Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

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

@kimh

Hello @dementorshoes ! Yes, I have also had hysterectomy, oopherectomy and gall bladder surgery; not to mention surgical biopsy for diagnosis for MP! But, to be honest, I never felt that I had a problem with MP until two weeks after a nasty slip and fall on black ice (March 19, 2014….close to 5 year anniversary!!!). Two weeks to the day of the fall, I began experiencing symptoms, which my husband and the local clinic suspected that perhaps I had kidney stones that may have been shattered from the fall. The next morning, I was called back in to the clinic for an ultrasound and that is when some eyebrows were raised. I was then sent to the hospital downtown for a ct scan. The doctor did a physical abdominal exam (why do they do that???? It brings me to tears every time!) and asked if I was a smoker. I knew that was a 'cancer' question. When I told him that I am not, he just went, 'hmmmmm' and I thought, 'what the he**!!! I don't think this disease is brought on by smoking, but at that time they were juggling with the notion that either I had MP or lymphoma. I ended up in and out of emergency for pain management until I was just admitted. I had to ct's done in that time and my inflammations had grown over that six day period and that's when schedules were cleared and they did an emergency endoscopy and colonoscopy the next day and the day after that an emergency surgical biopsy which all came back positive for MP. After a massive 5 month dose of prednisone, I began experiencing esophageal spasms and was hospitalised for another 10 days to get things under control. I went into remission for two years. I actually began to forget that I actually had this disease, but August 2017, it reared it's ugly head. It was a very stressful and heartbreaking time for me (my dad suddenly came down with cancer while I was working full time and planning my first son's wedding!) and I have been battling it ever since. Today has been a rough day for me and I have seen that weather has been a factor in pain levels! That's a problem for someone living in this climate (Canada!). I am hoping that the azathioprine (200 mg. daily), tamoxifen (20 mg. daily), prednisone (4 mg. daily) and CBD oil might be the right 'cocktail' for me! I'm honestly sick and tired of beginning my day with so much medication, but I suppose if it helps, I shouldn't complain. I now have severe osteoporosis, which I think, in part can be attributed to the prolonged prednisone use. At least that's a shot once every 6 months, rather than a daily pill! Sorry for the novel…

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Hello Kimh, I'm posting this late but want to wish you well. Your post very much moved me. I'm praying for your Dad too. You seem to be going through so much. My MP experience- with the debilitating pain, nausea, diahrreah, back pain, fatigue, ect only began this past November 2018. Also the accompanying depression. I also had an abdominal surgery about 4 yrs ago- a 4 hr gallbladder surgery that was expected to take only 1 & a half hrs. ❤️

Liked by dementorshoes

@dinayo

Thank you! You have no idea how relieved and happy I am to have found you all. I very much wish you all well. The acceptance and optimism I sense here is comforting and inspiring. 💛

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Hi Dinayo, it certainly does help chatting to others who are going through the same trials. I had 2 CT scans and lots of blood tests. Then I was told that a biopsy was definitely needed to confirm MP and eliminate anything else nasty. Eg lymphoma . I had key hole and while doing the biopsy the surgeon checked my internals pretty well. I don’t know about CgA. They tell me MP is not a fatal disease, it’s an inflammation of the messentry….An immune disease, they don’t know much about. I continue to have regular blood tests. I have only been guided by the doctors from the beginning, even though they are limited in knowledge.
You said the ‘risks outweigh the benefit ‘ so not sure what your doctor is thinking in this regard. 🙏

Liked by dementorshoes

@jolied

Hi I’m a 67 y old woman with MP. Been on prednisone for about 5 mths, early last year. Also still on tomoxefen. Had to come off prednisone because it wasn’t good for my osteoporosis which I found out I had during the process. P makes it worse! Grew a little plumper in the face due to P, but not too bad. When coming off P I had to reduce amount very slowly over 6 weeks, as to not experience bad pain. ( although I had one week of bad hip pain). I am only on tomoxefen now, (although I am having a Prolia injection every 6 mths…this takes calcium from blood and puts it into bones). Generally stomach pain is not too bad…. I try and reduce any stress. Only other medication i take is calcium tablets and vit D prescribed by dr. I am under an gastroenterologist whom I see twice a year. He doesn’t know a real lot about MP. I live in Aussi. All the best, hope this helps.

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Hello jolied (& everyone), I hope you're feeling & doing well today. I want to thank you for reaching out with the very helpful advice. It does help to talk to others about this. I'm so scared about about the prednisone. My mother was required to take it for nearly a decade at 40mg/day and she repeatedly had eye ailments, got viruses, diabetes, ect. May I ask you and others what their daily doses were and how it affected them negatively (& also if positively). Also, is there an effective alternative to Prednisode I could do instead or is prednisone the first & necessary drug of choice in fighting the inflammation & disease. My best to everyone & I dearly hope no one is going through any suffering. 🙏💛

@dinayo

Hello jolied (& everyone), I hope you're feeling & doing well today. I want to thank you for reaching out with the very helpful advice. It does help to talk to others about this. I'm so scared about about the prednisone. My mother was required to take it for nearly a decade at 40mg/day and she repeatedly had eye ailments, got viruses, diabetes, ect. May I ask you and others what their daily doses were and how it affected them negatively (& also if positively). Also, is there an effective alternative to Prednisode I could do instead or is prednisone the first & necessary drug of choice in fighting the inflammation & disease. My best to everyone & I dearly hope no one is going through any suffering. 🙏💛

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Hi Di, hope you're hanging in there ok. This is such a cruel condition/disease. It's rarity makes it simply impossible to treat effectively. Due to pre-existing medical conditions, as well as a few brand spanking new ones, my PCP won't prescribe me Prednisone. It's an awful drug, but it does it's job most of the time. However, I'm not convinced it does much for MP. Currently, I'm only being treated for the nasty symptoms of MP. Pepcid, Bentyl, and Percocet. Instead of taking meds for nausea, I graze and tough it out. My current goal is to manage the pain enough to live as normally as possible. I've only been diagnosed since the end of January, but already resent the impact MP has had on my life. I'm holding out hope that I can get into Shands Hospital (a teaching hospital much like the Mayo Clinic) in North Florida soon. My newly discovered brain aneurysm has a recently tried to steal the spotlight from MP, and made me into a pain-in-the-ass patient with a little ticking time bomb in her head. Thankfully, my neurosurgeon understands the importance of getting the MP treated asap. I'm waiting for insurance and the hospital to approve the surgery on my little bomb, as it's so new that it's never been performed in this hospital before. So, I'm hoping to get to Shands for the MP in the interim. I'll gladly share how the specialist there goes about treating MP, once I get there. 😊 You hang in there. And remember, advocate for yourself!

@dinayo

Hello jolied (& everyone), I hope you're feeling & doing well today. I want to thank you for reaching out with the very helpful advice. It does help to talk to others about this. I'm so scared about about the prednisone. My mother was required to take it for nearly a decade at 40mg/day and she repeatedly had eye ailments, got viruses, diabetes, ect. May I ask you and others what their daily doses were and how it affected them negatively (& also if positively). Also, is there an effective alternative to Prednisode I could do instead or is prednisone the first & necessary drug of choice in fighting the inflammation & disease. My best to everyone & I dearly hope no one is going through any suffering. 🙏💛

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Hi Dinyo…..I was only on the steroids for 4 mths taking about 40 mg per day, then had to slowly come off because of my low calcium levels, as I mentioned earlier. Understandably seeing your mother on it for so long, has concerns for you, and I’m sure it must have been hard to watch someone you love go through those side effects. It was hard for you.
I believe short term though, is not so bad……. prednisode is an anti inflammatory drug , but don’t know of any other for an alternative. Sorry. Wishing you all the best 🙏

Liked by dementorshoes

@jolied

Hi Dinyo…..I was only on the steroids for 4 mths taking about 40 mg per day, then had to slowly come off because of my low calcium levels, as I mentioned earlier. Understandably seeing your mother on it for so long, has concerns for you, and I’m sure it must have been hard to watch someone you love go through those side effects. It was hard for you.
I believe short term though, is not so bad……. prednisode is an anti inflammatory drug , but don’t know of any other for an alternative. Sorry. Wishing you all the best 🙏

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Thank you💛

Liked by dementorshoes

@dementorshoes

Hi Di, hope you're hanging in there ok. This is such a cruel condition/disease. It's rarity makes it simply impossible to treat effectively. Due to pre-existing medical conditions, as well as a few brand spanking new ones, my PCP won't prescribe me Prednisone. It's an awful drug, but it does it's job most of the time. However, I'm not convinced it does much for MP. Currently, I'm only being treated for the nasty symptoms of MP. Pepcid, Bentyl, and Percocet. Instead of taking meds for nausea, I graze and tough it out. My current goal is to manage the pain enough to live as normally as possible. I've only been diagnosed since the end of January, but already resent the impact MP has had on my life. I'm holding out hope that I can get into Shands Hospital (a teaching hospital much like the Mayo Clinic) in North Florida soon. My newly discovered brain aneurysm has a recently tried to steal the spotlight from MP, and made me into a pain-in-the-ass patient with a little ticking time bomb in her head. Thankfully, my neurosurgeon understands the importance of getting the MP treated asap. I'm waiting for insurance and the hospital to approve the surgery on my little bomb, as it's so new that it's never been performed in this hospital before. So, I'm hoping to get to Shands for the MP in the interim. I'll gladly share how the specialist there goes about treating MP, once I get there. 😊 You hang in there. And remember, advocate for yourself!

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Thank you💛
You are a very kind, sympathetic, & generous human being & have been a great source of help to me as have the others on this board. I'm humbled & in awe at what you have gone through & continue to go through. I'm very much praying that you heal & will be well. 🙏💛

Liked by dementorshoes

@dinayo

Hello jolied (& everyone), I hope you're feeling & doing well today. I want to thank you for reaching out with the very helpful advice. It does help to talk to others about this. I'm so scared about about the prednisone. My mother was required to take it for nearly a decade at 40mg/day and she repeatedly had eye ailments, got viruses, diabetes, ect. May I ask you and others what their daily doses were and how it affected them negatively (& also if positively). Also, is there an effective alternative to Prednisode I could do instead or is prednisone the first & necessary drug of choice in fighting the inflammation & disease. My best to everyone & I dearly hope no one is going through any suffering. 🙏💛

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Hi @dinayo
I think we all understand how you are feeling about Prednisone and it's side effects. I now have osteoporosis and have to get a shot (Prolia) every six months. I'm also having a terrible time weaning down off of Prednisone. I started at 40 mg. and have been trying to wean down for well over a year. I actually got down to 1 mg., which was a big tease because I relapsed and basically had to start over. Last week, my dosage was upped from 3 mg. to 5 mg. because I was beginning to relapse again, and I have been told to stay on this dosage until I have been in remission for 4-6 weeks before we begin to fiddle with daily dosage amounts again. I'm also on 200 mg. of azathioprine and 20 mg. of tamoxifen daily. I am also on CBD oil as well. For nausea, I take Ondansetron (4 mg.) as needed. Also, as needed for pain, I am on oxycodone and a different pill in the family called Targin (I'm from Canada, so this might be a different name for my American cousins!) which is a slow release milder pill that has an anti constipating agent in it, I believe. This bout has been very difficult and I have been battling this relapse since August 2017. I wanted you to know all of the meds that I am currently taking, so that you may discuss options with your doctor and I hope that this information will be helpful. I have learned that this disease presents itself differently for all of us, but there are many similarities for sure! I experience good and bad days and am noticing that the weather (April and November are typically tough months!) and stress (or upset) are major factors in my pain level. Some people notice that a change of diet can be helpful as well. I hope this info helps you. You are definitely not alone.

Liked by dementorshoes

@kimh

Hi @dinayo
I think we all understand how you are feeling about Prednisone and it's side effects. I now have osteoporosis and have to get a shot (Prolia) every six months. I'm also having a terrible time weaning down off of Prednisone. I started at 40 mg. and have been trying to wean down for well over a year. I actually got down to 1 mg., which was a big tease because I relapsed and basically had to start over. Last week, my dosage was upped from 3 mg. to 5 mg. because I was beginning to relapse again, and I have been told to stay on this dosage until I have been in remission for 4-6 weeks before we begin to fiddle with daily dosage amounts again. I'm also on 200 mg. of azathioprine and 20 mg. of tamoxifen daily. I am also on CBD oil as well. For nausea, I take Ondansetron (4 mg.) as needed. Also, as needed for pain, I am on oxycodone and a different pill in the family called Targin (I'm from Canada, so this might be a different name for my American cousins!) which is a slow release milder pill that has an anti constipating agent in it, I believe. This bout has been very difficult and I have been battling this relapse since August 2017. I wanted you to know all of the meds that I am currently taking, so that you may discuss options with your doctor and I hope that this information will be helpful. I have learned that this disease presents itself differently for all of us, but there are many similarities for sure! I experience good and bad days and am noticing that the weather (April and November are typically tough months!) and stress (or upset) are major factors in my pain level. Some people notice that a change of diet can be helpful as well. I hope this info helps you. You are definitely not alone.

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Hi Kimh, I'm so sorry you're suffering like this. I really hope your surrounded by loved ones & support. Reading everyone's posts I'm just amazed at the strength & fortitude I see. You and everyone's amazing attitudes help me to "buck up" a little & try not to spiral into the fear of "what could be" & worst case scenarios. I so admire all of you. And thanks so much for the detailed description of your symptoms and meds. I fear the prednisone but it seems it may help me & I'm preparing myself mentally for this. Everyone's posts are helping to guide me in which direction to go & accepting this. Again, I so feel for you & hope your suffering ends soon. By the way, while a Californian, my grandmother was born Canadian & have family in Canada. Wonderful, kind,
good solid people! Our (Americans') "better halfs" in
many ways. Thank you for all your help. Please don't ever hesistate if you or anyone else on the board needs to vent, commiserate, or just talk. I'm here to listen & return the favor & be of help as everyone has been to me. 💛

Liked by dementorshoes

Hi @dinayo ,
What a nice post! I think most of us seem strong because we have been living with this diagnosis for a while. Someone on this site recommended a book titled, How To Be Sick by Toni Bernhard. This book helped me beyond belief! It comes from a Buddhist perspective and though I am not Buddhist, this book was written to appeal to anyone. Like you, I had to alter my mindset and concentrate on what I am able to do (though that may differ daily depending on my symptoms) rather than what I can no longer do. I also had to learn to limit my exposure to stressful situations and that was toughest on me because I had to learn to say 'no' or distance myself at stressful times. lol…I'm still working on that….

@dementorshoes

Hi Di, hope you're hanging in there ok. This is such a cruel condition/disease. It's rarity makes it simply impossible to treat effectively. Due to pre-existing medical conditions, as well as a few brand spanking new ones, my PCP won't prescribe me Prednisone. It's an awful drug, but it does it's job most of the time. However, I'm not convinced it does much for MP. Currently, I'm only being treated for the nasty symptoms of MP. Pepcid, Bentyl, and Percocet. Instead of taking meds for nausea, I graze and tough it out. My current goal is to manage the pain enough to live as normally as possible. I've only been diagnosed since the end of January, but already resent the impact MP has had on my life. I'm holding out hope that I can get into Shands Hospital (a teaching hospital much like the Mayo Clinic) in North Florida soon. My newly discovered brain aneurysm has a recently tried to steal the spotlight from MP, and made me into a pain-in-the-ass patient with a little ticking time bomb in her head. Thankfully, my neurosurgeon understands the importance of getting the MP treated asap. I'm waiting for insurance and the hospital to approve the surgery on my little bomb, as it's so new that it's never been performed in this hospital before. So, I'm hoping to get to Shands for the MP in the interim. I'll gladly share how the specialist there goes about treating MP, once I get there. 😊 You hang in there. And remember, advocate for yourself!

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Hi dementorshoes, as I told kimh, I want to also tell
you, jolied, & others what an impact you've made for me in such a very short time in helping to guide & advise me. Please do let me know how youre doing & coping. I dearly hope you allow me to return the favor & let me be an "ear" for you to vent or just talk to when & if you need to. Di💛🙏

Liked by dementorshoes

@kimh

Hi @dinayo ,
What a nice post! I think most of us seem strong because we have been living with this diagnosis for a while. Someone on this site recommended a book titled, How To Be Sick by Toni Bernhard. This book helped me beyond belief! It comes from a Buddhist perspective and though I am not Buddhist, this book was written to appeal to anyone. Like you, I had to alter my mindset and concentrate on what I am able to do (though that may differ daily depending on my symptoms) rather than what I can no longer do. I also had to learn to limit my exposure to stressful situations and that was toughest on me because I had to learn to say 'no' or distance myself at stressful times. lol…I'm still working on that….

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Thanks! Funny, I'm a
voracious reader but have been consumed for the last few months in a pity party of one & haven't read much. I will pick this book up & definitely read.
Sounds wonderful & exactly what I need. 😊📖

Liked by dementorshoes

I was the same way when I relapsed because it has taken so long to bounce back….if ever….so I have started reading again and I also began painting. This 'expansion' of myself has allowed me to put some value on what I am able to do and also provides me with something to focus on besides my physical health!

@dinayo

Hi dementorshoes, as I told kimh, I want to also tell
you, jolied, & others what an impact you've made for me in such a very short time in helping to guide & advise me. Please do let me know how youre doing & coping. I dearly hope you allow me to return the favor & let me be an "ear" for you to vent or just talk to when & if you need to. Di💛🙏

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Thanks Di, Yes we can all support each other which is wonderful. I also like the comments about refocusing on other things, like reading, painting etc. I love to garden and Autumn is a beautiful time of the year to be out and about, with trees turning all sorts of shades of reds, oranges and yellows. I limit myself though, and can't do what I used to, but still enjoy this wonderful pastime of pottering around, cutting back , mulching and even weeding. Yes, we can't let this condition get on top of us, we need to be always thankful for what we have and what we can still do. Prayers for you.

Hello, my GI informed me yesterday my recent MRI shows "some scarring" & that I'll likely have this disease for life. Is this the same as "fibrosis" and does it indicate I'm in the more advaced third stage of this disease? Also, is one more likely with this disease to acquire a cancer/malignancy throughout their lifetime? Does it mean a more shortened lifespan? In terms of medical care for MP/SM what is the usual yet best proactive approach from this point on regarding requesting preventative/beneficial/ repeated lab tests/ imaging scans/ or other? Thank you for any & all valuable advice/help/experience/suggestions & my best & prayers to all suffering from this. 🙏

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