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

@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

Jump to this post

I have had good luck with Meloxican. My doctor is a GI doc currently treating 4 patients with this therapy. It doesn't have the side effects of the prednisone and is much safer. I normally take it every two or three days unless I am having a flare, then I take it daily until things settle down. Between that and a strict diet it minimizes my discomfort and help keep the inflammation at bay.

REPLY

Hi @kimh,

Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report, and Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year. Here's more information about Mayo Clinic's approach:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

If you do decide to make an appointment at Mayo Clinic, you could do so by calling any one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I hope this helps.

REPLY
@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

Jump to this post

Have you heard of any other types of medications that are not in the family of NSAIDS or Steroids. I have a severe issue taking these types of drugs as I loose the ability to see. This is a rare but devastating side effect to NSAIDS and Steroids. I'm a unfortunate few who have this problem. Thank you for your time

REPLY
@kanaazpereira

Hi @kimh,

Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report, and Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year. Here's more information about Mayo Clinic's approach:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

If you do decide to make an appointment at Mayo Clinic, you could do so by calling any one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I hope this helps.

Jump to this post

I will keep it in mind, only that distance and cost are a non starter. I do read these post and I'm starting to see a commonality with many of MP patients. One is that MP, a rarity among auto immune disorders is also a precursor that some have noted either Lymphoma and or tumor growth that is happening after some years with MP. I'm also seeing here is that there are only a few MD's who are truly looking for and to help patients with this disease. Medications, as the condition (Auto Immune Disease) which signs and symptoms resulting in inflammation which is a response to something the body is working to repair and fix. Our disease (MP) is piggy backing off treatment for RA and other severe inflammations of the body and the medication that is prescribed to MP patients appear to have a primary link to RA etc. So, without asking for treatment over the internet, do you know of any other medications that are built to treat MP specifically or is MP just grouped into the (other type) of AI diseases. In the Northeast, it seems we treat a good share of oncology type diseases but do not focus of AI (auto immune) type diseases like the Mayo. However, after going through oncology from what of my more severe MP outbreaks, they were in the dark when it came to MP, and the fact that MP has a higher secondary affliction rate of lymphoma and tumor. But asking oncology what should my screening be because of my MP. One highly own MD with a high success rate of treating and curing lymphoma looked at me with a puzzled look saying there isn't any relation of MP and a higher rate of lymphoma or tumor cases. However, the NIH and other well known publications have even documented a higher rate of lymphoma of tumor cases. They just can't get the % down yet to anywhere from 28% to 42% higher chances.

REPLY

I was diagnosed last July in a CT with MP and finally was able to find a doctor that was knowledgeable in it. He ordered a MRI enterography with contrast which did not show any MP. He said it I did have it I don’t any more. The last couple of days I feel like I have something in my epigastric area. It is also a little sore when I press on it. I don’t have heart burn. I was wondering if this could be MP coming back? The last time I had pain in my flank area. Any thoughts would be appreciated. Thank you.

REPLY
@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

Jump to this post

Thanks! That's one medication that I hadn't heard about!

REPLY
@kanaazpereira

Hi @kimh,

Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report, and Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year. Here's more information about Mayo Clinic's approach:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

If you do decide to make an appointment at Mayo Clinic, you could do so by calling any one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I hope this helps.

Jump to this post

Thanks Kanaaz,
I hesitate only because I am concerned that there has not been a lot of research done and I would hate to get another opinion only to be taking the same medication that I am already on. I will read about the Mayo Clinic's approach though. I'm beginning to get frustrated with this bout (since August!).

REPLY
@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

Jump to this post

I have only ever been on Prednisone. Unfortunately, it has not been very effective this bout…

REPLY
@judy147

I was diagnosed last July in a CT with MP and finally was able to find a doctor that was knowledgeable in it. He ordered a MRI enterography with contrast which did not show any MP. He said it I did have it I don’t any more. The last couple of days I feel like I have something in my epigastric area. It is also a little sore when I press on it. I don’t have heart burn. I was wondering if this could be MP coming back? The last time I had pain in my flank area. Any thoughts would be appreciated. Thank you.

Jump to this post

Dear Judy,
I have just been diagnosed with MP and I am looking for a specialist in NYC. Who is your specialist? Any recommendations?

Thank you so much in advance!

REPLY

hello, I was diagnosed in 2016 but doctors at my hospital knew i had a mass on my abdomen since 2011 after complaints of pain and visits to the emergency they would diagnose me with anxiety for the pain. I started diabetes in October of 2016 and am taking metformin 2x a day. I have started noticing pain in my upper left abdomen which is new and my diabetes has been high, I have also having vision problems but don't know if it is related to the diabetes or diabetes caused by mesentery sclerosing affecting my pancreas. It is new to me this and the more I research I do the more confused I get so I hope someone can related if they have similar symptoms

REPLY

Hello @tonyleduc and welcome to Mayo Connect. Connect is a great place to share your concerns about health issues. While we are not medical professionals, just patients like yourself, we do offer a listening ear and support while you are seeking answers.

It sounds as if you have a number of problems that are causing you discomfort as well as concern and that is certainly understandable. Many of us at Connect, have had long-standing health issues that were difficult to diagnose and we pursued many avenues before getting to a correct diagnosis and treatment plan.

You do not mention having had surgery for the mass on the abdomen, is that something that has been considered? Have you considered a second opinion by a large research oriented hospital like Mayo or other university medical center? Complex problems are often best diagnosed and managed where there is research and many specialists who can sort through the different symptoms and reach a diagnosis and a treatment plan.

I would like to invite another mentor, @vdouglas, to this discussion. Perhaps he can add some of his own experiences to your post.

I look forward to hearing from you again.

Teresa

REPLY

Hello, I can’t agree more with Teresa that a research facility is the best place for help with problems like yours. Although my case was A-typical, I ended up at Mayo Clinic in RochesterMN in 2016 where I was diagnosed with Carcinoid Cancer after having been diagnosed with Messenteric Panniculitis in 2012 by local doctors. I had gone through many imaging tests in response to my complaints of pain over the years which only showed MP. The exploratory showed what images could not. Surgery saved my life. I am now followed at Dana Farber in Boston by a research oncologist. Wishing you success.

REPLY

Hello @musicflowers4u

I am so glad that you found the help that you needed at Mayo. This information about a second opinion could be very helpful to @tonyleduc

Teresa

REPLY
@hopeful33250

Hello @tonyleduc and welcome to Mayo Connect. Connect is a great place to share your concerns about health issues. While we are not medical professionals, just patients like yourself, we do offer a listening ear and support while you are seeking answers.

It sounds as if you have a number of problems that are causing you discomfort as well as concern and that is certainly understandable. Many of us at Connect, have had long-standing health issues that were difficult to diagnose and we pursued many avenues before getting to a correct diagnosis and treatment plan.

You do not mention having had surgery for the mass on the abdomen, is that something that has been considered? Have you considered a second opinion by a large research oriented hospital like Mayo or other university medical center? Complex problems are often best diagnosed and managed where there is research and many specialists who can sort through the different symptoms and reach a diagnosis and a treatment plan.

I would like to invite another mentor, @vdouglas, to this discussion. Perhaps he can add some of his own experiences to your post.

I look forward to hearing from you again.

Teresa

Jump to this post

No Teresa, they told me that I had this mass on my abdomen but I assume it wasn't an issue. They did a PET scan, which is where they discovered I had six lymph nodes which had increase in size. They followed those results with a biopsy it is then they discovered I had mesentery sclerosing.

REPLY
@hopeful33250

Hello @tonyleduc and welcome to Mayo Connect. Connect is a great place to share your concerns about health issues. While we are not medical professionals, just patients like yourself, we do offer a listening ear and support while you are seeking answers.

It sounds as if you have a number of problems that are causing you discomfort as well as concern and that is certainly understandable. Many of us at Connect, have had long-standing health issues that were difficult to diagnose and we pursued many avenues before getting to a correct diagnosis and treatment plan.

You do not mention having had surgery for the mass on the abdomen, is that something that has been considered? Have you considered a second opinion by a large research oriented hospital like Mayo or other university medical center? Complex problems are often best diagnosed and managed where there is research and many specialists who can sort through the different symptoms and reach a diagnosis and a treatment plan.

I would like to invite another mentor, @vdouglas, to this discussion. Perhaps he can add some of his own experiences to your post.

I look forward to hearing from you again.

Teresa

Jump to this post

@tonyleduc

I appreciate the additional information. Do you currently see a doctor who specializes in mesentery sclerosing? Regarding your diabetes, do you see an endocrinologist or an internist?

Have you given any consideration to a second opinion? I only mention this because it sounds as if you have questions that keep you concerned about your health and a second opinion by a good research oriented health system might put your mind at ease regarding your diagnosis as well as your treatment plan.

Here is some information about mesentery sclerosing treatment from Mayo's website, https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090 and https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/symptoms-causes/syc-20355087.

I hope that all goes well for you, Tony, and that you get enough information to make you feel comfortable about your treatment for mesentery sclerosing as well as the diabetes issues.

Teresa

REPLY
Please login or register to post a reply.