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...

Jump to this post