Mesenteric Panniculitis or Sclerosing Mesenteritis

I am glad that you were able to find the help you needed! I am also happy to hear that the Mayo Clinic will be sharing their expertise with your GI. This is very important. I am the only patient with MP for my GI and GP and together, we have been trying to get my body back in remission. I have been able to learn a lot from this forum regarding possible medications. The only one that I don't recognise is 6mp. Is this an immuno suppressant medication?

I am on a long term disability at the moment. I have not been able to attain remission since August 2017 and am too symptomatic to consider a return to work at this point. The insurance people don't seem to understand this disease. One person actually told me that it's so unusual for me to have MP for so long! I have spent a few hours trying to describe this disease and even referred them to this site!

Hello @kimh

You had a question about 6MP. This is a med that was originally developed as a chemo treatment for cancer but has been found to help a lot of people with other colon related disorders. Here is some information about it on the Crohn's and Colitis Foundation website, http://www.crohnscolitisfoundation.org/resources/maintenance-therapy.html. Here is a quote about this med:

"6-mercaptopurine (6-MP, Purinethol®) and azathioprine (Imuran®) have been increasingly utilized to take IBD patients off steroids, and to keep them off. They are also beneficial in the treatment of some patients with Crohn's disease who have fistulas. Both of these drugs are effective in treating active IBD and in maintaining remission, and are relatively safe. However, patients taking these drugs must be carefully monitored for signs of a decrease in the number of blood cells, or inflammation of the liver or pancreas. Although it was initially feared that patients given these medications could be at increased risk for infections or certain types of cancers, this has not been conclusively demonstrated.

Although these drugs can be expensive, the required daily dose is low. Patients needing these medications to achieve remission will often suffer a relapse of disease when the medications are stopped; thus, many physicians recommend long-term use as maintenance therapy—in some cases even during pregnancy."

Another member of this discussion group, @guener, has also mentioned using it.

Thanks for the information! I am currently on azathioprine and I seem to be tolerating it so far. I'm also on tamoxifen and weaning down on Prednisone. I'm hoping that this will be the successful cocktail! I have been on Prednisone since August 2017. I had another ct scan about a week and a half ago. My scan shows that everything is the same as my previous scan in 2017, which is good news that things haven't progressed, but that nothing has 'regressed'. Is it possible for the inflammations to reduce in size? I would love to get off of the steroids. I have just been diagnosed with severe osteoporosis and I have a feeling that prolonged prednisone use may have been a contributor.

Have you considered a second opinion at a Mayo facility, @kimh? They really do have experts there.

@hopeful33250 Hi I just wanted to let you know Teresa with my chair exercises I started to do some Tai Chai at the end of exercises to calm and cool down. Thanks again

@lioness Good to hear!

I have strongly considered coming to Mayo. My doctors are concerned about the cost for me as I am from Canada. I'm not sure that the Mayo Clinic can offer me anything different as far as treatment goes to be honest.

@hopeful33250 o.k.here it goes See what you think. Why Connect. We have a variety of pain,back,stomach ,nerve but we fight to keep us sane ,also those ugly beasties ,anxiety,panic,depression, being overwhelmed,those beasties,push them down into the ground .
It's through Connect that we do CONNECT. We all care for each other ,share with each other and it starts by opening up
And emptying our cup.
So be grateful everyday for your blessings everyday ,if you just want to talk
that's o.k.

I like it, @lioness!