Mesenteric Panniculitis or Sclerosing Mesenteritis

Hi @kanaazpereira, thanks for all the tags! My Internist had his staff call this diagnoses to me. I asked for a copy of the report, which I got in the mail yesterday. They do say if I have any questions to ask, but I'm asking myself if there is really a reason to meet with him, or if I should move to a good GI Dr.. The radiologist seemed to be the one driving here, not the Internist.

Getting to your question, no. No medications have been brought up. I have read here some have taken prednisone and tomoxofin. I don't take anything for the pain, mainly because I hear long-term use of inflammatory drugs are not a good idea, plus I want to address this, not mask it.

I'm off to Mexico for two weeks here in a few days, extra concern there on the food/water. Will be interested to see how the lack of work stress and the relaxation play into this.

Thanks,
Mark

Hello, My name is Natalia, I am new here and I am 42. I have been diagnosed with Mesenteric Panniculitis and I don't really understand much about it, and I am trying to Conceive does anyone know of anyone who is/was pregnant with this or anything about getting pregnant? How will it effect me?

Hi All,
I had my six-month follow up CT Scan on Monday, March 6th. I just got the following note from my GI Doc: " CT shows residual haziness in the mesentery, but no recurrence of panniculitis. We will likely need to follow this in another 6 months, but we can discuss further at your appointment on Monday."

So I see the GI Doc next Monday. Good news, the lymph nodes aren't swollen. Bad news, which isn't so bad, is I have to have another CT in six months. I made the mistake of trying to eat something new a few days before my CT. Of course it set everything off. Damn it. If I'd only waited, maybe things would have been clearer. Who knows?! I figure the other good news is she didn't ask me to come in sooner than our scheduled appointment.

Anyone have an opinion?

@bertbiz

Hello @madeinheaven,

Welcome to Connect. I'm sorry about your diagnosis, but we are so happy that you've come here to find some support.

I'd like to introduce you to the many Connect members who live with mesenteric panniculitis. Please meet @billymac65, @mommasaid, @vdouglas, @doron, @ngilson, @bertbiz, @mardellepoff, @txbear and @miker46, @adelecj57, @amyd, @lynn1824, @winnah, @gmeg, @billindc, @pkrka, @marip, @angel11, @dotb.
Some, like you, were diagnosed recently, and other members have been managing the condition for quite some time. You may also wish to read the discussion here: http://mayocl.in/2eZsrdG.

I would also encourage you to see this patient story, and ongoing research done by Mayo Clinic with regard to Mesenteric Panniculitis (MP):
http://mayocl.in/2i5EIlB
@justjen822, had posted in the past about MP and pregnancy, and I sincerely hope she will return with some insight for you.
Natalia, have you discussed your wish to conceive with your doctors? What do they advise?

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.

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?

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

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

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

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