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.

cconnors | @cconnors | Aug 27, 2019
In reply to @jarnold246 "I finally took my situation into my own hands and decided to reach out to Mayo..." + (show)
@jarnold246

I finally took my situation into my own hands and decided to reach out to Mayo to try to get in to see a GI doc there. I have an appointment in late Oct. I am looking for any advice about what to expect. I do not know what doc I will see yet, but am in the process of getting my imaging and notes from my GI doc here to bring with me. I would appreciate any and all advice. Thanks in advance!

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I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

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4 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019
In reply to @cconnors "I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally..." + (show)
@cconnors

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

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Thanks for sharing your good experience, @cconnors.

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kimh | @kimh | Aug 27, 2019
In reply to @cconnors "I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally..." + (show)
@cconnors

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

Jump to this post

Actually, I have a question regarding what medications have been recommended for flare ups? I am having a horrible time getting off Prednisone. Each time I wean down, even just half a mg., I have been relapsing and have to begin all over again! So frustrating!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019

Have you addressed this with your doctor, @kimh? Perhaps others in the group will share what meds work well for them.

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1 reply
denia | @denia | Aug 27, 2019
In reply to @kimh "Actually, I have a question regarding what medications have been recommended for flare ups? I am..." + (show)
@kimh

Actually, I have a question regarding what medications have been recommended for flare ups? I am having a horrible time getting off Prednisone. Each time I wean down, even just half a mg., I have been relapsing and have to begin all over again! So frustrating!

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I have had good results with Meloxicam. I only take it every day if I am having a flare up, otherwise either every other day or twice a week. It has really helped me manage the inflammation.

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kimh | @kimh | Aug 27, 2019
In reply to @hopeful33250 "Have you addressed this with your doctor, @kimh? Perhaps others in the group will share what..." + (show)
@hopeful33250

Have you addressed this with your doctor, @kimh? Perhaps others in the group will share what meds work well for them.

Jump to this post

Yes, I have been told that some people have a great deal of difficulty coming off steroids. I'm only on 5 mg daily, but can't seem to get off them! We are waiting for me to reach full remission (no pain pills for 4-6 weeks) before fiddling around with the dosage again.

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kimh | @kimh | Aug 27, 2019

Thanks! I'm writing it down! I go to see my specialist on Thursday!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019
In reply to @kimh "I was in remission for two years and then it reared it's ugly head again! Currently,..." + (show)
@kimh

I was in remission for two years and then it reared it's ugly head again! Currently, I have been battling this relapse for two years. I'm having great difficulty getting off the prednisone, though I am on a low dose. Most people here would suggest to keep stress levels low and I would agree 100%!

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Could you share what you do to keep stress levels, low, @kimh?

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kimh | @kimh | Aug 27, 2019

Well, I am currently on sick leave from my job; though that may end by April. I have tried to keep things calm in my home, which includes routine. Not rut, but routine. I have given myself a few daily jobs around the house that are non-negotiable, no matter how bad I am feeling. I stopped wearing a watch, greatly reduced listening to the news (specifically politics!) and stopped watching the weather channel. In place of what was my life, I read (who knew mysteries would be so enjoyable?), I (try to!) paint landscapes and in the winter have taken up sewing and knitting. I am quite pathetic at the last two, but they do keep me occupied lol. Because my doctor has not given me the go-ahead to go back to yoga (which I love!), I take some time daily just to do some meditative breathing. If I am up to it and the weather permits (I live in Canada), I go for a walk. Usually the walks are reserved for when my husband is home. It's nice to have the company. Finally a lot of 'drama' or sweating the small stuff has ended. Before this illness, day would drift into day, month into month, season into season. I was so busy that I think I lost sight of a few things. This illness has forced me to reevaluate needs and wants. I hope my experience helps!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2019

How wonderful, @kimh. I agree that mysteries are just great reads!!

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