Mesenteric Panniculitis or Sclerosing Mesenteritis
I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).
I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?
Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!
Interested in more discussions like this? Go to the Digestive Health Support Group.
H @vdouglas, I had some muscle spasms in my legs and feet while taking the prednisone. I drank Gatorade and used magnesium oil on my legs and both of those things helped. I got off the prednisone and my hair started to come out. The doctors said the hair would grow back in a few months. I’m glad that it didn’t some out in areas so I had bald spots. But it is a bit disconcerting to be washing your hair and have bunches wrap around your wrists and hands… But it seems to be subsiding a bit. I’ve started washing my hair with CliniCure and using the conditioner and treatment.
@shareie, Have you seen a GI doctor? I was on Prednisone for 2 months and then tapered off. I used the FODMAP diet and the swelling and pain subsided. MP is rare, but manageable. You have to find the right doctor and treatment program. Your primary physician can refer you to a GI doctor. Most everything is covered by insurance.
http://www.ibsdiets.org/fodmap-diet/fodmap-food-list/ This was very helpful to me. However, I’m not giving up garlic. When you irritate the intestines by eating foods that are too high in fiber, or various other problems, the intestine is going to get irritated and inflamed. when I was in the worst pain, I had a lot of chicken broth, baked potatoes, white pasta, white bread, white rice. In fact, the GI doctor said those things would help to calm the inflammation and irritation. It did. I lost some weight because I wasn’t eating how I used to. But I did try to add herbs so there would be some kind of “green” until I could start adding in vegetables again. I’d say it would be worth a shot. You have to be really careful what you eat and how much. Small meals or snacks are much better than the three big main meals most people are used to eating. I hope this is helpful.
Very helpful indeed, thank you!!
We have a gi doctor. Had scope/colonoscopy to see if they were missing anything. My husband is on bentyl, nortriptoline and something else. Just increased the meds because they aren’t working. He was on a strick diet for almost a month and that didnt help either. His stomach swells up alot. Has good days and bad days.
I wish I could be of more help.
I suppose losing one’s hair is not such a terrible sacrifice if the pain and inflammation goes away. I have heard that if you are diabetic it can really upset your blood sugar levels. Even if you aren’t diabetic, I have heard that it can. I have not heard about the hair loss. I hope everything works out well for you.Best wishes and good health to you.@vdouglas
@amyd,That is very frustrating. I really hope he can improve without the surgery. I’m sure everything seems kind of hopeless but there is always a chance things can turn around. I have read where that happens. Have hope and my best wishes are for your husbands recovery.@vdouglas
I am sorry. I am so tired that so many of us live in the Shadows and don’t have fulfilling active lives. I thought Toxic Mega colon, recurrent CDIFF and Neuropathy are bad. I now have Pancytopenia. Is it caused by meds….or auto-immune problems.
How do we bring our plights to national attention. I am tired of psotiasis ads and no new treatments that would get us back to leading normal lives.
Just diagnosed with this condition today as a matter of fact. Didn’t get a lot of info from the doctor. Going on a prednisone regiment. I’ve read through some of the comments here and will continue. Which leads me to my questions…
It seems the prednisone works well for most. Does anyone have experience with it NOT working and what steps occurred next for you?
Did anyone notice certain foods that made it worse than others?
Anything you feel is really important you would share to someone that just discovered they have this condition?
Thank you all in advance. 🙂