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← Return to Tapering off of Prednisone
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Polymyalgia Rheumatica (PMR) | Last Active: Feb 28 5:49am | Replies (313)
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Thank you, thank you, thank you. This is so helpful.
Just from a logical viewpoint, tapering while the pain is still bad does not make sense to me; the pain will only increase. If it is already strong, making it worse makes no sense.
To be honest, before prednisone, my pain was so bad that life would not have been worth living if it could not be treated. Prednisone made it bearable, but so far my life is seriously impaired. I was diagnosed on Feb 3, 2023, so its all new to me.
My rheumatologist has made statements about tapering that really bothered me, but I've learned now that I have to be VERY direct to make sure my concerns are heeded.
This forum, and comments like yours are extremely helpful.
Replies to "Thank you, thank you, thank you. This is so helpful. Just from a logical viewpoint, tapering..."
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I can totally understand where you are coming from. The first couple months are a whirlwind, trying to grasp what's happened and how to best deal with it. What dose is needed, what time of day/night to take it, food intake, possible sleep issues, sorting out types of pain, etc, is enough to make your head spin right off your shoulders at first!
I don't know about you, but there is a comfort in knowing the name of the beast that has attacked your body. It gives you a target but you absolutely must be your own advocate and not blindly accept everything you're told. Become informed through this site and other forums. I've had 4 rheumatologists over my 6+ years of PMR. One moved, one retired, I fired one and I'm currently on the 4th one. None of them approached treating my PMR in the same way. Don't get me wrong, many GP's and rheumys are excellent but there's also a large number that are operating on outdated info about PMR or have their own ideas about treating it because they're more used to treating rheumatoid arthritis and such things. I'm on the higher end of the treatment timeframe at 6+ years so far but I made my own decision to slow down my reduction radically after 3 massive flares in the first 2 years put me back to where I had started. I'm currently at 2.5 mg of pred and my current rheumy said as far as he was concerned I could take that for the rest of my life and have no issues with the pred because of the low dose. I agree. A comment from another forum that I heard years ago has really stuck with me. "It's not a relentless reduction of the prednisone dose to get down to zero. It's a gradual reduction, finding the lowest EFFECTIVE dose. It isn't a race."