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maryft (@maryft)

PMR Dosages and Managing Symptoms

Polymyalgia Rheumatica (PMR) | Last Active: Sep 14 1:58pm | Replies (405)

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I personally think that tapering off is an individual problem. Some people take months to go from say 10 mgs. down to 9, while others start at a much higher dose and can taper off faster until they get to a lower dose. Your body lets you know when to hold steady. I started at 10 mgs. and am now down to 2 mgs, but it has taken 16 months with fluctuations along the way. My body is telling me to stay at two for the time being with just the occasional stiffness when getting up from a chair. After my rheumatologist started me on Plaquenil (200mgs twice a day) I was able to taper off every two weeks from 8mgs down to 2 mgs today. So far so good.

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Replies to "I personally think that tapering off is an individual problem. Some people take months to go..."

Dr. Gupta (a UK PMR expert) now leaves many patients at 2 mgs. for years. Evidently there are few side effects and some benefits in reducing flares and the need to yoyo prednisone.

My rheumatologist said the last 2mg were the hardest to wean. I had gotten there after 5 years of trial and flare ups, then came up with GCA and dose is now at 60mg. Vision almost back to normal. no pain at all. I realized how much pain I was actually tolerating, feeling that as long as I could dress myself and get around I could tolerate it. I now realize the toll that was taking on the quality of my life and relationships . I know I can't stay at this dose, but guess I need to be more realistic about how much pain to tolerate vs the impact on my quality life.

Yay Plaquenil, me too. I dropped to 200 yesterday and thought better of it at 1am, lol. I also had dropped 1 1/4 mg Prednisone, which I added back in today.
This is a full time job!