg of 6mp and will have blood work to check elevated liver enzymes as my liver is not tolerating it well..... Mayo will be working with my hometown GI as I am her first case to help her learn how to treat me ..... I hope this helps anyone who is thinking of going to Mayo!!!!❤️

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 4, 2019

.What a great report @dmaquino . I am glad you had such a positive experience. It sounds like you made some great progress in treating this disorder.

Will you post periodically and update regarding your progress?

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dmaquino | @dmaquino | Feb 4, 2019

Yes I will! I have a question, has anyone filed for social security disability eithbis diagnosis in the group

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