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 too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

@bakb

I too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

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Hi bakb. We have a private Fb group if you’re interested with 340+ people all across the USA and multiple other countries. Would love to add you if interested. My contact info is in my profile here …My daughter diagnosed used with SM at Getting 14 and has 18 abd surgeries now from result if multiple bowel obstructions from sm. She’s now listing for small bowel and liver transplant due to it. (Loss of 100% colon and all of but approx 18″ small bowel. Been off/on TPN since 2008 and full time last three years. We have varying degrees of the disease in our group from mild to severe and unfortunately have lost five people in the last couple years with SM. Again, for anyone interested,please pm me or contact info on my personal profile. We have others near you could network you with for doc/facility info.

Lisa
Mom of great kiddo with SM diagnosed, age 14
#Rare Disease legislative advocate
#sclerosing Mesenteritis
#nord
#lifeofansmpatient

Liked by ladycat

@bakb

I too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

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Please add me to your support group. I am 67 yrs, old with mesenteric panniculitis and I had triple negative breast cancer so they hesitate to put me on steroids because of the chance of the cancer returning, I am on probenecid/cochine and niot sure yet how it will work. Flare ups are miserable as you know. Thank you for any aid.

Susierq111, I was linked to this group because the topic of colchicine came up in the MP group. My own rare disease is familial Mediterranean fever (FMF) and colchicine is our gold standard treatment and we have to know as much as possible about it. So I will jump in here if my experience with colchicine is useful to this group. The FDA has disrupted access to colchicine in the US as a result of incentives lavished on the drug companies – granting proprietary status in multiple special programs (orphan drugs, unapproved drugs). As a result of these programs only 2 brands of colchicine are on the US market and they have sustained a price increase that is about 50X higher than before these proprietary programs were implemented. In Jan of 2017 most insurance carriers stopped coverage for colchicine because of the unjustified hyperinflated cost – leaving patients to pay the hyperinflated price out of pocket. So that might be a situation that you are in.

There are 2 things to know. 1)The brand of colchicine called Colcrys (also called Prasco) has an extremely high adverse response rate of about 80% in FMF patients. So if you are taking Colcrys and you are not satisfied with the benefit you have gotten from it, then it is suggested to switch brands to Mitigare which does not have an extremely high adverse response rate. 2) However, if your insurance is not covering colchicine, and you have high out-of-pocket costs, many of our patients get their colchicine from Canadian online pharmacies. Paying full price out of pocket from one of these pharmacies will cost about 1/10 the out of pocket cost of the US brands. With a valid prescription from your physician this is within FDA regulations; it is legit and legal. We maintain a list with multiple sources but I will give you just one here: http://www.bigmountaindrugs.com.

One more point that may or may not be relevant to MP. Colchicine is taken different ways for gout vs FMF. For FMF we take colchicine every day to prevent periodic inflammatory attacks. Once an inflammatory attack begins it cannot be stopped by taking a high dose of colchicine. Colchicine effectively prevents attacks if it is taken consistently every day. Gout is different. When a gout flare begins gout patients start taking colchicine in escalating doses until the flare subsides. So gout patients take colchicine sporadically while FMF patients take it continuously. I don’t know which you do for MP but if you take it like gout patients I suggest that you try taking it continuously for enough time to see if it affects the pattern of attacks. I say this because there are now some suggestions that gout patients might benefit by taking colchicine as a preventive, like FMF patients. So it is worth a try to see if the way you take it has a different efficacy.

Finally, dose is an issue. With FMF symptom control is proportional to dose of colchicine. If your disorder is inflammatory then this principle probably relates to you. Often colchicine is under-prescribed, and if so there will be minimum benefit. With FMF, adults will get maximum symptom control at 1.5-2.0mg per day, and 2.5mg is the recommended upper limit. For the lucky patients who respond well to colchicine, it is an amazing drug – 4,000 years old. There are no long-term side effects. It can be taken for years and years with no harm. It comes from the seed of the autumn crocus so it even brings us beauty.

If you would like more info on colchicine feel free to send me questions or pop over to an FMF group.
Best regards,
Janine

@bakb

I too diagnosed 2011 with MP… have had flare ups often. When flare up occurs I go on regiment of Prednisone tapering off usually 2 weeks a fter starting. In SD so Mayo would be option but appointments are 5-6 months out for those with knowledge of MP. By then flare ups have subsided and the need to see doctor has gone. I am hopeful that answers for long term treatments can be found. Has anyone been given long term treatment and/or end results? @bakb

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I was diagnosed in October 2016 with MP. I saw a GI late December that has several patients. She put me on Meloxicam daily. She has successfully treated other patients with it. I started taking it in the end of December. It took about 6 weeks before I could see a difference in my symptoms. It has really helped! If I stick to my diet, my flares are becoming rare.

@kanaazpereira

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.

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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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First, I’ll just mention that there’s a spelling mistake in the group banner – sclerosing mesenteritis that might effect search results.

I wanted to add a few more comments in relation to some of the similarities between familial Mediterranean fever and MP/SM. Since your patients are sometimes treated with prednisone, that indicates that inflammation is part of your disorder. FMF is an auto-inflammatory disorder (not auto-immune) – the disease IS inflammation. Inflammation is our pathology and inflammation control is our treatment. Of the sites affected by inflammation, the most common is the serous membrane lining the abdomen. We have recurrent periodic inflammatory attacks (peritonitis) that look a lot like appendicitis. As an inflammatory disease, we are subject to inflammatory triggers, which are environmental factors (not part of the genetic pathology). Attacks can be triggered by emotional or physical stress, an infection, some dietary factors. Patients do a lot of trial and error of dietary factors to see if they can reduce inflammatory symptoms and attacks. Many patients, though not all, report significant reduction in inflammation on a gluten-free diet. This is not related to the specific genetic pathology but rather to the general mechanism of inflammation. For our patients it is worthwhile to do a short-term gluten-free diet trial to test whether it has a beneficial effect or not. In our case about 2/3 of patients who try the g-f diet subjectively benefit from it, about 1/3 do not. I cannot predict how your group would respond to a g-f diet but am reporting what our trial-and-error experience has been in relation to our inflammatory disorder.

@kanaazpereira

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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Thank you for the information. Is there a test to see if you have FMF?

Adele Jones

@kanaazpereira

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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Adele, I don’t know if MP or SM could be misdiagnosed as familial Mediterranean fever or vice versa so I don’t want to suggest that someone here with an MP or SM diagnosis could be a misdiagnosed FMF case (many of us with these rare conditions have struggled long and hard to get a diagnosis and I am not calling into question anyone’s diagnosis). I only suggest that since FMF is an inflammatory disorder that some of our treatment approaches in combating inflammation might be relevant to the inflammatory aspects or MP or SM.

That said . . . in answer to your question, here are the basics of FMF. FMF is a genetic disorder characterized by periodic recurrent bouts of inflammation most commonly peritonitis (abdominal pain) accompanied by fever. It is most commonly seen (but not always) in people with Middle Eastern ancestry (Arab, Jewish, Armenian, Turkish). It can also present as joint inflammation (asymmetrical joints) with rashes (on the lower legs). It is uniquely responsive to colchicine so a positive response to colchicine (in cases with typical symptoms) will confirm diagnosis. It most commonly starts in childhood but can first appear at any age. Specific mutations – there are hundreds now – can be tested for but new mutations are continuously being discovered and there have always been some patients in whom the known mutations have not been found so the genetic test is not absolute. FMF is very treatable with colchicine and the expectation is that patients will take colchicine for life.
Janine

@kanaazpereira

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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Thanks.

@dennisl27

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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John, I wish you all the best. Your symptoms sound so similar to mine. Diagnosed with MP a year ago via CT, now diagnosed with central sleep apnea and neuropathy (mainly toes). Thyroid, B12, glucose blood levels all okay. MRIs and EMG showed no radiculopathy . Just plain weird. Zofram gets me through the nausea and sometimes a Tylenol 3 for abdominal pain. Abdominal symptoms come and go. I suppose there are worse things in the world; but, the bad days are becoming more frequent. I am glad your lipomas were benign….that’s good news! ~Bill

@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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Please don’t give up your fighting spirit. There is always a reason and always help!! Everyone here is in your corner and fighting this with you !! Please stay in contact with all of us.

@dennisl27

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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Hi @dennis127, sounds like really good news regarding the surgery and it certainly sounds like you are making great progress getting help. Sometimes it is very frustrating waiting for a fix for some very complex medical issues. I think you had an appointment today? How did that go? I have never heard of an electromyography but will look it up. Got to look up the peripheral radiculophy also.
Hang in there and keep improving. You sound like you are doing better, I think that is a positive sign.
As always, best wishes for you and your wife.

Liked by ladycat

@dennisl27

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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Hi Von,
It is always so good to hear from you and I hope that you are doing good as well. I passed along your well wishes to my wife, she appreciated that. We are on a 3 week chemo therapy for her now, instead of weekly. It’s more of a maintenance dose until her next scans which are scheduled for May 8th. Then they decide next steps, depending on the progression of the cancer, or the lack there of (which is what is in our prayers). My electromyography and NCT (nerve conduction test ) went well yesterday. They basically stick needles in you and send shock signals to the nerve points to see what’s going on with the nerves in my legs and what’s causing the swelling, the pain and fatigue that’s keeping me from walking more than a few steps. I get those results back this Friday when I have a follow up appointment. The follow up appt is to inject my back with medial branch block epidural injections to assist with my lower back pain. I will let you know how it goes, what the results of the electromyography were and how the pain management injections went.
As always, thanks for your support and I’ll talk to you soon.
Dennis

@dennisl27

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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Hi Bill
Yea, our symptoms sound very similar. I am on an ASV machine for my central sleep apnea. It seems to be working for me. What are you using for your central sleep apnea? I get the results back from my electromyography this Friday to see what’s causing the pain and swelling in my legs? If it is indeed related to my lower back pain I have injections this Friday called Medial branch block injections. This is very frustrating because I used to be on my feet like 10-12 hours a day at work, now I have to use a motorized cart just to get around at the drugstore or grocery store. But like you said things could be worse. I had to file for Social security disability and should hopefully hear back from them soon. It’s humbling to be in this condition without any answers but we are trying. Prayers and a positive attitude get us thru each day and our motto is “the 2 days we won’t worry about are yesterday and tomorrow”.
I hope you continue to do well!
Best wishes to you!
Dennis

Just read on my ct report of earlier this month suggested I have mesenteric Panniculitis….have no idea about any of it.

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