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

@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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@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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Thanks Von,
To be honest, this forum has been such a help for me and not only to learn about new treatments, but just knowing that you all get it and I’m not ‘strange’! And yes, when you described your sleep position, I envisioned it quite clearly! My pain is in the same areas as yours were. You did mention sclerosing which I thought is sort of a stage two of the disease. Is this something I should be discussing with my doctor? Is there a test for this? For pain, I had thought of tramadol or tylenol 2 or 3, at least to take the edge off. I’m going to send a text to my GP tomorrow to see what he thinks. I honestly don’t mind waiting for treatment as long as I can be a little more comfortable as far as the pain is concerned!
Kim

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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 @kimh,

If you are in a lot of pain, I recommend you try the autoimmune protocol of the Paleo diet.  Others have tried FODMAP, but the autoimmune protocol has done the trick for me.  I also had immense success with supplements for autoimmune conditions as recommended by Chris Kresser (http://my.chriskresser.com/the-supplement-guide/). I used to have the same sleeping pain.  Although my MRI still shows that I have the disease, I can say my bloating is gone and so is my pain. I don't take meds, but just go strict with my diet and my supplements. I realize not all folks have the autoimmune version, but these supplements are great for gerd and general gut health.

Hope this helps.

take care,

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@carbxbe8206

Can MP cause inflammation in other places besides you abdomen and colon area? Can MP make GERD or acid reflex worse?

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Hello @carbxbe8206 , How have you been?
I hope you are continuing to feel better. The last time we corresponded you were feeling a little better.
It would be good to hear from you.
Best wishes,
@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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@kimh

Being awakened at night has been a primary concern for me with this in terms of quality of life. Many people experience positional pain with mesenteritis. Some when lying down, others while standing or sitting. In my case, when sleeping in any horizontal position, my symptoms increase, and as my symptoms increase I wake more frequently and get less quality sleep.

For me, there are two things, primarily, that have helped with this:
1) Extended release Hyoscyamine (I use the brand name Symax Duotab), which was prescribed by a GI doctor.
2) Sleeping with my torso elevated. I use a Medcline wedge for this, but there are many different supports for this purpose available. An adjustable bed is probably the best option (my parents have one and they love it), although obviously expensive. I find that the Medcline works well for me.

I’ve also found that lying on the opposite side of the pain helps sometimes (my pain is on the left upper quad). Other times, stretching out my body on the side where the pain is helps. Using a heating pad on the abdomen at bedtime also seems to help me.

Keep in mind that this thing is a journey. Small steps forward in learning to live with it are significant.

I hope some of the advice here helps! Best wishes!

PS: In terms of being down, I’ve definitely been there. One thing that helped me enormously when I was feeling like my life was over was Toni Bernhard’s book “How to Be Sick.” She comes from a Buddhist perspective, but I feel like it would be helpful for anyone regardless of their individual beliefs.

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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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Keeping my body elevated may help and I will definitely ask my doctor about the hyoscyamine as well. I’m surprised that my body hasn’t taken to the prednisone as efficiently as other times and that is a little concerning for me. As for the lack of sleep, I am lucky that I am not yet back to work so I am not on ‘the go’ as I would typically be, but I have to wonder if being in constant discomfort is tiring out my body, which may be another contributor to lack of pain relief! Also, thank you for the heads up regarding the read. I will look into it for sure….

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Has anyone experimented with high doses of fish oil?

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I have not.

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