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Prednisone tapering
I started Prednisone on 2/6/26 after being diagnosed with PMR. My starting dose was 12.5mg which gave me great relief but not totally. My PCP wants me to decrease by 1 mg per month. My concern is that I am noticing the joints in my hands are still swollen and stiff. This is an improvement from where I started but not my normal. My knees are in pain and weakness in my legs is constant. I am also retaining fluid by noticing my weight going up and feeling puffy. I am to get some bloodwork done on 4/9.
My question is did you get completely pain free with Prednisone?
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@betsyhase, It seems like you are fairly early in your diagnosis and treatment of PMR. For both of my occurrences of PMR I my starting dose was 20 mg prednisone and usually within an hour or so of taking my dose, I was relatively pain free (less than 1 on my personal pain scale of 0 to 10) and quite a bit of the time was at 0 pain. Everyone is different and tapering can be a challenge. Some doctors do want to get you off of prednisone as soon as possible but I don't think there is a set rule for everyone. My rheumatologist had me keep a daily journal of my level of pain when I woke up in the morning and the dosage for that day. The main reason was if my pain level when I woke up was more than what I considered acceptable (less than 2) then he told me I should delay my taper for a few days when it was time to taper or possibly increase the dosage half of my previous taper down so that I was still making progress with my tapering schedule.
You might find this discussion by @dadcue helpful.
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
It sounds like the treatment is not controlling your pain very well. There may be other treatments that might also help. Have you discussed it with your doctor or rheumatologist?
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2 Reactions@johnbishop
Thanks for your detailed reply. I guess in the beginning I was so glad for any relief and at the same time, fearful of taking Prednisone. I guess I will have to wait until after my next blood test before I can get my PCP to listen. At this time I am on a wait list for a Rhumatologist. There are very few in our area.
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1 Reaction@betsyhase if you have enough prednisone, you may want to delay your taper.
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1 ReactionI have had PMR for about a year. I started
Prednisone at 10 m which in two days took all the pain away. After nine months I began the journey to lower my dose. Over several weeks I was down to 5m. I stayed on this for several months and in late February began lowering again. I was fine on 4m but after two days on 3m I woke up in original pain and as soon as I took 4m the next day I was pain free. My doctor last week said after a few weeks I can start 3 m one day and 4m the next and alternate like this to see how that works. I have found that is a trial and error process.
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3 Reactions@nrrchachi
My PCP is stuck on decreasing 1mg per month. A site he researched gave that coarse of treatment. I am sure I need to increase dose but since I have bloodwork ordered for this Thursday, I will wait to see what the results are before messing with the dosage.
Thanks for your feedback.
@nrrchachi the alternating worked well for me…..it