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!!
Bill
Interested in more discussions like this? Go to the Digestive Health group.
Hello, my name is Kim and I was diagnosed with MP in 2014 after having numerous CT scans and a surgical biopsy. I was prescribed 40 mg. of Prednisone for about 3 months and then tapering down for another 3 months at 5 mg. increments. By November of that year, I began experiencing severe esophageal spasms (which mimicked symptoms of a heart attack). and was diagnosed with GERD as well. I was put on medication for that, but once I was off of the Prednisone for some time, the symptoms disappeared.
Since this August, I have been experiencing a relapse of MP and was put on a less aggressive Prednisone therapy (40 mg. for 3 days, 35 mg. for 3 days and so on until I was done) in the hopes that we had caught it early. I felt better for a few weeks, but then the MP seemed to come back with a vengeance. This time, I was put on the same steroid routine as in August, but am staying on 10mg. daily until at least February. All doctors have agreed that aggressive Prednisone therapy (such as 2014) could cause do more harm than good. So unfortunately the esophageal spasms have returned and I am back on the GERD meds again! My GI was considering putting me on azathioprine alongside the low dose of Prednisone, but over the past three weeks, I have begun showing some improvement with my symptoms. My GI is hesitant to put me on another medication that may bring on another slew of side effects.
Though I am still on pain medication (slow release tablets), I have been able to do so many more things (at least in the early part of the morning and again in the early evening). I feel like I am gradually getting my life back and am hoping to get back to work (at least part time) at some point in February. To answer one of your questions, I felt it would have been impossible for me to not treat my MP. I had no life. And you should know that I absolutely hate being on Prednisone. The esophageal spasms, osteopenia, facial hair growth and weight gain (I am vainer than I should be!) always upset me, but at this point I have reconciled my feelings. After all, if I had cancer, I would not refuse chemo because I didn’t like the side effects that it would cause. These are tough choices for sure and I can only share my humble opinion.
If you do decide to try the azathioprine, could you keep us updated? I think many of us reach out to one another for advice, knowledge and suggestions. I am from Canada (so I don’t know about insurance coverage for medications, to answer your other question), but am always curious to find out what my “American cousins” are trying for treatments! This group has been very helpful to me, even if it is just to share my feelings and symptoms with others who ‘get it’. Sorry for the novel….I think others on this site are used to me by now! lol
Hi @fernandoparce,
Hope you are feeling better today? I wanted to share this story with you; it’s about a Mayo Clinic patient with the same condition, and how she has been managing her pain and other symptoms.
You can read the story by clicking on this link:
https://sharing.mayoclinic.org/2012/12/13/research-forges-path-to-effective-treatment-for-sclerosing-mesenteritis/
Please let us know how you are doing, and if you have any questions.
Thank you for sharing every little thing helps
Does MP mess with your colon from the constipation
Why did they do a biopsy and what is that for in kind of new at this and I got MP to and it bad.
I had to have surgical biopsy because they wanted to verify that it was MP and rule out cancer. I had been hospitalized for about a week and my inflammations had increased in size from one CT scan to the other. Waiting for the results was a little difficult, but at least we knew that we could rule out cancer. After a few more months, I was sent to the local cancer centre to check for lymphoma markers. I never heard back (which in Canada….no news is good news!).
What is Mobic?
https://www.rxlist.com/mobic-drug.htm
Hello Cindy @cconnors, I would like to add my welcome to the Mayo Clinic Connect. As Colleen posted many of the members, like you, have been living with this disease for quite some time. We understand what you are going through.
I read your post offering us a little bit of your history and I thank you also. Each of us has a similar story to tell so I can relate to your frustration and anxiety as well as the pain that you must be going through.
You have made a good choice to step back and advocate for yourself. It’s time to take a deep breath and look at things realistically. I was in pretty much the same position, although I never had the biopsy. In my case, I could see the doctors were not sure what they were dealing with. I knew that I had to find a doctor or facility that understood the disease otherwise they were going to be doing test after test. I’m not suggesting you stop seeing your current doctor but if you are uncertain, the following is what I did.
My research led me to the Mayo Clinic and I made the appointment online. I believe Kanaaz posted a link to the site but just in case you can’t bring it up you can go to the upper right corner of this page and click on “Request Appointment”. I chose the Mayo Clinic in Rochester because Dr. Darrell Pardi is part of the gastroenterology group at that location. I flew from Las Vegas, Nevada to the Clinic to get the best diagnosis available to me. I can tell you that when your CT scan is viewed at the Mayo Clinic, there is very little guess work. The most important part of diagnosing MP, in my opinion, is having a doctor familiar with mesenteric panniculitis viewing the CT scans then making a diagnosis and prognosis based upon experience rather than guess work.
I know how hard these decisions can be but you should only have to make this decision once.
You have my best wishes and support whatever decision you choose to make.
@vdouglas
Von
Hello @judy147, I hope you were able to enjoy a wonderful Christmas and I guess you have or will have a nice wedding to prepare for. I hope you are feeling better.
@vdouglas
Von
Hi @poppy73, I just wanted to give you a little bit more feedback on the fish oil. I have been on 2,400 mg since our last post and just had a blood test Tuesday. I have not increased the dosage until I confirm the exact amount with my doctor.
I have not noticed any reduction in joint pain or what little abdominal/flank pain I have, but I have notice an increase in energy. Could be a placebo effect or just getting more sleep but it is there for whatever reason. We’ll see what blood test numbers reveal.
Best wishes to you.
@vdouglas
Von
Hi everyone,
I have been keeping a detailed diary of my activities, pain level, diet and weather for the past week and have noticed something that I had been suspecting for some time. When there is a low pressure weather system coming in, my discomfort level from the MP seems to increase. Has anyone else noticed this correlation? My pains from MP are on my lower right abdominal quadrant and since my fall in 2014 (what I believe to be the trigger for everything!), my right knee and my right elbow have become so sore when a low pressure system moves into the area that it feels as though someone has taken a hammer and smashed my elbow and my knee cap. Since the fall, I have had to add a rheumatologist to my team of specialists! I find it odd that all of these maladies seem to be occurring on the right side of my body (though the brunt of my fall occurred on my lower left side of my back!) and all occurring after the trauma of the fall! I am beginning to wonder if the weather causes inflammation in the body generally (not just in joints such as the knee or elbow) and if it is complicating my recovery….