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

Sorry to hear of your troubles at Mayo Clinic Rochester, I am a patient there and have not encountered one rude, unfriendly person. I have gotten appointments faster than expected most of the time, but given a reason if I couldn't. I guess things are different for different people. Mayo's motto is "The needs of the patients are above ALL other thinks" per Charles and William Mayo, I believe it to be a living motto.

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@cconnors

I called to make an appointment today at the Mayo in Minnesota, I called a few weeks ago, and was told to try back today because I wanted an appointment in late June. When I called previously the person that answered the phone was very abrupt and told me that Dr. Pardi does not see patients for this… he just wrote a paper on it. When I asked who specializes in this, they said I would have to see one of the general GI docs. When I called this afternoon they had the same attitude, like I was disrupting their day. Not friendly at all. I was told that there is only a Glen Alexander, no Jason Alexander and that he doesn't see patients for MP. I again asked about Dr. Pardi and was told that he rarely sees patients but might be available for the dates that I was looking for. They want me to call next week when the appointment calendar becomes available. Has anyone else experienced this issue when trying to make an appointment? Should they advise if there is a doctor who specializes in this? Are the doctors as cold as the person answering the phone?

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It's been a hard time finding someone who actually knows what MP is, where do u go and what's the outlook. I'm in the same boat. To find compassion and a kind voice helps tremendously. So how do u go from point A to C? It's that (B) that's the killer, hate using that word, but when it fits. We, as your not alone in this fight to get help. We call looking for help, and we end up talking to a bridge troll. They won't lower the bridge for you to cross for that help. The talk to u as if your asking them to pay your IRS taxes. They make it sound as if where the ones with the knowledge already in hand. Then, to round it off it is our duty to address them as queen or king, that their time is governed by what they dictate. Yet, for what ever purpose there titles are receptionists or customer service providers? Go figure, our health is second to their primary needs to be pampered and never questioned, only to be told when to speak and when to be spoken to. To actually find someone with the ability and knowledge to help you is beneath their need to sit, answer, and smile and gossip for a paycheck. Never mind your needs to not suffer from a debilitating, rarely recognized disease and find that pervebal needle in the medical soup. We pay more, we get less for a government controlled Healthcare system designed to promote jobs within the system. As we feed this system, we are actually not in the system. So I can only offer one true comment that has a rarity of working, that good luck is really all we have left. 

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Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

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@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

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I have had good luck with Meloxican. My doctor is a GI doc currently treating 4 patients with this therapy. It doesn't have the side effects of the prednisone and is much safer. I normally take it every two or three days unless I am having a flare, then I take it daily until things settle down. Between that and a strict diet it minimizes my discomfort and help keep the inflammation at bay.

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Hi @kimh,

Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report, and Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year. Here's more information about Mayo Clinic's approach:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

If you do decide to make an appointment at Mayo Clinic, you could do so by calling any one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I hope this helps.

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@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

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Have you heard of any other types of medications that are not in the family of NSAIDS or Steroids. I have a severe issue taking these types of drugs as I loose the ability to see. This is a rare but devastating side effect to NSAIDS and Steroids. I'm a unfortunate few who have this problem. Thank you for your time

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@kanaazpereira

Hi @kimh,

Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report, and Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year. Here's more information about Mayo Clinic's approach:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

If you do decide to make an appointment at Mayo Clinic, you could do so by calling any one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I hope this helps.

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I will keep it in mind, only that distance and cost are a non starter. I do read these post and I'm starting to see a commonality with many of MP patients. One is that MP, a rarity among auto immune disorders is also a precursor that some have noted either Lymphoma and or tumor growth that is happening after some years with MP. I'm also seeing here is that there are only a few MD's who are truly looking for and to help patients with this disease. Medications, as the condition (Auto Immune Disease) which signs and symptoms resulting in inflammation which is a response to something the body is working to repair and fix. Our disease (MP) is piggy backing off treatment for RA and other severe inflammations of the body and the medication that is prescribed to MP patients appear to have a primary link to RA etc. So, without asking for treatment over the internet, do you know of any other medications that are built to treat MP specifically or is MP just grouped into the (other type) of AI diseases. In the Northeast, it seems we treat a good share of oncology type diseases but do not focus of AI (auto immune) type diseases like the Mayo. However, after going through oncology from what of my more severe MP outbreaks, they were in the dark when it came to MP, and the fact that MP has a higher secondary affliction rate of lymphoma and tumor. But asking oncology what should my screening be because of my MP. One highly own MD with a high success rate of treating and curing lymphoma looked at me with a puzzled look saying there isn't any relation of MP and a higher rate of lymphoma or tumor cases. However, the NIH and other well known publications have even documented a higher rate of lymphoma of tumor cases. They just can't get the % down yet to anywhere from 28% to 42% higher chances.

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I was diagnosed last July in a CT with MP and finally was able to find a doctor that was knowledgeable in it. He ordered a MRI enterography with contrast which did not show any MP. He said it I did have it I don’t any more. The last couple of days I feel like I have something in my epigastric area. It is also a little sore when I press on it. I don’t have heart burn. I was wondering if this could be MP coming back? The last time I had pain in my flank area. Any thoughts would be appreciated. Thank you.

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@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

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Thanks! That's one medication that I hadn't heard about!

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@kanaazpereira

Hi @kimh,

Mayo Clinic in Rochester, Minnesota, ranks No. 1 as the best gastroenterology and gastrointestinal (GI) surgery hospital in the U.S. News & World Report, and Mayo Clinic doctors care for more than 200 people with sclerosing mesenteritis each year. Here's more information about Mayo Clinic's approach:
https://www.mayoclinic.org/diseases-conditions/sclerosing-mesenteritis/care-at-mayo-clinic/mac-20355090

If you do decide to make an appointment at Mayo Clinic, you could do so by calling any one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments

I hope this helps.

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Thanks Kanaaz,
I hesitate only because I am concerned that there has not been a lot of research done and I would hate to get another opinion only to be taking the same medication that I am already on. I will read about the Mayo Clinic's approach though. I'm beginning to get frustrated with this bout (since August!).

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@kimh

Hi, I am writing from Canada. I have a question, if you don't mind sharing. I have been out of remission from MP since August 2017 and on a daily dosage of Prednisone. I was beginning to feel some improvement in February, but relapsed by the end of February where my GI increased my dosage of Prednisone to 20 mg. daily. I was wondering if the Mayo Clinic offers any other treatment for MP besides Prednisone? I am concerned that my body is not responding to the typical steroid treatment and if the Mayo Clinic 'thinks outside the box' for treatment options.

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I have only ever been on Prednisone. Unfortunately, it has not been very effective this bout…

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@judy147

I was diagnosed last July in a CT with MP and finally was able to find a doctor that was knowledgeable in it. He ordered a MRI enterography with contrast which did not show any MP. He said it I did have it I don’t any more. The last couple of days I feel like I have something in my epigastric area. It is also a little sore when I press on it. I don’t have heart burn. I was wondering if this could be MP coming back? The last time I had pain in my flank area. Any thoughts would be appreciated. Thank you.

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Dear Judy,
I have just been diagnosed with MP and I am looking for a specialist in NYC. Who is your specialist? Any recommendations?

Thank you so much in advance!

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