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: 163
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: 163
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.
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jarnold246
@jarnold246
@jarnold246
Posts: 11
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 14, 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?
I had an adrenalectomy due to a benign growth september 2018, I presented with stabbing like pains in the front left flank, ct scan showed the tumour. I though aha! My pain has a reason. Off I trotted to get it removed, success. But,one year on, the pain is STILL there, my doctor said it’s healing pain.. I called it BS, so demanded another CT scan, Mesenteric Panniculitis diagnosis. I WAS RIGHT, something WAS wrong!. Referred back to surgeon, now on Category 2 wait list, all he needs to do is prescribe me the correct meds so I can breathe comfortably and not feel like I have to constantly stretch my left side out… in my mind, I think it helps, but really, nothing does, no amount of stretching this way or that! but, I know, there’s procedures I must jump through hoops….. so, for now, I take whatever pain relief I can find. CBD oil, but not seeing a change, but its only been a few weeks…. hurry ups dr! Im in australia.
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!
Prednisone, its a sleep killer, take it as soon as you wake, that is if you get to sleep at all. I find it makes you extremely productive.
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I had an adrenalectomy due to a benign growth september 2018, I presented with stabbing like pains in the front left flank, ct scan showed the tumour. I though aha! My pain has a reason. Off I trotted to get it removed, success. But,one year on, the pain is STILL there, my doctor said it’s healing pain.. I called it BS, so demanded another CT scan, Mesenteric Panniculitis diagnosis. I WAS RIGHT, something WAS wrong!. Referred back to surgeon, now on Category 2 wait list, all he needs to do is prescribe me the correct meds so I can breathe comfortably and not feel like I have to constantly stretch my left side out… in my mind, I think it helps, but really, nothing does, no amount of stretching this way or that! but, I know, there’s procedures I must jump through hoops….. so, for now, I take whatever pain relief I can find. CBD oil, but not seeing a change, but its only been a few weeks…. hurry ups dr! Im in australia.
Edited to add: previous abdo surgeries- ceasarean x 2, 2001 & 2007, gastric sleeve (2015). This pain started July 2018 and hasn’t left!
I was diagnosed two days ago. I was in a great deal of pain on my left side. The ER took a CT and diagnosed me then with MP. I have basically have had nothing but broth and some rice for the past two days. They put me on Meloxicam 15 mg. I need to follow up with my physician. What other foods do you think are ok for me until then? I seem to be having a lot of gas with this too. Is that normal?
I was diagnosed two days ago. I was in a great deal of pain on my left side. The ER took a CT and diagnosed me then with MP. I have basically have had nothing but broth and some rice for the past two days. They put me on Meloxicam 15 mg. I need to follow up with my physician. What other foods do you think are ok for me until then? I seem to be having a lot of gas with this too. Is that normal?
I have IBS, so gas is the norm…. meloxicam works fast. I used it for my tennis elbow pain… but if MP causes gas, Ive got it in spades!
Liked by charread
@racecar46
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