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

@vdouglas

@pcfromfm , Thank you. Even though this disease cannot be cured it can be lived with and you show us that. We each find our own way of coping and as we share it with others we are each able to add something else to our “coping bag of tricks”.Some have terrible struggles and my heart just breaks for them because I have felt the pain, bloating, nausea etc. but generally it can be manageable as the “study 92 patients” shows us.
Again, positive minded people like you are a great inspiration for those that suffer so terribly and for each and every one of us.
Regarding your mention of family, I think a husband that will never retire is such a rare virtue in today’s world, you are very lucky. 14 grand children really shows that life has a great purpose.
Best wishes,
@vdouglas
Von

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You are so right @vdouglas-I have been totally blessed! His attitude and life’s direction has helped me work at picking up and motoring on! These sweet young ones keep me in “awe” everyday! I very seldom mention life’s struggles, except within this group. Thank you for helping me find a place to be able to share! I watch and listen for new info constantly, New hope for the future. I feel, most days, optimistic that there is no place to go but up, with ideas and medications to try to help. Thank all for giving me a spot to reach out to!

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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@pcfromfm ,You had inquired about automune in our family’s. My mother was recently diagnosed with Polymyalgia rheumatica, My sister recently with Fibromyalgia and my brother had an emergency resection, cause unknown, just researching that. A grandson with Vitiligo and many more suspected.
@vdouglas
Von

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@pcfromfm

Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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Can you please tell me what the symptoms are. I have many issues with my stomach and nothing doctors are doing are helping me. I had a large ulcer healed I have Barrett’s esophagus from GERD. I HAVE COLON POLYPS THAT HAVE TO BE REMIVED EVERY 6 months. I continue to have severe bloating and high stomCh pain on right side which radiates to back and right shoulder. No gall bladder stone detected. I am at wits end and don’t know where to turn anymore. Any advice appreciated. I hope you do well with your treatment for your problem. Just not sure what this entails.

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@pcfromfm

Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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I had stomach pain, aching and sore in a certain spot, plus cramps if I overworked in garden. Went to Dr who finally sent me for a CT scan. It showed a thickening in the mesenteric 7cm X 10cm and through the CT scan diagnosed it as Pannicuitus. After a few months and 2 more CT scans I was referred to Surgeon and had a biopsy through keyhole and the Panniculitus was confirmed. (also…No Lymphoma which they thought it might have been…thankfully) I am 65. Have to go on Predisenole and Tomoxifen for 2 months now.

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@pcfromfm

Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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Hello @nanny23,
Sorry to hear you are still dealing with a lot of digestive issues, that really stinks. With so many problems for so long, have you considered a visit to the Mayo Clinic? Maybe you have already been there I don’t know. A lot of the G.I. symptoms are going to be similar and without a really good experienced doctor making the diagnosis it could look like many types of disease. I am not a doctor and I am not saying you don’t have it but I would think that If you have had a CT or MRI and had Mesenteric Panniculitis or Sclerosing Mesenteritis to any significant degree it “should” have been mentioned in the report that follows.
My initial pain was very similar to kidney stone pain. Severe right side flank pain that would move to the belly. It was not surface pain but a deep internal pain. Attached is information on the symptoms, http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf
Please see Table 2 for the symptoms.
What do you think about a Mayo Visit?
@vdouglas
Von

Liked by Poppy73

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@pcfromfm

Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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They sent me in to for Lymphoma too.

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@pcfromfm

Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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My symptoms always begin as yours do. At first, the emergency department thought I had kidney stones that may have smashed from the fall I had as the symptoms began exactly two weeks after the said fall. And the deep internal pain (to me) feels like my intestines are ripping apart. But I agree with you. An initial ultrasound showed no evidence of kidney stones, but I was sent immediately for a CT that indicated either lymphoma or MP.

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@pcfromfm

Thank you @vdouglas! Very kind words! All of these posts help me to get and keep perspective on this crazy MP. Just feeling I am not alone anymore-worth tons of positive regard. I sure find lots of rest is the #1 key for me. Never easy but more so as I age, rest-as a state of mind as much as a physical state is imperative. I really have few evenings that include “plans”. Plans more then feet up and in some comatose state! I have 4 children and 14 grand children and a husband who will never retire but with that in mind—rest is still my first key! A positive, productive, creative state of mind -all good! Having no Doctor I must be my own manager as much as possible, at this point.

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Actually, that is my worry. Two years ago, I was sent to the Cancer centre here to see if I had any markers. I never got a call back (which they told me to take as good news). I’m not sure if I should be checked again (monitored periodically?) or if that test means that I will never have markers for lymphoma?

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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@kimh FWIW, I am 47 and I was diagnosed earlier this year. I’ve experienced symptoms since I was 31 years old. Looking at me, you would think I’m athletic and healthy and not in pain and struggling. There are stories in this and other groups of people diagnosed in their teens. Age may be a factor, but it certainly isn’t a determining factor. I think it is easy to accept (and, really, partially dismiss) disease when it is found in older people because that is “just part of aging” … but it is difficult to confront a chronic pain condition in younger patients because it is so difficult to understand and accept (even for physicians). YMMV, but that is my perspective on it …

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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I have to agree with you and to be honest, I have to wonder how many undiagnosed patients are out there. MP may not be as rare as we are led to believe. I have read that some people have it and never experience symptoms or that their symptoms resolve on their own. lol I’m only a little older than you, but what is YMMV?

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I visited Mayo Clinic in Rochester a few weeks ago and I thought others here might like an update or might find my experience useful.

I consulted with Dr. Suresh Chari and Dr. Darell Pardi. Dr. Chari will be directing my care in collaboration with Dr. Pardi, who seems to now focus on research and not on clinical care.

I can see why others have praised Dr. Pardi. He is very talented at describing what we know and what we don’t know about mesenteritis, what the research is saying, and how they think about directing care for the condition. We discussed my expectations and I described the impact of the condition on my life and what I thought we might be able to accomplish at Mayo (to increase my ability to live fully by, for instance, being able to exercise a little bit, but NOT to be pain free, or to “go back” to how I used to be, or even to have anything like a normal diet again). He said that I had “reasonable expectations” and that improving my quality of life was almost certainly achievable, which was good to hear.

They want to focus on low-risk treatments first and only move to treatments with more side effects and risks if we don’t have early success, which makes sense to me even though the first steps will be less aggressive than the treatment from University of Chicago Medicine, which I didn’t respond well to. They placed me on a ramp of Nortriptyline (on the basis that chronic pain conditions habituate the nervous system and mind to the experience of pain so that, regardless of the presence of absence of physical conditions, the mind experiences pain – which isn’t to say that they are claiming there is no basis for the experience of pain – and nortriptyline has been found to help in this regard although it isn’t the primary use of the medication) and a short trial of meloxicam (since I responded very poorly to the course of Prednisone I got from University of Chicago Medical Center) to see if I respond well to it.

Dr. Pardi also walked me through the long list of things we can try, the level of risk which they believe is justified by the level of impact of my condition, and how they would order the treatment options based on trying the lowest risk treatments first.

I also meet with Dr. Jon Tilburt at Mayo to talk about developing “mental resilience” and managing stress. Mostly I’m past the stress of thinking that I may be unable to work, which was the largest source of stress I had. Because my symptoms have improved over the last year due to diet, rest, and medication (extended release hyoscyamine having provide the essential ability to sleep enough to recover over the last 1.5 years) and because I spent a year talking to a good therapist about accepting that my life is now different (not better or worse, just different) I am managing pretty well now. Nevertheless, Dr. Tilbert provided a number of suggestions on things I might add to my “toolbox” to help me manage better going forward.

So that is my Mayo Clinic adventure so far. Everyone there was amazing and the facility is incredible. They are so thoughtful and caring and everyone I met was patient and helpful. They even took care of my family as I went to appointments. Oh, and I passed on the gratitude to Dr. Pardi that so many have expressed here and in the Facebook group.

Good luck to everyone as you manage this thing. I just wake up every day grateful to live another day and to be able to share experiences with the group here. I hope you are able to do the same.

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Thank-you. Can you keep us updated on treatment options? I am going to my specialist on Friday and I will also share what treatment plan he is going to put me on.

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@vdouglas

Hello @poppy73, how are you doing this evening?
Von

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@kimh It is possible it is under-diagnosed, but it is also possible to overfit symptoms to MP/SM. Dr. Pardi, at Mayo, told me about a study where they looked at CT scans taken from a random sampling of patients who were being seen for other conditions. About 25% of those patients had MP based on the CT scan. Because of improvements in CT scans, we are seeing the MP diagnosis more frequently, but most diagnosed patients have no symptoms, so it is unclear at this time (as far as I can tell) how prevalent this may be in the general population and what conditions lead to symptomatic mesenteritis. Right now, there is a lot of research to do and I’m grateful for institutions like Mayo Clinic that are pushing forward the boundaries of medical knowledge in this and other areas.

PS: YMMV = “your mileage may vary” … abbreviations are a bad habit I have from being on the Internet for essentially forever. 🙂

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@lockedavid

I visited Mayo Clinic in Rochester a few weeks ago and I thought others here might like an update or might find my experience useful.

I consulted with Dr. Suresh Chari and Dr. Darell Pardi. Dr. Chari will be directing my care in collaboration with Dr. Pardi, who seems to now focus on research and not on clinical care.

I can see why others have praised Dr. Pardi. He is very talented at describing what we know and what we don’t know about mesenteritis, what the research is saying, and how they think about directing care for the condition. We discussed my expectations and I described the impact of the condition on my life and what I thought we might be able to accomplish at Mayo (to increase my ability to live fully by, for instance, being able to exercise a little bit, but NOT to be pain free, or to “go back” to how I used to be, or even to have anything like a normal diet again). He said that I had “reasonable expectations” and that improving my quality of life was almost certainly achievable, which was good to hear.

They want to focus on low-risk treatments first and only move to treatments with more side effects and risks if we don’t have early success, which makes sense to me even though the first steps will be less aggressive than the treatment from University of Chicago Medicine, which I didn’t respond well to. They placed me on a ramp of Nortriptyline (on the basis that chronic pain conditions habituate the nervous system and mind to the experience of pain so that, regardless of the presence of absence of physical conditions, the mind experiences pain – which isn’t to say that they are claiming there is no basis for the experience of pain – and nortriptyline has been found to help in this regard although it isn’t the primary use of the medication) and a short trial of meloxicam (since I responded very poorly to the course of Prednisone I got from University of Chicago Medical Center) to see if I respond well to it.

Dr. Pardi also walked me through the long list of things we can try, the level of risk which they believe is justified by the level of impact of my condition, and how they would order the treatment options based on trying the lowest risk treatments first.

I also meet with Dr. Jon Tilburt at Mayo to talk about developing “mental resilience” and managing stress. Mostly I’m past the stress of thinking that I may be unable to work, which was the largest source of stress I had. Because my symptoms have improved over the last year due to diet, rest, and medication (extended release hyoscyamine having provide the essential ability to sleep enough to recover over the last 1.5 years) and because I spent a year talking to a good therapist about accepting that my life is now different (not better or worse, just different) I am managing pretty well now. Nevertheless, Dr. Tilbert provided a number of suggestions on things I might add to my “toolbox” to help me manage better going forward.

So that is my Mayo Clinic adventure so far. Everyone there was amazing and the facility is incredible. They are so thoughtful and caring and everyone I met was patient and helpful. They even took care of my family as I went to appointments. Oh, and I passed on the gratitude to Dr. Pardi that so many have expressed here and in the Facebook group.

Good luck to everyone as you manage this thing. I just wake up every day grateful to live another day and to be able to share experiences with the group here. I hope you are able to do the same.

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Wow-totally impressive! Sounds like an experience that could make such a difference. On my wish list- thanks for sharing this!

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@lockedavid

I visited Mayo Clinic in Rochester a few weeks ago and I thought others here might like an update or might find my experience useful.

I consulted with Dr. Suresh Chari and Dr. Darell Pardi. Dr. Chari will be directing my care in collaboration with Dr. Pardi, who seems to now focus on research and not on clinical care.

I can see why others have praised Dr. Pardi. He is very talented at describing what we know and what we don’t know about mesenteritis, what the research is saying, and how they think about directing care for the condition. We discussed my expectations and I described the impact of the condition on my life and what I thought we might be able to accomplish at Mayo (to increase my ability to live fully by, for instance, being able to exercise a little bit, but NOT to be pain free, or to “go back” to how I used to be, or even to have anything like a normal diet again). He said that I had “reasonable expectations” and that improving my quality of life was almost certainly achievable, which was good to hear.

They want to focus on low-risk treatments first and only move to treatments with more side effects and risks if we don’t have early success, which makes sense to me even though the first steps will be less aggressive than the treatment from University of Chicago Medicine, which I didn’t respond well to. They placed me on a ramp of Nortriptyline (on the basis that chronic pain conditions habituate the nervous system and mind to the experience of pain so that, regardless of the presence of absence of physical conditions, the mind experiences pain – which isn’t to say that they are claiming there is no basis for the experience of pain – and nortriptyline has been found to help in this regard although it isn’t the primary use of the medication) and a short trial of meloxicam (since I responded very poorly to the course of Prednisone I got from University of Chicago Medical Center) to see if I respond well to it.

Dr. Pardi also walked me through the long list of things we can try, the level of risk which they believe is justified by the level of impact of my condition, and how they would order the treatment options based on trying the lowest risk treatments first.

I also meet with Dr. Jon Tilburt at Mayo to talk about developing “mental resilience” and managing stress. Mostly I’m past the stress of thinking that I may be unable to work, which was the largest source of stress I had. Because my symptoms have improved over the last year due to diet, rest, and medication (extended release hyoscyamine having provide the essential ability to sleep enough to recover over the last 1.5 years) and because I spent a year talking to a good therapist about accepting that my life is now different (not better or worse, just different) I am managing pretty well now. Nevertheless, Dr. Tilbert provided a number of suggestions on things I might add to my “toolbox” to help me manage better going forward.

So that is my Mayo Clinic adventure so far. Everyone there was amazing and the facility is incredible. They are so thoughtful and caring and everyone I met was patient and helpful. They even took care of my family as I went to appointments. Oh, and I passed on the gratitude to Dr. Pardi that so many have expressed here and in the Facebook group.

Good luck to everyone as you manage this thing. I just wake up every day grateful to live another day and to be able to share experiences with the group here. I hope you are able to do the same.

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Hello @lockedavid , Welcome back and thank you for sharing your Mayo Clinic experience with us. Your remarks were very inspiring to me and it looks like a few others are impressed with your experience as well. I’m really glad that you were able to receive such exceptional care and most of all I’m glad that you are feeling better. You are sounding very optimistic since your visit. As @pcfromfm already mentioned, I think we could each appreciate your continuing feedback. Feedback coming from a group member that is an active patient at the Mayo Clinic is so important.

If you don’t mind, may I invite each member of the group to feel free to present to you their questions about your experience?

I like your comment that your life is “different (not better or worse, just different)”. We could all benefit from that kind of attitude toward the disease.
Best wishes to you for continued progress,
@vdouglas
Von

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