BillyMac65
@billymac65
@billymac65
Posts: 14
Joined: Dec 06, 2012
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
Liked by fishcox, Bhamilton, jimmymac, LS4 / Lisa Schwart Tulsa Oklahoma (FB page) ... see all
kimh
@kimh
@kimh
Posts: 156
Joined: Nov 15, 2017
That's good to know. I will let you know what I am on and leave it to your research skills lol. For the inflammation: Prednisone 5 mg. (I started out at 40 mg.), Tamoxifen 20 mg and Azathioprine 200 mg. (I have to get my blood tested because of this drug, I believe). For pain: Targin 5 mg and for breakthrough pain: Oxycodone. I have huge problems with sleep (the main suspect is the Prednisone), so I am also on a drop (0.2 mg) of THC before going to bed at night. I hope this helps!
That's good to know. I will let you know what I am on and leave it to your research skills lol. For the inflammation: Prednisone 5 mg. (I started out at 40 mg.), Tamoxifen 20 mg and Azathioprine 200 mg. (I have to get my blood tested because of this drug, I believe). For pain: Targin 5 mg and for breakthrough pain: Oxycodone. I have huge problems with sleep (the main suspect is the Prednisone), so I am also on a drop (0.2 mg) of THC before going to bed at night. I hope this helps!
Thanks so much for the information.
Hi – I'm new to this. Was recently diagnosed with mesenteric Panniculitis. I'm just starting to look into things and thought Mayo Clinic would be a wonderful place to start.
My symptoms started with having abdominal pain, upper center. Had an upper GI, no ulcers. Had a CT and found mesentery was inflamed. Had a colonoscopy, no big findings. Had a capsule endoscopy, given diagnosis of Mesenteric Panniculitis. I am now taking Prednisone to help with the inflammation. I'm waiting for my next office visit with Gastro to figure out what next steps are.
Any insight on this diagnosis would be greatly appreciated. Thank you!
musicflowers4u
@musicflowers4u
@musicflowers4u
Posts: 92
Joined: May 21, 2016
Hi all,
I’m new to this group as I recently learned via a CT (Sept 9th) that I may have MP. I’ve not yet had a biopsy so confirmation is still pending. We were going to perform a biopsy but the surgeon determined the location was too risky. He referred me for a second opinion but I have yet to schedule that appointment. Additionally, after consultation with my GP, we thought a watch and wait approach might be the best choice to see if my symptoms subside.
A little bio on me – I’m 56, Male with a history of Follicular Non-Hodgkin’s Lymphoma- Diagnosed in 2006 and in remission since 2007. I recently had my Gallbladder removed Sept -2018. Both may have played a role in the development and triggering of MP, purely a guess based on research.
My question for the group is, should I continue to watch and wait or is early diagnosis critical? I realize the MayoClinic is leading the charge with this disease and therefore pending symptoms and feedback I plan to schedule an appointment.
As for my status, I’ve noticed I’m very sensitive to stress i.e. stomach tightens when I feel a stress load, sensitive to certain foods red meat, chz, etc. so I've altered my diet, but other than that, my lower backache is the only consistent symptom I have and there I have arthritis so its somewhat expected.
I appreciate your thoughts and I pray for a cure to MP.
Liked by Kanaaz Pereira, Connect Moderator
kimh
@kimh
@kimh
Posts: 156
Joined: Nov 15, 2017
Hi David,
Welcome to the group! I'm not sure that you need to rush for the biopsy to be done. In your situation, considering your past health history, I would want a clear diagnosis. Are they treating you with medication? I am currently on Prednisone (5 mg), tamoxifen (20 mg) and azathioprine 200 mg. I hope this helps!
kimh
@kimh
@kimh
Posts: 156
Joined: Nov 15, 2017
No problem! I was diagnosed at 49 and after going through Prednisone treatment, I was in remission for two years! I almost forgot that I had MP. Anyway, after a very stressful time in my life, the disease reared it's ugly head and I have been battling to get back in remission for over two years now. I have good days and bad days. Acceptance was hard for me, but once I accepted that this is something I will probably always have, my mental state improved.
Liked by constancelee
jarnold246
@jarnold246
@jarnold246
Posts: 10
Joined: Aug 13, 2018
Heading to my first appointment at Mayo GI tomorrow. Any words of advice? I'm nervous that this is going to be a wasted trip, that I will be told it's all in my head.
Liked by constancelee
Hi there, saw your posts on here about SM and MP. We have a support group with 57 members if you’re interested. It’s a private group to be able to share, support, receive support, doc info, meds, etc. I’m a mom with a pediatric kid with SM. If you write back I can give you the contact info if you’d like. No, it’s not the yahoo group either. That site has information in files, but not a very good support based group and of sharing and talking. We have 57 members on ours!
I would like to join the support group please. I was recently diagnosed.
PCfromFM
@pcfromfm
@pcfromfm
Posts: 68
Joined: May 15, 2017
I would like to join the support group please. I was recently diagnosed.
Welcome jr8865! It’s always good to have one more of us communicating! I am in Canada and diagnosed many years ago by CT. How are you managing?
@gussypup333
Not yet. The urologist deferred me to my PCP, who is recommending I see a GI, who I am seeing next week.