Mesenteric Panniculitis or Sclerosing Mesenteritis

I finally took my situation into my own hands and decided to reach out to Mayo to try to get in to see a GI doc there. I have an appointment in late Oct. I am looking for any advice about what to expect. I do not know what doc I will see yet, but am in the process of getting my imaging and notes from my GI doc here to bring with me. I would appreciate any and all advice. Thanks in advance!

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

I went to the Mayo in MN last June. I saw Dr. Pardi. I was originally diagnosed 11 years ago. I was having upper right abdominal pain and tightness. I had gallbladder test and colonoscopy to rule out issues there. It showed up on a CT scan. I was referred to a surgeon, who took biopsies to rule out cancer. After seeing several GI docs who admitted that they "were flying by the seat of their pants", I decided to be proactive. I would have a flare up once or twice a year. I was a 40 year old female and didn't seem to fit the mold of being a 60 year old male! haha. I took all of my CT scans with me to the mayo along with the surgical notes and biopsy results. I have had multiple CT scans since my original diagnosis. Parking at the Mayo was very easy, so was navigating the hospital. I dropped off all of my medical docs at my appointment time and they had me return a few hours later. I met with Dr. Pardi and he confirmed that I did have MP. He was optimistic that my CT scans had not changed much over the past 11 years. He said that he hadn't really met someone who has had it this long without it progressing. Knock on wood! He dictated a letter to me that I can give my local GI on what actions and medications I should try with flare ups and if they happen more frequently, I should return to see him. He was very nice and informative. My appointment was not rushed at all. Because I had so much of my medical docs, I only had to be seen that day. I wish you luck and if you have any other questions, please don't hesitate to ask.

Actually, I have a question regarding what medications have been recommended for flare ups? I am having a horrible time getting off Prednisone. Each time I wean down, even just half a mg., I have been relapsing and have to begin all over again! So frustrating!

Have you addressed this with your doctor, @kimh? Perhaps others in the group will share what meds work well for them.

I was in remission for two years and then it reared it's ugly head again! Currently, I have been battling this relapse for two years. I'm having great difficulty getting off the prednisone, though I am on a low dose. Most people here would suggest to keep stress levels low and I would agree 100%!