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

Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis. I thought the hospitalist was being melodramatic when he squatted down by my bed to say I had mesenteric panniculitis and he had to research it because I was the first patient he'd ever diagnosed with it. I'm sure the rest of you know how disparaging that can be, especially on top of the ridiculous pain. I am beginning my search for a GI doc who does not have to Google the damn thing. I'm on 40mg of Prednisone, Pepcid, and Tamoxifen (a breast cancer treatment, for some unknown reason). This pain giggles at Percocet for a few hours, then just laughs at it. I'm no stranger to pain, but this is a world of difference and it's truly beating me down. Thankfully, and sadly, it is a blessing to discover I am one of so few, but not alone.

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

Hi Teresa. I noticed a slight improvement towards the end of the 10 day course, but I'm now back to square one (actually getting worse pain and discomfort). Seeing my GI consultant next Monday, hoping for a longer course of steroids (8 weeks @ 40mg)

REPLY
@dementorshoes

Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis. I thought the hospitalist was being melodramatic when he squatted down by my bed to say I had mesenteric panniculitis and he had to research it because I was the first patient he'd ever diagnosed with it. I'm sure the rest of you know how disparaging that can be, especially on top of the ridiculous pain. I am beginning my search for a GI doc who does not have to Google the damn thing. I'm on 40mg of Prednisone, Pepcid, and Tamoxifen (a breast cancer treatment, for some unknown reason). This pain giggles at Percocet for a few hours, then just laughs at it. I'm no stranger to pain, but this is a world of difference and it's truly beating me down. Thankfully, and sadly, it is a blessing to discover I am one of so few, but not alone.

Jump to this post

Wow! You touched my heart and I'm sure the hearts of many reading on this forum! Just to give you another medication suggestion. I am also on azathioprine, which suppresses your immune system. I have was first diagnosed in March 2014 and ended up in remission for two years, only to have it rear it's ugly head in August 2017 and I have been off sick ever since. I also find that stress and climate are playing major roles in flare ups. I hope that you find something on this forum to help. At least you know that you are not alone.

Liked by dementorshoes

REPLY
@sneezy24

Hi Teresa. I noticed a slight improvement towards the end of the 10 day course, but I'm now back to square one (actually getting worse pain and discomfort). Seeing my GI consultant next Monday, hoping for a longer course of steroids (8 weeks @ 40mg)

Jump to this post

@sneezy24 I am glad that you noticed improvement with the steroids, but sorry to hear that you are now back at square one. It will be interesting to hear what your GI doc has to say.
Would enjoy hearing from you after your next appointment. Will you post an update?

REPLY
@dementorshoes

Well, it's a fairly ominous revelation when you end up here to learn about your diagnosis. I thought the hospitalist was being melodramatic when he squatted down by my bed to say I had mesenteric panniculitis and he had to research it because I was the first patient he'd ever diagnosed with it. I'm sure the rest of you know how disparaging that can be, especially on top of the ridiculous pain. I am beginning my search for a GI doc who does not have to Google the damn thing. I'm on 40mg of Prednisone, Pepcid, and Tamoxifen (a breast cancer treatment, for some unknown reason). This pain giggles at Percocet for a few hours, then just laughs at it. I'm no stranger to pain, but this is a world of difference and it's truly beating me down. Thankfully, and sadly, it is a blessing to discover I am one of so few, but not alone.

Jump to this post

Hello @dementorshoes and welcome to Connect.

You must be relieved to have a diagnosis for this painful condition. Yes, rare disorders are just that, very rare. You are fortunate that it was found so that you can find some appropriate treatment.

Are you near a Mayo facility (located in Minnesota, Florida and Arizona)? They have some great doctors who specialize in this disorder.

Please continue to post as you look for assistance in dealing with this new health problem.

You might find this YouTube video helpful. It was made by a patient at Mayo,

Liked by dementorshoes

REPLY
@kelseydm

Hi Eddie. So sorry to hear what you are going though. I know not having an answer must be really frustrating. Unfortunately, we can’t make specific treatment recommendations through this correspondence, but if you’d like to seek help from Mayo Clinic or get a second opinion, please call one of our appointment offices (Arizona: 800-446-2279 Florida: 904-953-0853 Minnesota: 507-538-3270). Hope you find some relief soon!

Jump to this post

Hello Kelsey, I have been diagnosed with sclerosing mesentary panniculitis. ive had ct scans and and mri. I live in florida and my GI doc has refferred me to Mayo in jacksonville. Do you have a contact there i can get in touch with? Thank you. I failed prednisone and budesonide due to side effects

REPLY

Update on visit at The Mayo Clinic in Rochester…,, we are finally home after 2 weeks! That trip was hard on me but so worth it! We have a concrete diagnosis of Sclerosing Mesenteritis….. I had an MRE, liver ultrasound, blood work and yet another colonoscopy. The docs were wonderful and everyone was very knowledgeable. My GI doc was excellent in communicating with me wether on phone, in person or on the portal! I will continue 40mg of Prednisone and 50mg of 6mp and will have blood work to check elevated liver enzymes as my liver is not tolerating it well….. Mayo will be working with my hometown GI as I am her first case to help her learn how to treat me ….. I hope this helps anyone who is thinking of going to Mayo!!!!❤️

REPLY

.What a great report @dmaquino . I am glad you had such a positive experience. It sounds like you made some great progress in treating this disorder.

Will you post periodically and update regarding your progress?

REPLY

Yes I will! I have a question, has anyone filed for social security disability eithbis diagnosis in the group

REPLY
@dmaquino

Update on visit at The Mayo Clinic in Rochester…,, we are finally home after 2 weeks! That trip was hard on me but so worth it! We have a concrete diagnosis of Sclerosing Mesenteritis….. I had an MRE, liver ultrasound, blood work and yet another colonoscopy. The docs were wonderful and everyone was very knowledgeable. My GI doc was excellent in communicating with me wether on phone, in person or on the portal! I will continue 40mg of Prednisone and 50mg of 6mp and will have blood work to check elevated liver enzymes as my liver is not tolerating it well….. Mayo will be working with my hometown GI as I am her first case to help her learn how to treat me ….. I hope this helps anyone who is thinking of going to Mayo!!!!❤️

Jump to this post

I am glad that you were able to find the help you needed! I am also happy to hear that the Mayo Clinic will be sharing their expertise with your GI. This is very important. I am the only patient with MP for my GI and GP and together, we have been trying to get my body back in remission. I have been able to learn a lot from this forum regarding possible medications. The only one that I don't recognise is 6mp. Is this an immuno suppressant medication?

REPLY
@dmaquino

Yes I will! I have a question, has anyone filed for social security disability eithbis diagnosis in the group

Jump to this post

I am on a long term disability at the moment. I have not been able to attain remission since August 2017 and am too symptomatic to consider a return to work at this point. The insurance people don't seem to understand this disease. One person actually told me that it's so unusual for me to have MP for so long! I have spent a few hours trying to describe this disease and even referred them to this site!

REPLY
@kimh

I am glad that you were able to find the help you needed! I am also happy to hear that the Mayo Clinic will be sharing their expertise with your GI. This is very important. I am the only patient with MP for my GI and GP and together, we have been trying to get my body back in remission. I have been able to learn a lot from this forum regarding possible medications. The only one that I don't recognise is 6mp. Is this an immuno suppressant medication?

Jump to this post

Hello @kimh

You had a question about 6MP. This is a med that was originally developed as a chemo treatment for cancer but has been found to help a lot of people with other colon related disorders. Here is 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."

Another member of this discussion group, @guener, has also mentioned using it.

Liked by kimh

REPLY

Thanks for the information! I am currently on azathioprine and I seem to be tolerating it so far. I'm also on tamoxifen and weaning down on Prednisone. I'm hoping that this will be the successful cocktail! I have been on Prednisone since August 2017. I had another ct scan about a week and a half ago. My scan shows that everything is the same as my previous scan in 2017, which is good news that things haven't progressed, but that nothing has 'regressed'. Is it possible for the inflammations to reduce in size? I would love to get off of the steroids. I have just been diagnosed with severe osteoporosis and I have a feeling that prolonged prednisone use may have been a contributor.

REPLY
@kimh

Thanks for the information! I am currently on azathioprine and I seem to be tolerating it so far. I'm also on tamoxifen and weaning down on Prednisone. I'm hoping that this will be the successful cocktail! I have been on Prednisone since August 2017. I had another ct scan about a week and a half ago. My scan shows that everything is the same as my previous scan in 2017, which is good news that things haven't progressed, but that nothing has 'regressed'. Is it possible for the inflammations to reduce in size? I would love to get off of the steroids. I have just been diagnosed with severe osteoporosis and I have a feeling that prolonged prednisone use may have been a contributor.

Jump to this post

Have you considered a second opinion at a Mayo facility, @kimh? They really do have experts there.

REPLY
@hopeful33250

Have you considered a second opinion at a Mayo facility, @kimh? They really do have experts there.

Jump to this post

@hopeful33250 Hi I just wanted to let you know Teresa with my chair exercises I started to do some Tai Chai at the end of exercises to calm and cool down. Thanks again

REPLY
Please login or register to post a reply.