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Mesenteric Panniculitis or Sclerosing Mesenteritis
Digestive Health | Last Active: Feb 6 6:57am | Replies (1506)Comment receiving replies
Hello,
I'm 52 years old, from the Netherlands and diagnosed with Mesentric Panniculitis in October 2019, two years after my problems started in 2017.
I have pain upper left-mid-right in my abdomen, mostly left and mid. it takes a lot of energy, so I have an energy-problem as well. Also I feel my heart beat in my abdomen, on the left as well. In 2017 that was the main issue, so they first thought I had a problem with my heart. After all seemed well they thought it might be in my head, but I felt it in my body, so I kept on going visiting doctors.
After they found a Schatzki-ring, which was solved with medication, and a gal-blader problem (gal-bladder was removed) the problems kept getting worse.
In hospital they by then had noticed the strange masses on the echo and scans, but that didn't ring a bell till I got to a clever doctor that looked it up.
It is a very long story, and I tried to tell it in a few words (sorry for the language-errors that might be in it).
The doctor that is treating me now had never heard of my disseas, but she has contact with another specialist in another hospital that does.
So far I have tried two courses of two weeks with Prednisolon 20mg. It gave some improvement, but did nothing anymore in the end. I had a lot of medical exams in hospital, but everything kept pointing towards Mesntric Panniculitis.
Now I have been on 40mg Prednisolon daily for three months, experienced a lot of side effects but there was not really improvement.
After that they put me on Azathioprine, but I got very depressed of that, and I was already depressed from the Prednisolon, so I quit after two weeks.
Now I am on Tamoxifen 10mg daily, and the unexpected happened: there is improvement!!! I took a lot of painkillers during all these years, but since I use Tamoxifen (two weeks now) I have not used a single paracetamol or naproxen.
All my troubles are not over, but the improvement is noticeable.
The story's and all the information on this forum gave me a lot, so I would like do do something in return and decided to share my story with you all.
In the Netherlands I have found no one yet to exchange experiences with, no forum, nothing.
So thank you all, and stay positive!!!
Kind regards from the Netherlands,
Marcel L.
Replies to "Hello, I'm 52 years old, from the Netherlands and diagnosed with Mesentric Panniculitis in October 2019,..."
Hi Marcel,
I was diagnosed at 49 and am 56 now. I did go into remission for two years, but by August 2017, MP reared it's ugly head again and it has been a huge struggle to try to reach remission again. The first outbreak was solved with 3 months of Prednisone (40 mg) and then a taper down for another three months. But the side effects were many for me and I ended up suffering from esophageal spasms (feel like a heart attack), so the doctors took me off. This time around, I have not been so lucky, and like you, am also on Azathioprine (4 pills daily) and Tamoxifen (20 mg.) daily as well. This site has been very helpful for me and it really helps to talk to people that 'get it'. I hope the tamoxifen proves to be successful for you! Also, for me, stress and cold, wet climate (I'm from Canada) play large roles in how I am feeling. I hope this was helpful for you....
I am curious, is the pain in the same spot as the mesentery mass is located? You mentioned your pain being on the left, correct?
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Morning @marcelk! Welcome to our group-I’m from Alberta Canada. Your story is not dissimilar from so many of ours. I’ve had this disease for years now. Have you found foods that you cannot manage? -a diet that helps? You said some magic words -“stay positive”- for sure so important! -and stick with finding who helps and what works. Eliminate as much stress that you can and rest -so so much more. You are on a hood path-listen to your body and know there are others out here!