Mesenteric Panniculitis and Sclerosing Mesenteritis: Let's connect

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.

Mardelle Poff | @mardellepoff | Jun 1, 2016

In reply to @colleenyoung "Welcome to Connect @mardellepoff. What a relief to have the hope of diagnosis so that you..." + (show)

Thank you. I just sent a message to Billindc. Hoping we can connect and exchange info.

BILLinDC | @billindc | Jun 1, 2016

In reply to @colleenyoung "Welcome to Connect @mardellepoff. What a relief to have the hope of diagnosis so that you..." + (show)

I'm going to try a third GI doc in DC and if concerns aren't addressed, book an appointment with Darrell Pardi up at Mayo in Rochester. Dr. Pardi looks to be North America's thought leader on MP. My GI doctor here is of the opinion that if it doesn't look like lymphoma, go home and don't worry. Take some Zofran and call him if I need prednisone. I think they underestimate the discomfort, bloating, acute pain, etc. It's simply not a very well understood disease and I think most MDs are frustrated as well and probably do not want to admit they are just a little bit stumped. I think Darrell Pardi is the man to see if you want the final word.

Mardelle Poff | @mardellepoff | Jun 1, 2016

In reply to @colleenyoung "Welcome to Connect @mardellepoff. What a relief to have the hope of diagnosis so that you..." + (show)

Thank you, @billindc . I guess we are all trying to find our way through this.

LS4 / Lisa Schwart Tulsa Oklahoma (FB page) | @lisas444 | Jun 1, 2016

In reply to @colleenyoung "Welcome to Connect @mardellepoff. What a relief to have the hope of diagnosis so that you..." + (show)

Bill in dc - you may want to check ahead of time if pardi is seeing any Sm/mp patients right now or at least new ones. We have a private group of 260 members (ages range 2-80) with sm/mp now and a handful have gone for appts at mayo mn thinking they were having appts with both Drs. Pardi and Schaffner and they didn't and saw others. Not sure if that's a temporary thing or not????? Or what the reasoning was???? Or if they misunderstood on who they were seeing, but all lately thought they had appts with them and then didn't. Maybe check ahead of time??? Just some thoughts. 🙂 we have a handful of members in the dc area. Lisa Daughter w/SM diag. Age 14 If you or others are interested in the private group as well, you can pm me for info.

BILLinDC | @billindc | Jun 1, 2016

In reply to @k2aunt "I came across this posting while doing a search and decided to join because it looks..." + (show)

@k2aunt

I came across this posting while doing a search and decided to join because it looks useful to me. I was diagnosed with mesenteric panniculitis on February 20 of this year after going to the emergency room in extreme pain and not being able to keep any food or liquid down. I was brought back to the rapid response room from triage because of a high heart rate which i wasn't having any chest pains at all and the e.r. doc sent me for a CT Scan which showed the mesenteric panniculitis. i was told the pain could last from 12 to 18 months which is not fun. I was put on levaquin and flagyl and told to follow-up with a g.i. doc which i did with an associate of my regular g.i. doc.. She ran some blood work and put on me on another set of meds which worked for a bit then the pain came back again. Got a chance to talk to my regular g.i. doc when accompanyming my husband on his follow-up visit and mentioned that i was diagnosed with this. I was told if i am still having issues to let him know after my husband's endoscopy which i did and was prescribed another med which helped for a bit then stopped worked like the other meds i had been on. While waiting for my husband to come out of surgery for a muscle biopsy i received a call from my g.i. doc after leaving a message to let him know that the pain came back full force a couple of days prior with nothing helping. He had me go under another endoscopy which didn't show anything to the naked eye since he couldn't do a biopsy since I am currently on coumadin and didn't come off since this was somewhat an emergency. I was put on 3 new meds at the time which somewhat helped and like before didn't last very long helping the pain. Saw him for my follow-up last monday and put on another med along sending me for another set of x-rays that showed the area that does not show up with a colonoscopy and endoscopy which those came back normal. My doc is now stumped on what to do to help control the pain so he is at the point he is sending me to either Johns Hopkins or Medstar Georgetown Hospital for further evaluation. I don't mind dealing with pain but if i get a "flare-up" it hurts to the point i can't do anything. Thanks for listening and any suggestions you might be able to provide.

Jump to this post

I am so sorry to hear of your husband’s suffering. I am in Silver Spring, so not too far from you. Outside of a fellow in Chicago, Dr. Pardi that I mentioned in my post is our best bet. Nothing available at Johns Hopkins, which is where I looked first. I’ve gone through the same ER trips, 3 times in 10 months until they decided it was not diverticulitis or appendicitis. I understand what you have been through. Even experienced and noteworthy GI practitioners in our area have only seen 1 or 2 MP cases in their careers. Please stay in touch. ~Bill

BILLinDC | @billindc | Jun 1, 2016

Wow, that’s good information, much appreciated!

Colleen Young, Connect Director | @colleenyoung | Jun 1, 2016

@billindc I believe you are already in contact with a physician at Mayo Clinic MN. However, if either you, @mardellepoff or anyone else would like the contact numbers please see the information on this page: http://mayocl.in/1mtmR63

@lisa444, so excited to read that you and Mac are getting ready to go home. Safe travels.
@bertbiz how are you doing? I wish you all the best with your appointment on Monday. Keep us posted.

bertbiz | @bertbiz | Jun 2, 2016

In reply to @colleenyoung "@billindc I believe you are already in contact with a physician at Mayo Clinic MN. However,..." + (show)

I will let you know, Colleen. Glucose tests are looking good, so no more of those until they take me off the Prednisone. Roberta

BILLinDC | @billindc | Jun 2, 2016

In reply to @colleenyoung "@billindc I believe you are already in contact with a physician at Mayo Clinic MN. However,..." + (show)

Thank you!

bertbiz | @bertbiz | Jun 7, 2016

In reply to @colleenyoung "Hi @bertbiz. It appears that you were able to post to this thread successfully. Welcome to..." + (show)

Hi Colleen,
I am pleased to report that my GI Appt. went very well yesterday. I viewed my CT Scan and there was no evidence of growths, lesions, ulcers, cancer or tears anywhere. The Dr. told me that managing my MP would be the way to go. I will continue to take prednisone and start to taper off next week taking a total of 2 months to be completely done. We will assess the pain, if it comes back. I will have a second CT Scan in September to compare to the baseline one I had a couple of weeks ago. She wants me to think of this as an IBS type of thing managing "flare ups" with prednisone periodically if necessary. A biopsy wasn't indicated, either. So all in all, it was pretty good news. I am feeling better. My pain has been a 1 or 2 instead of an 8 or 9. I was very happy. I will also be doing some holistic things, such as Reiki, meditation and Yoga. I hope this is helpful to others. It was nice to have some hope...

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