THE TAPERING QUEST: Diagnosed with PMR in May, 15mg... - PMRGCAuk

PMRGCAuk
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THE TAPERING QUEST

Pmrmolly2018
Pmrmolly2018

Diagnosed with PMR in May, 15mg then up to 20mg pred which worked and made life comfortable. Fairly easy ride to 13.5mg BUT been trying to reduce by half mg for 3 months and cannot get below 12.5mg without pain, especially in thigh muscles and chronic fatigue. Unbelievable the difference half mg makes. What should I do? My doctor has left me to manage my own regime (the surgery is under huge pressure as have had to take nearly 7000 new patients due to nearby surgery closure). I have tried the Dead Slow method but still come up against the 12.5 mg barrier.

3 Replies
oldestnewest

Hello, does it feel like your original PMR pain? I ask because with every reduction, even 0.5mg, I have had pain, particularly in the thighs and shoulders, also headache and general body pain amongst other things. It lasted a few days at higher doses but more like a week at lower doses below 10mg. It used to scare me but now I’m used to it and wait. I only have GCA by the way.

Yes it is like original pain but just legs and difficult to get upstairs.. But even after a week still there with fatigue

..so back up half mg and ok again.

PMRpro
PMRproAmbassador

It doesn't matter how slowly you go - you won't get lower than the dose you need to manage the symptoms. Doesn't mean you won't ever, just not yet. It took me 4 years to reliably get under 10mg. Some people only absorb half the pred they take, others 90%. Obviously if you are a half person then you will apparently need a higher dose. If your GP is happy enough, just be patient and keep trying every so often. One day it will work.

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