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

@donnacarp

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.

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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?

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I figured lol!!!!

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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.

Liked by maralynn

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@marcellk

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.

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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!

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@marcellk

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.

Jump to this post

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….

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Hi Kim -good to hear from you here again! I’m sad to hear you are struggling and hope you can figure out what brought it on and get things back on track. Last CT says I’m “mild” right now and thankful -but seeing signs of sclerosis possibly. Our weather is crazy cold -43 with wind chill -49 this am. I too am affected by cold and wet. Any kind of stress pokes me. Get better and get rest!

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lol….so I shouldn't be complaining about -7, -12 with wind chill in balmy southern Ontario??? And now with covid, we can't escape! My last CT talked about calcification. I wonder if that is another term for sclerosis?? I hope you are feeling better. When you say 'mild', does that mean that the inflammations are shrinking?

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Morning! Yup welcome to the North! Lol! Yes think words mean the same-just the next step of our journey. Inflammation is calm would be what he said-and I still never really know when that might tip and usually have the feeling in my right side. But nothing to complain about. In the last year and half I’ve gone from my usual big D every am Ave 5 times to constipation. Never experienced that before -never! But having liver and lung issues so covid -I’m home. Looking forward to the vaccine. Any of our group get it yet that you know? Hoping it doesn’t set things off but will get it anyway. Hugs!

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@pcfromfm

Morning! Yup welcome to the North! Lol! Yes think words mean the same-just the next step of our journey. Inflammation is calm would be what he said-and I still never really know when that might tip and usually have the feeling in my right side. But nothing to complain about. In the last year and half I’ve gone from my usual big D every am Ave 5 times to constipation. Never experienced that before -never! But having liver and lung issues so covid -I’m home. Looking forward to the vaccine. Any of our group get it yet that you know? Hoping it doesn’t set things off but will get it anyway. Hugs!

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Ummm…so my daughter-in-law's grandmother (age 96) hasn't gotten it yet! I'm very upset with our roll out! If you are 60-80 years old, you can vaccinated as early as next week…..in GREECE! With all of my health issues, I wasn't really out there living an active life, but it would be nice not to be so frightened going out on a little outing to the local pharmacy!!! I thought that 'calcification' might mean sclerosing, unfortunately….btw, is it your choice to be in FM???

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Yup-lol-I love living here! Loved working here. Great community. From the East. I taught for 31 years-prison, psychiatric units, reform schools, mentally and physically handicapped, junior and sr high school kids who no one wanted in their courses. I was a Shop teacher for 8 years and a few in Home Ec. (First degree) stressful but great! Blessed with 14 grand children and a few extras that I always include in all. I sure would like to get that shot soon! We used to travel lots. My husband is 81 and works full time everyday when we can’t travel! He can get it sooner than I can -I’m “only” 71 -lol !

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@pcfromfm

Yup-lol-I love living here! Loved working here. Great community. From the East. I taught for 31 years-prison, psychiatric units, reform schools, mentally and physically handicapped, junior and sr high school kids who no one wanted in their courses. I was a Shop teacher for 8 years and a few in Home Ec. (First degree) stressful but great! Blessed with 14 grand children and a few extras that I always include in all. I sure would like to get that shot soon! We used to travel lots. My husband is 81 and works full time everyday when we can’t travel! He can get it sooner than I can -I’m “only” 71 -lol !

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I am a teacher as well!!! That's too funny! Although, I am off on leave, but taught anywhere from JK to grade 5. I have two grandchildren and one more on the way! It's the best!!! I hope we can vaccinated soon….I think most Canadians suffer from the 'travel bug'! I wonder when this is all said and done….will we be able to find airline tickets??? I think you may be able to get the shot with your husband, if you are his caregiver?

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@marcellk

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.

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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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@kimh

I am a teacher as well!!! That's too funny! Although, I am off on leave, but taught anywhere from JK to grade 5. I have two grandchildren and one more on the way! It's the best!!! I hope we can vaccinated soon….I think most Canadians suffer from the 'travel bug'! I wonder when this is all said and done….will we be able to find airline tickets??? I think you may be able to get the shot with your husband, if you are his caregiver?

Jump to this post

I am a retired teacher and am 60 years old. I have been identified with MP for about 4 years. Last summer I tested positive for HLA-B27 which is an inflammatory white blood cell issue! This past week I knew I was having a heart attack (Kim said something about that), it wasn’t but was very painful! My older brother (a cardiologist thought it might be an esophageal spasm) Was wondering if this is related to MP or HLA-B27? I am diabetic so do not take prednisone so it wasn’t that.
I have taken the first COVID shot (Moderna) and it was no problem. Had a bump and some pain the next day but it was like any of the shots you get in a muscle. I take the second one tomorrow. Will let you know how that goes.

Liked by kimh

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@jnelson210

I am a retired teacher and am 60 years old. I have been identified with MP for about 4 years. Last summer I tested positive for HLA-B27 which is an inflammatory white blood cell issue! This past week I knew I was having a heart attack (Kim said something about that), it wasn’t but was very painful! My older brother (a cardiologist thought it might be an esophageal spasm) Was wondering if this is related to MP or HLA-B27? I am diabetic so do not take prednisone so it wasn’t that.
I have taken the first COVID shot (Moderna) and it was no problem. Had a bump and some pain the next day but it was like any of the shots you get in a muscle. I take the second one tomorrow. Will let you know how that goes.

Jump to this post

Yes, the esophageal spasms mimic the pain of a heart attack and I have had several ambulance trips to the ER to rule out my heart! My doctors felt that the spasms were brought on by the use of prednisone. Unfortunately, I have been on prednisone steadily since Aug. 2017, so sometimes one thing to help heal, may be causing another problem!

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Not good! Sounds terrifying Kim. Sounds like time yo try something else. I was on Pred for two years at one time and found other big issues and had to come off. Moon face, hump back, periods of sadness, don’t think it was any friend to my liver either-not sure. But nothing compared to your experience. Hugs!

Liked by kimh

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