I am so sorry so many are in such pain with this illness. I count myself lucky. My pain began around 2009. Around five doctors (specialists in gastro, surgeons, primary, etc.) had consulted with over the years. Various ultrasounds and CR scans resulted in diagnosis of messenteric panniculitis. All of the doctors indicated MP to not be of any concern. Only in 2016 when I read my own report from a CT taken at a hospital ER when I drove myself there in great pain did I find out I needed a biopsy for enlarged lymph node in the mesentery. I sought out a doctor at a major hospital who considered himself knowledgeable in MP who did endoscopy on a lymph node which proved negative. I continued in pain. It was through a blog, and prayer, that I learned of Dr. Pardi and Dr. Alexander at Mayo Clinic in Rochester, MN. I consulted with Dr. Alexander who called in a specialty surgeon after an exploratory was my choice of three options. Dr. Kellogg and his team were at my bedside when I awoke from surgery. I was told they had removed three feet of small bowel, 12 tumors and 13 lymph nodes (six of which tested positive) for Stage IIIB Carcinoid Cancer. Dr. Alexander said although they usually would look for lymphoma in cases like mine, they are often surprised at a different outcome and so they were surprised. I was given names of oncologists to whom they would refer me for follow-up and I chose to go to Dana Farber Cancer Institute where I have blood work every six months and scans once a year. I have had CT and Octreotide shot and scan so far and so far no new cancer. So far no need for medication. I will be followed for a total of ten years. Although my other organs were scanned for metastasis and proved negative, my fatty liver scans are too obscure, so I am seeking the Gallium-68 scan next. Previously used elsewhere in the world for neuroendocrine tumors it is now available in the US. A blog, prayer, and the doctors at Mayo in MN saved my life. Had I not been my own health advocate and refused to accept other (local) surgeons claims that it was impossible to remove the lymph node in the very difficult location in the mesentery (Dr. Kellogg was able to remove that and more), only God knows what stage I would be at now. So I thank those Mayo doctors and my Lord God, and a blog. Dr. Alexander said messenteric panniculitis can be a symptom of an underlying illness, which was the status in my case. So, please, don’t give up. And know that my case was atypical. Colonoscopies do not usually find Carcinoid Cancer, I had stuck to a routine colonoscopy schedule. Most Carcinoid of the small bowel is found during an autopsy as most cases don’t present with pain until the cancer is far along as mine was. Do not quit seeking answers!

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Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

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I was wondering if anyone has become Prednisone dependent? For the third time (of this bout!), I have tried to taper off the Prednisone. At 10 mg. I begin feeling much better, but soon enough the symptoms return. My GI wants to up my dosage once again to 20 mg. for a couple of weeks, 15 mg. for another month and then back down to 10 mg. again. I am so disheartened because in a week, I was supposed to be tapering down to 5 mg. daily. I have been on Prednisone since August of last year and am wondering if I have become dependent on it? I have read a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326978/) and wondered if anyone has used colchicine to aid in the tapering off of Prednisone?

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I was wondering if anyone has become Prednisone dependent? For the third time (of this bout!), I have tried to taper off the Prednisone. At 10 mg. I begin feeling much better, but soon enough the symptoms return. My GI wants to up my dosage once again to 20 mg. for a couple of weeks, 15 mg. for another month and then back down to 10 mg. again. I am so disheartened because in a week, I was supposed to be tapering down to 5 mg. daily. I have been on Prednisone since August of last year and am wondering if I have become dependent on it? I have read a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326978/) and wondered if anyone has used colchicine to aid in the tapering off of Prednisone?

Jump to this post

I was wondering if anyone has become Prednisone dependent? For the third time (of this bout!), I have tried to taper off the Prednisone. At 10 mg. I begin feeling much better, but soon enough the symptoms return. My GI wants to up my dosage once again to 20 mg. for a couple of weeks, 15 mg. for another month and then back down to 10 mg. again. I am so disheartened because in a week, I was supposed to be tapering down to 5 mg. daily. I have been on Prednisone since August of last year and am wondering if I have become dependent on it? I have read a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326978/) and wondered if anyone has used colchicine to aid in the tapering off of Prednisone?

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Hi @skywave,

I moved your post about finding informed practitioners for MP, and combined it with this existing discussion. I did this as I thought the other members in this group would also appreciate your insights.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the conversations by members discussing similar questions and concerns.

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I was wondering if anyone has become Prednisone dependent? For the third time (of this bout!), I have tried to taper off the Prednisone. At 10 mg. I begin feeling much better, but soon enough the symptoms return. My GI wants to up my dosage once again to 20 mg. for a couple of weeks, 15 mg. for another month and then back down to 10 mg. again. I am so disheartened because in a week, I was supposed to be tapering down to 5 mg. daily. I have been on Prednisone since August of last year and am wondering if I have become dependent on it? I have read a study (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3326978/) and wondered if anyone has used colchicine to aid in the tapering off of Prednisone?

Jump to this post

Hello all! Just diagnosed with SM on 2/26. Going to see my GP on 3/1. Can remember almost the exact day I acquired it. Came down with a myriad of symptoms. Drs. patted me on my head and told me to go home. 3yrs. later here I am. 36yr. old male Duluth, MN

Jump to this post

Hi @skywave,

I moved your post about finding informed practitioners for MP, and combined it with this existing discussion. I did this as I thought the other members in this group would also appreciate your insights.
If you are replying by email, I suggest clicking on VIEW & REPLY so that you can read through some of the conversations by members discussing similar questions and concerns.

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There is no underlying cause with my MP either, at least I hope not since they are more reluctant to follow any guidelines at my medical facility. Please excuse my non reply's to others if you did send me information regarding MP or wanted discussion. I was being bombarded with all auto immune disorders and it became a bad distraction when your phone and watch would light up a dozen times a day with non MP issues. All I can say is that I have a pretty good footing about what MP is. It is the problem with NE medical facilities that lack the caring for refined diagnosis and treatment. I can say without a doubt from Brighams Womans and Dana Farber that laxatives isn't the prime treatment for relief as this was what my so called specialist best guess solution.

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