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

Hello all. I was diagnosed last year with Mesenteric Panniculitis after a doctor decided to do a ct instead of ultrasounding my gallbladder. My Mom found me this page and have been reading on it for a year. I live in Michigan and have state insurance so I was finally able to go to U of M. They did another ct and now he says I don’t have it?!?!?!?!? When I first started reading the posts on here I was relieved because all the symptoms I was having all of you were too , didn’t feel like a freak anymore. I still cannot eat , so far 20lb loss in 4m, constant pain right under where my ribs separate and the awful stomach bloating. I become so weak and tired after a fit. I know I was is a full fledged fit (uncontrolled pain, vomiting and diarrhea) when they ran the ct on me. I was admitted and nurse said I was on a very high dose of morphine and I was still in pain, just manageable. My question is, has anyone else have this diagnosis taken back? And if so what do they say now? I’m left at the same place I was before my diagnosis, all these problems and no name for it

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@sneezy24

Hi Folks,

Name is Mick, from Reading, UK. 66 years old (almost 67!)
I had a gastroscopy and CT scan before Christmas because of abdominal discomfort/pain. I've had episodic heartburn/reflux for 10+ years, well controlled with Lanzoprazole.
The gastroscopy shows mild gastritis in the pylorus region, and a small hiatus hernia.
I got the CT scan results yesterday (phoned up and the letter had just been written!). I have mesenteric panniculitis!
Seeing my GI consultant on Monday 14th for more details and treatment plan.

Question: No. 1
I am allergic to penicillin, aspirin, food additives based on azo (coal tar) dyes. I am assuming that non-steroidal anti-inflammatory drugs will also affect me?

Question No. 2
I also have normal tension, open angle glaucoma. Steroids can raise the eye pressure (IOP). My left eye has had a trabeculectomy so shouldn't be a problem (the IOP is well down and in control), but my right eye is marginal on IOP even with drops.

Seems from this my treatment options may be somewhat limited.

Fortunately my eye consultant and GI consultant work in the same offices so hopefully they can talk to each other.

Don't let anyone tell you that getting old is great! It isn't!!!

Jump to this post

@sneezy24

Hello Mick and welcome to Mayo Connect!

You are right about the aging process, it certainly can be tough, especially when multiple health challenges seem to hit at once. It sounds like you have maintained a good attitude and you are working with your doctors to find relief. Keep that up!

The questions you have asked in your post might best be addressed by your doctors. As you may be aware, here on Connect most of us are not medical professionals, just patients like yourself. So, we cannot answer medical questions but we can offer our own suggestions as fellow patients who travel down the same road. So, as you read the posts in this discussion group you will see some of the things that people have learned about dealing with mesenteric panniculitis. You will read about dietary suggestions as well as meds that have helped others and other lifestyle changes that people have made in order to deal better with this disorder. I would also encourage you to watch the two videos in this discussion that were posted a day or so ago. The first one recounts a patient's own experience.

Given the fact that you also have Glaucoma, I would encourage you to also visit a discussion on Eye Conditions. Here is the link, https://connect.mayoclinic.org/group/eye-conditions/tab/discussions/?pg=4#group-507-activitystream.

I would be interested in an update on what suggestions that doctor has for you about dealing with this new diagnosis. Will you post again after your appointment on the 14th?

REPLY
@tjakgang

Hello all. I was diagnosed last year with Mesenteric Panniculitis after a doctor decided to do a ct instead of ultrasounding my gallbladder. My Mom found me this page and have been reading on it for a year. I live in Michigan and have state insurance so I was finally able to go to U of M. They did another ct and now he says I don’t have it?!?!?!?!? When I first started reading the posts on here I was relieved because all the symptoms I was having all of you were too , didn’t feel like a freak anymore. I still cannot eat , so far 20lb loss in 4m, constant pain right under where my ribs separate and the awful stomach bloating. I become so weak and tired after a fit. I know I was is a full fledged fit (uncontrolled pain, vomiting and diarrhea) when they ran the ct on me. I was admitted and nurse said I was on a very high dose of morphine and I was still in pain, just manageable. My question is, has anyone else have this diagnosis taken back? And if so what do they say now? I’m left at the same place I was before my diagnosis, all these problems and no name for it

Jump to this post

Hello @tjakgang and welcome to Mayo Connect,

I am sorry to hear of your constant symptoms and that you are now lacking a diagnosis as well. You must feel very frustrated. When you were formerly diagnosed with Mesenteric Panniculitis what type of treatment were you getting? Did it help?

As you read about the experiences of others, many people have not had a correct diagnosis for a long time. Did the doctors at U of M offer any suggestions to treat your symptoms or suggest any diagnosis for these symptoms? Have you had a biopsy or colonoscopy done yet?

These are all questions to think about. At Mayo Connect, we are not usually medical professionals, just patients like yourself, so we cannot offer diagnoses, just share our own experiences and perhaps help you ask the right questions of your medical team.

REPLY

Hello all! I started the drug called 6mp today…. it’s an old chemo pill that is used to treat Crohn’s and colitis ……. but has had success in helping with symptoms of MP/SP! I’m very nauseated today…. anyone else with advice or had experience with this drug and the outcome? 😕

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Hello @dmaquino

I appreciate your update. I looked up some information on Mayo's website regarding the new drug that you are taking. Here is the link where you can learn more, https://www.mayoclinic.org/drugs-supplements/mercaptopurine-oral-route/description/drg-20064683.

I also found some information about it on the Crohn's and Colitis Foundation website, http://www.crohnscolitisfoundation.org/resources/maintenance-therapy.html. Here is a quote about this med:

"6-mercaptopurine (6-MP, Purinethol®) and azathioprine (Imuran®) have been increasingly utilized to take IBD patients off steroids, and to keep them off. They are also beneficial in the treatment of some patients with Crohn's disease who have fistulas. Both of these drugs are effective in treating active IBD and in maintaining remission, and are relatively safe. However, patients taking these drugs must be carefully monitored for signs of a decrease in the number of blood cells, or inflammation of the liver or pancreas. Although it was initially feared that patients given these medications could be at increased risk for infections or certain types of cancers, this has not been conclusively demonstrated.

Although these drugs can be expensive, the required daily dose is low. Patients needing these medications to achieve remission will often suffer a relapse of disease when the medications are stopped; thus, many physicians recommend long-term use as maintenance therapy—in some cases even during pregnancy."

I hope that others who have taken this drug will respond to your post with information about their use of Mercaptopurine (6-MP).

Did your doctor indicate that this would be a long-term (maintenance) treatment?

REPLY
@hopeful33250

@sneezy24

Hello Mick and welcome to Mayo Connect!

You are right about the aging process, it certainly can be tough, especially when multiple health challenges seem to hit at once. It sounds like you have maintained a good attitude and you are working with your doctors to find relief. Keep that up!

The questions you have asked in your post might best be addressed by your doctors. As you may be aware, here on Connect most of us are not medical professionals, just patients like yourself. So, we cannot answer medical questions but we can offer our own suggestions as fellow patients who travel down the same road. So, as you read the posts in this discussion group you will see some of the things that people have learned about dealing with mesenteric panniculitis. You will read about dietary suggestions as well as meds that have helped others and other lifestyle changes that people have made in order to deal better with this disorder. I would also encourage you to watch the two videos in this discussion that were posted a day or so ago. The first one recounts a patient's own experience.

Given the fact that you also have Glaucoma, I would encourage you to also visit a discussion on Eye Conditions. Here is the link, https://connect.mayoclinic.org/group/eye-conditions/tab/discussions/?pg=4#group-507-activitystream.

I would be interested in an update on what suggestions that doctor has for you about dealing with this new diagnosis. Will you post again after your appointment on the 14th?

Jump to this post

Thanks @hopeful33250 , I will update after my Monday appt, probably Tuesday (busy Monday evening).
I think my diet is good, very little processed foods, lots of fruit and veg, red meat 1-2 times a week (and sometimes not even that).
Low refined sugar, low salt (I rarely add it to food), nuts and seeds and good cereals (oats, oat bran).
I'm seeing my eye specialist in 3 weeks so any suggested treatments I can run past him to see of any contra-indications.

I've also found the names of some specialists in the UK that are treating others with MP, so if my specialist has not seen it I can refer him – or even get myself to be referred.

Until I see my GI specialist, I don't know if it is him or the Radiologist that has diagnosed MP.

Pain is fairly constant at the moment, as is nausea, but bloating and feeling full has decreased.

More later!

REPLY
@sneezy24

Thanks @hopeful33250 , I will update after my Monday appt, probably Tuesday (busy Monday evening).
I think my diet is good, very little processed foods, lots of fruit and veg, red meat 1-2 times a week (and sometimes not even that).
Low refined sugar, low salt (I rarely add it to food), nuts and seeds and good cereals (oats, oat bran).
I'm seeing my eye specialist in 3 weeks so any suggested treatments I can run past him to see of any contra-indications.

I've also found the names of some specialists in the UK that are treating others with MP, so if my specialist has not seen it I can refer him – or even get myself to be referred.

Until I see my GI specialist, I don't know if it is him or the Radiologist that has diagnosed MP.

Pain is fairly constant at the moment, as is nausea, but bloating and feeling full has decreased.

More later!

Jump to this post

@sneezy24
Hi Mick: Good to hear from you. I'm looking forward to an update from you when you have time. Wishing you well.

REPLY

Update following my GI appointment, sorry it is late, I forgot we had visitors Tuesday!

I am going on a 10 day course of steroids (Prednisolone), and see what happens. If nothing, then next step is colonoscopy…

Specialist did say that diagnosis of MP is more common due to the improved resolution now attainable on CT scans.

REPLY
@hopeful33250

Hello @tjakgang and welcome to Mayo Connect,

I am sorry to hear of your constant symptoms and that you are now lacking a diagnosis as well. You must feel very frustrated. When you were formerly diagnosed with Mesenteric Panniculitis what type of treatment were you getting? Did it help?

As you read about the experiences of others, many people have not had a correct diagnosis for a long time. Did the doctors at U of M offer any suggestions to treat your symptoms or suggest any diagnosis for these symptoms? Have you had a biopsy or colonoscopy done yet?

These are all questions to think about. At Mayo Connect, we are not usually medical professionals, just patients like yourself, so we cannot offer diagnoses, just share our own experiences and perhaps help you ask the right questions of your medical team.

Jump to this post

@hopeful33250 no biopsy but have had colonoscopy, ct scan, ultrasound. I am already on a ton of other meds for my fibromyalgia/chronic pain. He did say if I wasn’t already on Cymbalta he would have put me on that.

REPLY
@tjakgang

Hello all. I was diagnosed last year with Mesenteric Panniculitis after a doctor decided to do a ct instead of ultrasounding my gallbladder. My Mom found me this page and have been reading on it for a year. I live in Michigan and have state insurance so I was finally able to go to U of M. They did another ct and now he says I don’t have it?!?!?!?!? When I first started reading the posts on here I was relieved because all the symptoms I was having all of you were too , didn’t feel like a freak anymore. I still cannot eat , so far 20lb loss in 4m, constant pain right under where my ribs separate and the awful stomach bloating. I become so weak and tired after a fit. I know I was is a full fledged fit (uncontrolled pain, vomiting and diarrhea) when they ran the ct on me. I was admitted and nurse said I was on a very high dose of morphine and I was still in pain, just manageable. My question is, has anyone else have this diagnosis taken back? And if so what do they say now? I’m left at the same place I was before my diagnosis, all these problems and no name for it

Jump to this post

I have had more tests done and they are now saying my Celiac Artery is 70% blocked. Having more test tomorrow to confirm

REPLY
@dmaquino

Hello all! I started the drug called 6mp today…. it’s an old chemo pill that is used to treat Crohn’s and colitis ……. but has had success in helping with symptoms of MP/SP! I’m very nauseated today…. anyone else with advice or had experience with this drug and the outcome? 😕

Jump to this post

Hi @dmaquino,

I’m tagging @guener as he had mentioned being on Purinethol (6-MP) for two years; I hope he will return to share his experience.

REPLY

Regarding Purinethol (6MP), I did take it for a period of time for my Crohn's disease, and it was effective for me in getting me off Prednisone. I think that I did have some nausea at the beginning when I took it, but that went away. I had monthly blood tests, and when it was shown that my white blood cell count had dropped to a very low level I was told to discontinue the drug. It's too bad that it didn't work for me as a maintenance medication, as it wasn't until many years later when I was put on Humira that my Crohn's disease was really brought into remission.

REPLY
@sneezy24

Update following my GI appointment, sorry it is late, I forgot we had visitors Tuesday!

I am going on a 10 day course of steroids (Prednisolone), and see what happens. If nothing, then next step is colonoscopy…

Specialist did say that diagnosis of MP is more common due to the improved resolution now attainable on CT scans.

Jump to this post

@sneezy24 Hello Mick, Just wondering how you are doing with your steroid treatment. Are you feeling any better, yet?

Hello @dmaquino Just wondering how you are doing with your new drug 6MP, notice any difference in how you are feeling or with side effects?

REPLY
@hopeful33250

@sneezy24 Hello Mick, Just wondering how you are doing with your steroid treatment. Are you feeling any better, yet?

Hello @dmaquino Just wondering how you are doing with your new drug 6MP, notice any difference in how you are feeling or with side effects?

Jump to this post

I’ve been on it for 3 weeks, the dr says it takes 2-3 month to really notice anything … I feel nauseated right now with it but that’s about it…: my ca 125 did decrease so that’s a plus. We are at The Mayo Clinic right now swing GI and surgeons. Will update when I know more…. ❤️

REPLY
@dmaquino

I’ve been on it for 3 weeks, the dr says it takes 2-3 month to really notice anything … I feel nauseated right now with it but that’s about it…: my ca 125 did decrease so that’s a plus. We are at The Mayo Clinic right now swing GI and surgeons. Will update when I know more…. ❤️

Jump to this post

Thanks for your update @dmaquino. I look forward to hearing from you when you know more.

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