Hi Mike,
I'm so sorry you are still dealing with this. I'm not sure if it's MP or SM that you're dealing with, but I can tell you my experience with my MP. It definitely felt better when I kept moving. I work out every morning, but when the MP was flaring, I couldn't run, it was too jarring. So I walk instead. Sitting and laying down I felt more pain. I was on Prednisone for about 2 1/2 months. I started with the 40 mg for a couple of weeks and then was slowly weaned off 3-5 milligrams at a time. The Prednisone did help me a lot. My lymph nodes in the mesentery definitely shrunk. I put back on weight because I was eating again. The FODMAP diet was very helpful for me. I tried one vegetable at a time and waited a couple of days to see how that affected me. I found out no corn anything! No onions, cooked or otherwise. But I can eat scallions and shallots (cooked), but not a ton of them. I used onion powder to replace the flavor in cooking. I use a lot of spices and herbs. At least some of those are green. I have really good GI doctors/nurse practitioners in Mpls. Although MP is rare, they seem to know what they're talking about. The only side effect I've had from the Prednisone now that I am off it and have been since August, is I'm experiencing some hairloss. It is not uncommon, but is disconcerting, for sure. I was told that my hair would grow back in a couple of months. So until then, if that's the worst of what is happening, so be it. I am feeling much better these days.

I hope this has helped.

Roberta

Hi Roberta,

Thanks for the response. Yes, I'm dealing with MP.

I agree, moving/exercise keeps the pain in check. The more I move, the more I forget about it...and like I said, when I'm sitting it's the worse (and sadly I have an office job -- think I may invest in a standing desk for work).

Regarding the FODMAP stuff - where did you first hear about this? Why did you decide to start a diet for an unrelated condition (is it not for IBS sufferers?)

Thanks again,
Mike

My GI doctor & the nurse practitioner gave me the FODMAP diet guidelines. I was told it was for IBS sufferers as well as any inflammatory intestinal condition. It really has helped me a lot. I have an office job as well. I try to get up and stretch once an hour or so.

Hi there,I have had MP for over 5 years and<br> have been able to address the symptoms with diet.  I have never taken steroids even when I am was in terrible pain.  I have seen Dr. <br>Ehrenpreis in Chicago, who specializes in MP, and he is an amazing <br>doctor and basically said that if you can control it with diet then <br>don't take medicine.  All my research on the autoimmune side of MP (I <br>have been told that not all cases are autoimmune related) is that <br>everything is caused by a leaky gut.  This is why FODMAP works for so <br>many people.  I, on the other hand, used the Paleo Autoimmune protocol.  <br>It completely held things in check for me, and I would go on and off the<br> diet when symptoms arose.  Unfortunately, I cheated all summer which <br>led to some other issues, and the diet wasn't helping me as much.As<br> such I did more research and found other resources (in the field of <br>functional medicine) that have helped me control my symptoms again.  <br>Each person is different and their body's react to foods differently, <br>and as such if FODMAP doesn't work for you, read the articles of the <br>Paleo Mom.  She seems to look at things more scientifically, and <br>understands that some folks need to be on FODMAP and some just need to <br>be on an autoimmune diet. The great thing about the Paleo autoimmune <br>protocol is that you can add food back and you just figure out what your <br>body reacts to.  In addition to the Paleo Mom I recommend <br>listening and reading articles by Dr. Mark Hyman (who heads the <br>functional medicine department at the Cleveland Clinic) and Dr. Chris <br>Kresser.  In addition to dieting, I actually started taking the supplements recommended by Dr. <br>Chris Kresser (http://my.chriskresser.com/the-supplement-guide/) , and not only have my symptoms gone away, but for the first time in 11 years I no longer need to take Zantac 2 to 3 timies a day.In January, I plan on visiting with a Functional Medicine doctor and getting food testing.  Please listen to Dr. Kresser in that not all food testing labs are equal.   Unfortunately, it isn't covered by insurance and is expensive, but my positive results so far are giving me confidence that it is worth the expense.  I hope this helps at least one person, since it helped me.take care,Doron