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.