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

Interested in more discussions like this? Go to the Digestive Health Support Group.

@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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@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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@vdouglas Yes, I’m happy to answer any questions I can about Mayo Rochester and my experience there.

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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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@lockedavid, Thank you!

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Hello everyone, I’m not sure if those of you in countries other than the U.S. celebrate Thanksgiving but even if you don’t we all have something to be thankful for so Happy Thanksgiving everyone. Remember, don’t over do it!

@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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What is the treatment dose?

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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 @mostafaamin, Welcome back. I hope you doing well. I am not a Doctors but would like to help with any information we can provide. Here is a link to some information. Please let me know if you have problems opening. Please see “Table 4”, http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf

Best regards,
@vdouglas
Von

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@kimh

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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Hello @kimh , How are you doing? I was just wondering if you had anything you could share with the group regarding your appointment with the specialist in November.
I hope you are doing well.
@vdouglas
Von

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@kimh

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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Hi Von (and everyone else on the forum!)
I hope you all had a wonderful Thanksgiving.
I did want to catch you all up on what path I am on. I went to my gastroenterologist and he said that he wanted to do further research on MP, so in the meantime, he has put me back on the Prednisone beginning at 40 mg. for three days and decreasing by 5 mg. every three days. Tomorrow I begin on 25 mg. He is hoping to put me on azathioprine (immune suppressant medication) if it will work for my body alongside a low dose of Prednisone. He sent me for a slew of blood work and I am still waiting on those results. Unfortunately, I have to wait until the 19th for my next appointment and though my nausea has subsided, but I am still in pain. Having my pain medication prescription renewed has been troublesome because of pressure being put on the medical system to cut down opiate use. For the past two weeks, I have basically been bedridden, eating small snacks (rather than a plate of food for a meal….it doesn’t matter because I don’t have much of an appetite despite being on prednisone) and taking warm baths to try to help with pain management. I find nights to be bad as the pain awakens me while I try to find a comfortable position to try to sleep. Has anyone else noticed that laying on one’s right side seems to cause discomfort? Actually, at this point I am feeling frustrated and down as I see life passing me by while I lay on the couch. Sorry for the novel…..again…

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@kimh

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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Hello @kimh , Thank you for the novel! I appreciate the information and I’m sure others are learning from it as well. It’s good to hear from you. Sorry to hear you are still dealing with the ill effects of the inflammation or sclerosis but the nausea has subsided which is a big plus. Maybe without the nausea the appetite will come back so that you might gradually increase your food intake. Warm baths are a really good Idea I had not tried that during my episode. My left side was the direction that helped me the most as you mentioned. I continually tried to find that sweet spot. I had to sit and sleep upright in the corner of the couch twisted to my left side, a little difficult to describe. My right flank and lower right belly area is where I had the pain.
If all else fails “Tramadol” is still easy to get for now but it is not very effective for pain unless you can get the maximum dose prescribed.

It’s easy get the feeling life is passing you by especially when in your situation but you are strong enough to get through this and remember, tomorrow is a new day, we’ll pray it’s the day the pain starts to subside.

Please keep us posted, we do care. Best wishes on the 19th.
@vdouglas
Von

Any thoughts to share? @lockedavid , @poppy73 , @pcfromfm , @joyful1

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