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DiscussionDoes anyone else feel isolated and misunderstood?
Polymyalgia Rheumatica (PMR) | Last Active: 4 hours ago | Replies (37)Comment receiving replies
Replies to "Sandy, first sorry this is so long. I went through a similar deal in July, August..."
@lagpmr2024 I suspected that dosage was weight-based, but your post has confirmed it. I was around 120 lbs when I saw the rheumatologist (now up to 125) and he put me on 10mg. I had not had total relief after 2 weeks so I asked him about upping the dose. He asked me to be patient and stay at 10mg. After another week or two I had total relief and then went on to feel younger and stronger every day, confirming his suggestion. Then, of course, I had to reduce and followed the dead slow taper. I had no problems tapering, but after a couple of months with no prednisone, I began to feel sore and stiff again, but not like PMR--like feeling really old. He recommended going on a maintenance dose of 2mg, but I did not want to risk further erosion of my bones, skin, and sleep. I have tried various OTC regimens and have found naproxen (Aleve) to have the best results. That has its own problems (histamine reaction to any alcohol, but I can live with that).
My point is, we are all different, including rheumatologists. Their training also sees to be all over the map, so forums like this, where actual suffers share their experiences, is vital. Thank you for sharing!
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@lagpmr2024
Very interesting about the weight dosing. I’ll figure that and see where I should be. Thank you, any info is helpful. This is such a crazy disorder 😵💫