I was diagnosed with PMR 7 weeks ago, my rheumatologist put me on Prednisone and I had an immediate response to all the pain I was having in my arms, neck shoulders and hips. He recommended tapering to 15 mg but I just can do it I have muscle pain , feel so tired , dizzy ect….
Went back to 20 mg this morning and plan on tapering down at a slower pace.
What is your experience with tapering down of this drug, I read, 1 mg a month. For me the withdrawal symptoms are just as bad as the PMR symptoms. Need your help and advice.
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Rose8950
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How were you on 20mg before you tried to reduce? And because you felt well, did you try and return to normal activities?
A drop from 20mg to 15mg in one go is too much.. is that what you did.. sounds like it. Is that because you only have 5mg tablets?
Get stable on 20mg, and then reduce more slowly 1mg at a time [if you can get 1mg tablets]. If not then you might be able to cut what tablets you have to get as close to 1mg as possible.
Have a look at this intro post [bit long, but please keep for reference] - and also one about tapering in general which expands on info in first post.
Yes, I was feeling great at 20 mg, my rheumatologist wanted me to drop from 20 to 15. Tried 3 times but I can’t do it unless I stay home and feel terrible. My question, is the pain related to the withdrawal from Prednisone or is it pain related to my PMR . I have 20 mg and 5 mg pills that I can split. I will phone my doctor tomorrow and ask him for 1mg tablet so I can taper1 mg at a time .
Loathe to say it, but many Canadian Rheumies don’t seem to have a very good handle on PMR/GCA if comments in this forum are anything to go by… but we’ll see you through 😊
Thank you so much for your reply. Another thing I have these hot flashes all the time, I didn’t even have any during menopause. Is this a common thing with prednisone. I read the 5 week plan for tapering down, 10% of 20 mg seems fair enough. I will give it a try starting tomorrow, hope all goes well to welcome the New Year.
Hot flashes are very common, can be the meds or the illness.. especially if it’s not fully under control. Seems to part and parcel,of many autoimmune disorders.
If you raise a new post on subject you will get oodles of answers…
It is wonderful to hear that you felt great at 20-- I completely agree with DorsetLady--- 5mg reduction would have been too much for me -- and it sounds like your body is telling you so--- there are 2 1/2 and 1mg pred tablets but getting stable first was what worked the best for me (no symptoms and a fairly low levels (ESR -- between 10 and 20) and CRP (between 1 and 2) -- I did do a few reductions of 2 1/2 ---but they were difficult---
I was able to get in the best tapering schedule when I reduced by 1 mg for about 5 weeks at a time--- I think I overdid it when I was feeling great--- so I am more careful with my activity level now--- I am learning to listen to my body and be patient and hopeful at the same time. All the best to you!
For information whilst reducing my prednisolone in the UK I have been supplied with 5, 4, 3, 2.5, 2, 1 and 0.5mg tablets. Most of the GPs in my practise were unaware these were available. So much easier. I’m down to 2.5mg at the moment.
No excuse for them not knowing - all available medication is listed on the BNF.NICE site - if I can look it, so can they… if you’re being prescribed 500mcg [0.5mg] tablets then you’re very lucky they are pretty pricey! £10 plus for 28 tabs compared to 80p for 1mg!
"I would hope your PMR is under control at 20mg but extreme difficulty at tapering would normally raise alarm bells for me. However - were you told to reduce the dose in one step to 15mg? That would be VERY likely to cause problems. The jump from 20 to 15 is going to cause the withdrawal discomfort - usually it will ease over a period of up to a couple of weeks but a smaller step would be far better
Five mgs, even with the 5 week plan, it too much at one time. It is best to aim for 10% of the current dose - 2mg when you are at 20 but 2.5mg for ease cutting the tablets is usually manageable. So go via 17.5 for a few weeks at least."
As we have explained, you MUST try to change the dose in VERY small steps. If you develop symptoms immediately you change the dose that is almost always what is called steroid withdrawal, your body protesting at the change in the amount of pred it got. Flares usually take longer to manifest. You have to get through that, often paracetamol will help with withdrawal discomfort, and then over a week or so the discomfort should improve. If it worsens it is probably a sign that the pred dose IS too low bit I fear very few people get away without some discomfort. You also need to take care of yourself - clear the decks for a few days when you try to taper and rest plenty.
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