Mesenteric Panniculitis or Sclerosing Mesenteritis

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

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

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.

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.

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

Adele Jones

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

Thanks.

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

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.