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

@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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Hello @fernandoparce. I see that this is your first post at Mayo Connect – welcome!

While I don’t have Mesenteric Panniculitis I’d like to introduce you to @vdouglas, a volunteer mentor here at Mayo Connect as well as @kanaazpereira, Mayo Connect moderator. In addition, there are many Members in this discussion group who will probably help you with your questions.

Here is a website from NIH that discusses this disorder, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2726466/. NORD also has an article about this rare disorder on their website, https://rarediseases.org/rare-diseases/mesenteric-panniculitis/

If I may ask, has your doctor offered you any dietary guidelines to follow? Have you found any foods/drinks, and/or activities that tend to trigger your pain?

We look forward to supporting and encouraging you.

Teresa

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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Thank you @hopeful33250 (Teresa) and Welcome @fernandoparce (Fernando). First of all let me assure you that you can have mesenteric panniculitis and not have cancer.

Sorry to hear you are having the typical difficulty getting good information from your medical professionals. I have no medical training. I am a patient having been diagnosed with mild asymptomatic mesenteric panniculitis at the Mayo Clinic after a calamity of repetitive tests by my local specialists.
Treatment and prognosis are generally based upon a review of your CT scan by a doctor that is knowledgeable and familiar with Mesenteric Panniculitis. A large number of doctors are unfamiliar and just see a hazy, misty mesentery on the CT images.
It is possible to have this disease and not require treatment. If you do not have symptoms or have mild symptoms, with no underlying issues you may not require any treatment. Typically Prednisone and Tamoxifen are the first line of defense respectively.
Attached is another document that shares information with the NORD document that Teresa was so thoughtful to send you. Please review document here: http://www.cghjournal.org/article/S1542-3565(07)00224-8/pdf

Additionally this will show you the algorithm for treatment based upon symptoms. It also goes into detail about the progression of the disease. I found this document to be very encouraging. It does include information that is a little unnerving as with any medical descriptions.

You mentioned you are losing weight. If you don’t mind me asking, what are your symptoms right now? What medications are you prescribed?
Best wishes to you and thank you for sharing.
@vdouglas
Von

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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Hi @fernandoparce, You have a lot of good questions. I would agree that you should go to the NIH link that @hopeful33250 posted for you. Lots of good information there. Sounds like your CT Scan was clear, as was your Xray. Did they tell you they saw a “misty messentary”? To answer some of the questions, I don’t know much about question 1.
2) The diet I followed when I was diagnosed was the FODMAP diet. https://www.dietvsdisease.org/diy-low-fodmap-diet/#A_low_FODMAP_diet_is_very_restrictive_and_designed_to_be_temporary That was very helpful to me.
3) You can have MP without having cancer. Cancer was a concern of mine, as well, because of family history. I do not have cancer.
4) The weight loss will stop when you’re able to eat again. Small meals/snacks several times a day work best. You don’t want to overeat, you’ll just feel bloated and sick. Try not to eat until you feel full.
5) I took Prednisone for about 3 months. It helped a lot. The only side effect I had was some hair loss. But my hair grew back when I stopped taking it. I’m sure there are other drugs you can take.
6) Besides the Prednisone, I was just really careful what I ate and how much I ate. I had a lot of poached eggs. No fried foods at all. That, I have to say, is and was the hardest change to make. I love fried chicken and french fries.
Please talked to your doctor about your gall bladder. After being diagnosed with MP, I went through all the treatment and a year later I didn’t feel well again. It turned out to be gall bladder polyps. Had someone shared that with me, I would have checked my gall bladder sooner. I had my gall bladder out Sept. 27th. I’ve been feeling much better.
I hope some of this is helpful. I know having a rare disease is scary. But if there was ever a time to have MP, now is the time. There is so much new research out there. The mesentary has just been discovered as being an organ all its own, instead of a “bridge” between other organs. So there’s lots to read about about. Google, Google, Google. Arm yourself with questions for your doctor. Don’t let them tell you it’s nothing. Just keep researching and asking questions.
Take Care,
Bertbiz

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Hello @bertbiz

What great advice. It is important for us to all persist and get our questions answered! Thanks also for information about the diet you followed. I think that all of us with digestive tract disorders feel better with small meals and light foods. Both light in quantity and light in quality.

Teresa

REPLY
@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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Just wondering if people are being checked for bone density after they have been on steroids for a while. My GP advises a bone density scan and said I may have to go on a Calcium tablet once a month if my levels are low

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Hi Fernando,
I hope you find this group as helpful, supportive and uplifting as I have!

In April 2014, I was diagnosed with MP two weeks after a bad fall on my back (on black ice). It would seem a common a thread to this disease is severe back trauma or abdominal surgeries and I have had both. I am not sure about answering your questions, but I can add a Canadian medical perspective. After going on an aggressive 6 month treatment plan on Prednisone, the MP went into remission until mid August of this year. At that point, like you, I had a lot going on (my son got married July 29th, house renovations, my in-laws coming from overseas to stay with us and my father was diagnosed with an aggressive form of cancer and passed away on September 19th). I did a 5 week treatment of Prednisone in mid August and was beginning to feel better, but by the end of October, the symptoms came on much more severely. At this point, I am completing another 5 week Prednisone plan, but my pain is being managed with a slow release codeine-contin medication. My gastroenterologist did not know enough about the disease during our last visit and wanted to do some research. I go back to see him on Tuesday (after waiting a month for another appointment) and I do know that he was considering putting me on immune suppressant medication alongside the Prednisone. I will update this forum with any developments or any different medication that he may put me on. I have also been reading about thalidomide as another option.

As for cancer, I was tested three years ago for markers for lymphoma and never heard back from the cancer clinic (in Canada, no news means good news lol). I am not sure how long that test would be valid for, but I think if you have a concern, this test was easy enough to have done.

As for diet, I had been following my own plan, which is high protein, low carbs, real food (I seldom eat out or anything out of a box). My grocery shopping mainly occurs in the outside aisles of the supermarket. Personally in my case, I strongly believe that my relapse occurred from the stress and upset I felt throughout my father’s short, but severe illness. I have not been back to work this year (I am an elementary school teacher), but am hoping to begin back, at least part time hours, in the new year.

I hope this post has helped.
Kim

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@kimh Thank you for sharing your experiences, I’m glad that Mayo Connect has been a good place for you to get support. I see that @vdouglas has been helpful to you as well!

Teresa

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@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

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@jolied , I don’t think I have seen that mentioned. Excellent advice!

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Yes, he has! It’s nice to have conversations with people who ‘get it’! I also find that sharing any advances in therapies very helpful.

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@judy147

Looking back I remember in the lat 15 years having episodes where my stomach felt sore with no other symptoms. I use to say it felt like someone socked me in the gut or like I had been doing hundreds of sit ups or crunches. I wonder if this was the MP. Has anyone else had this. For the past week I have been getting this feeling a lot. Having an MRI enterography on Nov 6. When I went to see my GI doctor I hadn’t really been experiencing too much. But for the past week my stomach has been hurting and I have been slightly nauseated. I can not take steroids and anti inflammatory medications bother my stomach, not sure what other treatments there are for this. Wondering if something I am eating is causing it. Please any input or suggestions appreciated. Suppose to go back to the doctor Dec 5, but I may have to be calling him sooner the way I have been feeling.

Jump to this post

I go for an annual bone density test and since my first round of Prednisone, it has been discovered that I have osteopenia. I believe that is the reason that the doctors have been less aggressive with the prednisone therapy.

REPLY
@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

when they came back from the CAT scan all the doctor told me I had a very rare disease call mesenteric panniculitis and that she will refer me to a gastrologist I am at work right now but as I’m Walking the Floor I’m getting like cold sweats so I don’t know what’s going on with this disease. Did the pregnazon give you any of those side effects.

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Thank you very much only got one more question do I ask my doctor if I could get some time off I’m at work right now and I could only walk for about 15 minutes and I got to come back to my office and sit out for a while itsec numbness in my feet and cold flashes I don’t know if the steroids are causing all that.

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

Jump to this post

Hi Fernando,
My side effects were (and still are because I am back on Prednisone): weight gain, facial hair growth (I’m a girl!!), the hair on my head was becoming brittle and falling out and I ended up with osteopenia. I may have had mood swings, but I’m still sure it was everyone else around me lol! To be honest, there are many potential side effects, but I needed the pain and the nausea to be alleviated.

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@fernandoparce

Hello, I have a couple of questions about Mesenteric Panniculitis. I was recently diagnosed with this disease after I was injured in my stomach at work. After about 2 weeks of pain I went in to get a ct scan and this showed up. They have done blood work, exrays and a catscan and it showed no tumors, cyst’s or cancer. I just want to get a better understanding of this disease. I read that it is very rare and there aren’t to many studies on it. So for the people who do have it, it would be very helpful to hear from you all.
1. Can I die from this disease?
2. Is there a special diet I have to follow?
3. Can I have this disease without having cancer?
4. When will the weight loss stop? Will I continue to loose weight until I’m all bones? (I’ve already lost 15 pounds, My brother just passed away from Pancreatic Cancer 3 weeks ago and seeing him suffer like that I’m sure affected my health and weight as well but I just don’t want to end looking frail)
5. Besides Prendisone does anyone know of anything else I can take that would help?
6. Has anyone tried an all natural way of treating it (chemical free) if so what did they use and how effective was it?
Thank You,
Fernando Arce
I look forward to hearing from you.

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Sick leave is a discussion that my doctor brought up with me, because I was unable to fulfil most of my work duties due to pain. In my case, exhaustion and nausea were also issues. My job is one that I need to give my ‘all’ and would be very unfair to my students and colleagues if I were to just ‘dial it in’.

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Hello everyone my name is Fernando I just started presents on a week and a half ago can somebody tell me what is it for the doctor told me to drink 40 mg but I’m taking 20 because 20 makes me nauseated and doesn’t make me feel too good now if I’m taking 20 in a week then take 15 then another week 5 and then stop I’m not too sure how to take them can anybody guide me to this.thank you

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