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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)Comment receiving replies
I recently stopped getting updates so just have signed up again. Question now is I've been on prednisone starting at 20 mg for about a year and a half. I'm down to 3 mg holding there. Pain is really bad in the morning, 8 out of 10 but gets better after I take my prednisone. Anyone else experiencing this? I know the normal answer is to go up but I want to get off prednisone so bad. My bones are awful.. I'm 76 years old and very active still. During the day I can still walk and be very active. I just know I can't go down in the dose right now. Any ideas?
Replies to "I recently stopped getting updates so just have signed up again. Question now is I've been..."
Hi, I'm just about where you are except a couple of months ago, I tapered down from 3 mg to 2 mg and had a flare up. Went back to 3 and then to 4. I then tapered down by 1/2 mg every 3 weeks and just reduced a week ago to 2 mg with good results. I find that taking two Tylenol with my Prednisone in the morning helps a lot. I plan to stay with 2 mg for at least a month and then try 1 1/2 mg. No one wants to stay on Prednisone long term, but where would we be without it? My advice is to try 1/2 mg at a time.
This early morning partial prednisone dose also worked for me.
I take ⅓ of my daily dose around 2 am. Apparently the immune system is most active in the early morning hours and this 2 am dose diminishes it. No more pain in the morning!
I'm so happy to have learned about this on this forum. Hats off to @pkalkstein.
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At age 79 my morning pain almost disappeared when I began taking part of my dose at 2 AM (or whenever I wake up between 1:30-3). The explanation for this is found elsewhere in this forum. Good luck!