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I think I have PMR and I’m terrified
Polymyalgia Rheumatica (PMR) | Last Active: 1 hour ago | Replies (85)Comment receiving replies
@martyn
yes, the symptoms fluctuate/vary in intensity every day before on prednisone and after starting prednisone but regardless things are worst in the morning. You will learn this quite quickly. It's all right to "disobey" somewhat the instructions from your doc. I started on 12.5 mg. My doc said yesterday it's not an exact science; the amount you start with and how you taper off the drug and you have to work together as a team, as well as experiment. As mentioned all the time on this forum, every PMR patient plots a different course and everyone is impatient and wants to get off prednisone as quickly as possible. But it's important to be patient. I tried 2 quick tapers already and learned a lot both times what I can handle and what I can't manage. Now I've got a third strategy set up with my doc yesterday. I just came back from a 40 mile 1400 m elevation gain cycling ride up Mt Seymour in Vancouver, my hometown. I haven't had any heart issues like @dadcue or max HR issues like @jeff97 in working out. I'm heading on a cycling trip to south of France in 3 weeks. I am definitely scared of the unknown territory being on prednisone and trying to taper down with 9 hour jetlag! Normally, I rest a day or 2 before going back at cycling but I'll have to do 7 days straight there. Hopefully, disaster won't strike! Let us know if 15 mg has helped resolve your pain/stiffness/discomfort
Replies to "@martyn yes, the symptoms fluctuate/vary in intensity every day before on prednisone and after starting prednisone..."
@dave923 Thanks Dave. Great to hear accounts of people still doing striong rides despite PMR and Pred....I'm only at the very beginning of this but ewill heed your example. One question....I feel that 20mg is quite a stroing initial does for me, although that being said i think to some extent that';s just to prove i have PMR as I said in my original post. My sypmtoms have vanished. I'm not delusional but i hope that maybe like you I can start at something lower like 12.5mg. I just feel that starting at that reduces the tapering time. Or is that just too simplistic. I guess the body will tell you?
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@dave923 good luck with the cycling trip Dave. Did you manage to keep cycling when first diagnosed with PMR? The max HR issues described by @jeff97 sound a little worrying to be honest.. I guess you only really find out these things further down the line ? Thanks again and I would like to hear about your trip..