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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jun 8 11:23pm | Replies (2096)Comment receiving replies
Hi all
I was diagnosed with PMR about a year ago. I couldn't even get dressed my joints were so sore. I started on 15mg prednisone and had immediate relief. After a few months, I had tapered off to 1mg. So, I thought this was going to be "a piece of cake". I was very active. I played tennis, golf, kayaked and worked out in the gym. After a five-day kayaking trip, I had severe pain in my upper chest and shoulders. It even hurt to cough or sneeze. I had headaches that seemed to come up from my shoulder muscles. I saw my rheumatologist and he ramped the prednisone up to 20 because he was concerned about GCA. I have slowly tapered off and am down to 7mg but I am not pain free. I have found that the physical activity that I did before aggravates the situation, so I have stopped. I have been taking acetaminophen twice a day to deal with the pain. I don't see any point in continuing to taper off if I have pain. I seem to be stuck.
Replies to "Hi all I was diagnosed with PMR about a year ago. I couldn't even get dressed..."
@dennisnie
I do the same - I take 2 Tylenol in the morning and 2 Alleve's in the afternoon. It helps a little bit, but not much. At work every time I get up from my desk I can barely walk - I feel like I'm 80 years old. And, I agree about the tapering off - I've researched but still don't really understand the dangers of not tapering off. I fell stuck also. But know you are not alone. I am so glad I found this group.
Connect
Welcome @dennisnie, Tapering down can be difficult and like a lot of us have discovered there is no single tapering plan that works for everyone. My PMR is in remission for the second time and it's been over six years but I do remember that overdoing any physical activity/exercise would cause some additional pain the following day. I think the activity is really important to do but sometimes it's a little hard to know how much is too much. You might find the related discussion helpful:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
Many members have also used alternative treatments to help reduce prednisone use. Here's a search of Connect showing the discussions and comments - https://connect.mayoclinic.org/search/.
Are you able to talk to your rheumatologist to see if it may be an option to help you taper off?