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Mesenteric Panniculitis or Sclerosing Mesenteritis

Digestive Health | Last Active: Dec 4 5:59am | Replies (1518)

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@kimh

Hello @kleniek
I have been finding that although most of us have 'similar' symptoms etc., there is still a 'try and see' approach when it comes to treatment. I have been battling a second relapse for over a year now, trying to get on the treatment that will help me back in to remission. Maybe this is due to lack of research? Anyway, when I was first diagnosed, (also surgical biopsy) I was put on a strong steroid regimen. I was in remission for over two years and 'forgot' that I ever had this disease. Then by August 2017, I relapsed. I was put back on a steroid regimen (Prednisone), but not as harsh of a dosage as the doctor was hopeful that we caught it 'early'. Unfortunately, I have been on Prednisone ever since. Each time I try to wean down, I seem to go through a relapse, which tells me that the steroids are still effective. My doctors (I'm from Canada btw) are keeping me on a low dose for the time being, but have also prescribed tamoxifen and azathioprine too. I am finding this (can we call it a cocktail??? lol) combination to be helpful for the pain, but am currently experiencing some side effects of the other meds. Livable, but I am still hopeful for the days of remission. I will just end by saying to make sure that you have a good GP and GI. I also have a rheumotologist on my team. I have been lucky in that my GP and GI have been working hand in hand to try to help me. I am their only patient with MP, but thankfully they are not too proud to reach out to colleagues for advice. I hope my little journey can help you...

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Replies to "Hello @kleniek I have been finding that although most of us have 'similar' symptoms etc., there..."

Thank you for your response. I’ve read a lot of the stories and understand that this is affecting everyone differently. It gives me hope that it can be managed with the right “team”. I’ve been in pain for about 3 years on and off and finally found a physician who was willing to go beyond looking at my diet and blaming IBS. Granted I do feel better when I am eating right, but I knew there was more to my pain. I wish you the best with treatment and am thankful I found this site for support! I would be happy to be involved in any future studies.