Mesenteric Panniculitis or Sclerosing Mesenteritis

@kimh Being on Prednisone so long affects bones and teeth negatively... Even with Transplant patients they have to get off of the Prednisone gradually... then the lose a lot of weight... a friend, a liver transplant patient (male) lost 50 pounds during the time he got off of prednisone.. Have you checked with your physician lately concerning this?

Yes, my GI works out of Mac. His name is Dr. David Armstrong. You may have to wait a while for a first appointment, but honestly, well worth the wait! Keep me posted!

I'm in constant contact with my 'team'! I also have PMR and guess what meds they give for that? Yes, you guessed it! I also have my bloodwork done monthly to keep track of things. You are right about the bones as I now have Osteoporosis as well.

Hi everyone! I am sending out best wishes for a very healthy and happy New Year ahead! I have a question about a symptom that I have been experiencing. If you read through the thread, you will see that I have been suffering with a relapse of MP since Aug. 2017 after being in remission for two years. I have been noticing another 'symptom' and was wondering if anyone else here is experiencing it (or maybe it's a symptom of something else?)? For the past year or so, I have sporadically had blood (fresh) in my stool and on the tp. I am noticing that it seems to happen more often when my pain levels are high from MP, but have found no other connection. I had a colonoscopy (around two or three years ago), which didn't show anything ominous at that time. My doctors have told me that it's not anything to be worried about because the blood is fresh, but lately, is happening more often. Has anyone else also experienced this as a symptom of MP?

I learned in school that bright red blood is most office right near the opening and also often hemorrhoids. That is all the information I can recall.

sorry, my computer did an auto-correct. that bright red blood is most often right near.....

I did have some internal hemorrhoids when they did the colonoscopy. Do they burst? Could that account for the pain the day before and the day of when I have bleeding?

I figured lol!!!!

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.

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!