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I think I have PMR and I’m terrified
Polymyalgia Rheumatica (PMR) | Last Active: 2 hours ago | Replies (25)Comment receiving replies
@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up with pain but i think that will just open a can of worms and be thoroughly miserable. I dont know if you had this but this morning (this is before i started taking any Pred) i felt about 50% better than the previous morning so in my silly head I start to imagine that maybe it's goign to magically disappear! did you notice pain levels vary before you started the medication journey? I'm down to take 20mg for the next 5 days and then have my follow-up with specialist. I will have to confess to him that I'm only taking 15mg! I'm now going out for a short ride. Bizarrely lasty week i was in Mallorca where my wife is from and I love riding there and even with barekly being able to use my arms I could still ride in the heat and it actually seemed to help as when i returned later I was looser. So I'm going to try and keep rolling as much as possible but maybe leave my return to Mont Ventoux until next year when hopefully I'll be on the right path to getting over this ! All the best
Replies to "@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up..."
@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
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@martyn Something I found from my time on prednisone was that it significantly lowered my maximum heart rate. I kept running through most of my time on prednisone, but I would have to walk most uphills, and also take frequent walk breaks to let my heart rate come down. It took almost 6 months of being off of prednisone before I could really make hard efforts again.