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

I have been diagnosed with MP for a year, I had triple negative breast cancer 3 years earlier so they did not want to give me a steroid because of the danger of the cancer recurring. I have been on colcrys given to me by my gastro dr. My insurance refuses to cover the medicine now so I have been switched to colcrys/probenecid we will see how that works, is anyone else on this particular medicine. I also have Interstitial Cystitis and am following that diet. Eating is a challenge always. Loss of appetite because so much makes me sick. Would appreciate hearing anything to help. Thank you all and God Bless.

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Hello @susierq111,

I’m so sorry that you are going through all this, but glad that you’ve found the Connect community.

Here is some information from Mayo Clinic, about using probenecid and colcrys (colchicine) combination: http://mayocl.in/2mMTHmB

I found a few members who have been on colcrys for many different conditions; please meet @frankd696, @gonefishinmt @sbrooks1986 @lisas444 @santepublique @dkmeow @nancysm @healingheart @michellec78.

I would like introduce you to @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, who have talked about Interstitial Cystitis, and I’m confident that they will return with their insights.
You may also wish join this discussion “Interstitial Cystitis – I would like to connect with others” http://mayocl.in/2babJXN

@susierq111, probenecid is also used to prevent or treat problems that may occur if too much uric acid is present in the body; did your doctors give you an explanation for prescribing it? Besides diet, have you thought about physical therapy or bladder training to help find some relief from the symptoms?

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@kanaazpereira

Hello @susierq111,

I’m so sorry that you are going through all this, but glad that you’ve found the Connect community.

Here is some information from Mayo Clinic, about using probenecid and colcrys (colchicine) combination: http://mayocl.in/2mMTHmB

I found a few members who have been on colcrys for many different conditions; please meet @frankd696, @gonefishinmt @sbrooks1986 @lisas444 @santepublique @dkmeow @nancysm @healingheart @michellec78.

I would like introduce you to @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, who have talked about Interstitial Cystitis, and I’m confident that they will return with their insights.
You may also wish join this discussion “Interstitial Cystitis – I would like to connect with others” http://mayocl.in/2babJXN

@susierq111, probenecid is also used to prevent or treat problems that may occur if too much uric acid is present in the body; did your doctors give you an explanation for prescribing it? Besides diet, have you thought about physical therapy or bladder training to help find some relief from the symptoms?

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Hello MP group. By the miracle of tagging I was contacted by kanaazpereira on her Colcrys (colchicine) inquiry, above. I am in another rare disease group, familial Mediterranean fever, and colchicine is our gold standard treatment and therefore I know a lot about colchicine and its availability and its sources. FMF patients take colchicine everyday. If any of you in this group need access to colchicine, contact me because I have had to compile an exhaustive list of colchicine resources for our patients. Is colchicine taken by many of your patients or only a few? If it is an important treatment for MP then I will provide you with exhaustive information on colchicine. I do not see a way to leave an attachment with this message so if you want these documents send an inquiry to me. The FDA has made the US the worst country in the world for colchicine access. Colcrys is a brand name for one brand of FDA approved colchicine. The maker of Colcrys jacked up the price 50-fold. A second brand Mitiage got on the market but maintained the high price. Colchicine is cheap everywhere else in the world. The insurance companies – many of them – have stopped reimbursing colchcicine because of the unjustified price so many patients are led to believe that they have no choice but to pay these hyperinflated costs out of pocket. Not true. Most FMF patients now get colchicine – legally – from Canadian online pharmacies with a valid Rx. Instead of $5,000 /yr out of pocket they will pay about $300-$500 out of pocket. If a patient goes over the border into Mexico they can get the same thing for about $90 – this is legal and the Mexican colchicine is a legitimate brand. Colcrys has a very high adverse response rate in FMF patients. But we take it every day, forever. For patients taking it sporadically the response may not be the same. I have a list of Canadian online pharmacies where our US patients get their colchicine with contact info and comparative prices. Contact me for any further info about colchicine – and our best to y’all from the FMF community. [ This site blocks e-mail addresses if it is the first time you post so I can’t leave my e-mail address – if anyone wants further info post a message here with info on where I can send it]
Janine Jagger

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@kanaazpereira

Hello @susierq111,

I’m so sorry that you are going through all this, but glad that you’ve found the Connect community.

Here is some information from Mayo Clinic, about using probenecid and colcrys (colchicine) combination: http://mayocl.in/2mMTHmB

I found a few members who have been on colcrys for many different conditions; please meet @frankd696, @gonefishinmt @sbrooks1986 @lisas444 @santepublique @dkmeow @nancysm @healingheart @michellec78.

I would like introduce you to @tbeckys @cbs61752 @kas1792 @operationqueen @rdrdhap @suzette @barb54 @8dzaweek @lexi @jeananderson2014 @mgnunez75 @Weedy @praymond234 @mogulers @kerrilynn1 @jmgm @charlenem, who have talked about Interstitial Cystitis, and I’m confident that they will return with their insights.
You may also wish join this discussion “Interstitial Cystitis – I would like to connect with others” http://mayocl.in/2babJXN

@susierq111, probenecid is also used to prevent or treat problems that may occur if too much uric acid is present in the body; did your doctors give you an explanation for prescribing it? Besides diet, have you thought about physical therapy or bladder training to help find some relief from the symptoms?

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My gastro dr, has me on colcrys .6 1x daily and it controls the MP. My insurance co. Now refuses to cover it. My dr, read studies showing that colcrys controls the MP and I am grateful for that, please send me info on how I can obtain this medicine legally from Canada and I will get a written script from her, thank you very much and hope you do well controlling your FMF. Susan

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Susan, I need an e-mail address to send you the info as an attachment.. This forum will not let a new member post an e-mail address until after the 3rd message and I’m only up to 2 now. So if you respond with your e-mail address I can send it to yours from mine. Have you posted more than twice? I have an idea. I am going to try to trick the filter. Darn that’s a smart filter – I just tried and it didn’t work. I will post another message here until I reach the threshold.
JJ

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I hope I’ve reached the magic number let’s see. Nope, one more try coming up. JJ

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Susan, Here is my e-mail address
Janine Jagger

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Maybe this will work.

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I think I got past the filter, many thanks

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Welcome back to Connect @sante! A sincere thank you for all the support and information you are offering; I’m sure that @susierq111 appreciates it as well.

You will both notice that I removed your personal email from this public discussion. Posts to the discussion board are public, and we don’t want you getting unwanted spam. trolls, etc. We recommend sharing personal contact information by private message, as it is a secure, private option.

Here’s how to send a private message:
1. Click the member’s @username.
2. Click the envelope icon in their profile.
3. Write a subject and your message.
4. Click Send Message.

I also wanted to let you know that you can share websites publicly, and you will be able to do so after posting 3 messages. We restrict new signups from being able to post URLs to stop spammers and protect the community.

@sante, you’ll notice that Connect has been reinvigorated and is an active community again. And, we’ve got more updates and improvements coming soon, so do stay tuned; we’re glad to have you back!

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@shareie

I am in pain and in the er every 2 months….. moraphine,Nausea rx, prednisone…given at er t hen continue prednisone 5 days…I’m auto immune , still trying to figure out what involves and no one Dr wise can answer any questions…my intestines swell and I hurt base d during attacks which last until I get prednisone etc…..I am tired of routine uncontrollable routine I have every two months….what’s your advice and is this similarity to anyone? Have Been told my condition is very rare

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My husband was diagnosed with mp last September and now found a new doctor who said he needed a blood test to show he truly had this disease. The blood test has come back negative. Now when we were in the hospital for same symptoms they told him he doesnt have it or maybe never did or maybe after being on meds it just wont show. They told him he no longer has diverticulitis or diverticulosis. They are trying to tell him they think he has severe ibs but are doing nothing to help.

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@danrofohio

Dot,

Thank you for starting this. Right now, I am very discouraged because of my experience with mesenteric panniculitis. I was diagnosed in March of 2011 when excruciating abdominal pain caused me to vomit repeatedly, and I went to the emergency room at my local hospital. I had been having pain from the panniculitis for months or years, but I just ignored it until it became unbearable. A the ER called in a surgeon, because they were afraid of an aortic aneurysm. He order a CT scan and whoever read that made the diagnosis which the surgeon confirmed with endoscopic surgery.

The surgeon treated me for the next three months by starting me on a course of prednisone (40mg for a month, then 30, etc.). After the first month, my symptoms were bearable, and a follow up CT scan showed the mass to be smaller. However, subsequent scans showed no improvement, and my symptoms did not improve either. So the surgeon said that I needed to go on to a research hospital, and I chose on four hours away because their rheumatology and GI departments were rated as one of the best in the country.

On my first visit to the research hospital, I saw a gastroentoligist and a rheumatologist separately. The GI wanted me to see an oncologist which I did, and the rheumatologist presecribed azathioprine (Immuran) while continuing the predinsone. The oncologist didn’t find anything, and after making some adjustments with a very slow taper off the prednisone, my symptoms when away. I was virtually symptom free for eight months and had hopes of being cured and being able to go off the azathioprine.

Then about six or so weeks ago, the the symptoms came back. At first they were mild and rare. Now they occur multiple times per day and are very painful. Meanwhile, I needed to prepare for my next follow up with the rheumatologist at the research hospital in January. I was supposed to call the oncologist and ask him if I should get another CT scan. I did that about four weeks ago and left a message with his admin assistant. The office never returned the call, so I called back about two weeks later, and the assistant said she was going to call me that day, because the oncologist wanted her to ask me if I had CT scan recently. When I told her no, she said she’d pass that information along to the doctor and get back to me in a day. That was almost two weeks ago.

I could call the rheumatologist, but I don’t think he really understands why the panniculits is a problem. Based on our previous discussions, I seriously doubt that he has any idea what else to do to treat this. (He had one previous patient with mesenteric panniculitis, whom he treated with azathioprine.)

I would appreciate any suggestions that anyone has.

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….

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Hi again everyone! Well I had my surgery to remove the abdominal masses and they turned out to be lipomas. They were both benign. I have also been diagnosed with central sleep apnea so I was prescribed an ASV machine which I use every night. My MP is still active. I rarely have any appetite at all. So I force myself to eat. They have taken away several of the meds I was on with the intent of that being the reason for always being tired with heavy limbs, fatigued all of the time with no relief from a good nights sleep. Any advice on these continuing conditions? There are days when even getting out of bed is a chore. It’s getting very frustrating to not get any relief and for the doctors to not be able to get it figured out. I go for an electromyoggraphy and nerve condition test this week. The pain management doctor mentioned peripheral neuropathy or peripheral radiculopathy. The appt is this Tuesday so I will let you know how that turns out. Has anyone had these concerns/symptoms that you are dealing with?

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Good luck and keep us posted. I wish I had an answer for you. My MP comes and goes and I live in fear that someday they will say oh, we are sorry, but it is now cancerous and no chances left for me.

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@susierq111

Good luck and keep us posted. I wish I had an answer for you. My MP comes and goes and I live in fear that someday they will say oh, we are sorry, but it is now cancerous and no chances left for me.

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I have the same fear @susieq 111. One day thats going to be the diagnosis I get from my doctor.

Liked by ladycat

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