Comments on: Research forges path to effective treatment for sclerosing mesenteritis

By: Marteau Sally

Marteau Sally — Wed, 08 May 2013 20:20:10 +0000

HI,
I have been suffering with it for about two years as well. I was put on steroides which really helped the inflamation and reduced the ascites and pain but the side effects were bad so now the steroids are coming down and I’ve just started Tamoxifene. What medication are you on? I have been so ill and unable to work for all this time and feel bad about that.
I live in France and have not found anyone else with this illness and the docters are not sure what to do either.
One thing that does help me is eating very healthily with not too many carbs and yoga.
Hope to hear from you soon, Sally

By: Polly Gilgenbach

Polly Gilgenbach — Wed, 08 May 2013 20:12:20 +0000

In reply to Marteau Sally. Thank you for your note. I am sorry for the difficulties you have been experiencing. There is a link at the end of the story with additional information on sclerosing mesenteritis. I hope that will provide some of the answers you are looking for.

By: Marteau Sally

Marteau Sally — Wed, 08 May 2013 20:07:48 +0000

Hi,
I was diagnosed with sclerosing mesentiritis in January after being very ill for over a year and a half and alot of ascites and three operations for biopsies. I’ve been put on steroides and side effects were bad so that is coming down and now am on Tamoxifene. I would like to know if anyone knows anything about it?

By: Helen

Helen — Fri, 03 May 2013 09:23:41 +0000

Hi,

I was just diagnosed today at the Mayo Clinic in Phoenix with sclerosing mesenteritis. Since it seems to be so rare, I am looking to connect with other people who suffer from it. Is there a support group online anywhere?

By: Mary

Mary — Tue, 26 Feb 2013 23:21:49 +0000

I was diagnosed about a year ago. The pain seems to exacerbate and sometimes is terrific. No one here seems to know anything about it. Really feel alone.

By: Ed

Ed — Wed, 09 Jan 2013 22:06:15 +0000

In reply to Nettie Anders. I found out I had SM this time last year. I've been on the presidone. I've had two cat scans and they say it is getting smaller. The diarreha is the worse part for me. I just wanted to encourge you to hang in there.

By: Nettie Anders

Nettie Anders — Thu, 20 Dec 2012 21:20:43 +0000

I have Mesenteric Paniculatis, I have had it about 5 years, I had direah so bad I could not leave home if I ate. So I did not eat or drink, until I got back home. I was put on Steroids, but the side effects were so bad I felt like I was going down hill so bad, that I just wanted, a some kind of a normal life. So I got off the steroids, I am taking Welchol, which is half way, keeping the direah under control. They have not done a biopsie, as the Dr. said the were afraid of spreading the inflamation. I don’t have a lot of pain at this time, but I am sure in time, it will come back.
If any one has any information for me, please send it to me.