My GCA/PMR was diagnosed 3 1/2 years ago. I’m at 1 3/4 mg of prednisone and I’ve been using your 7 week tapering plan for several months now. I have had a few afternoons and evening with some pain in my left temporal as it was in the beginning. I chalked it up to Christmas and over doing exercise. I was fine the next day.
Now I’ve met with a new rheumatologist two times. I told her I had pain in my left temporal but it went away. She thought that was very odd and said the pain should be in my jaw and have blurred vision.I told her it was the same pain as the beginning (but milder) and she said maybe it was from the biopsy.
I have not told her my tapering plan as my last doctor was so confused by it she had 2 different nurses and the pharmacist make sure I knew what I was doing. I got tired of explaining it (I did send them a copy). In the end I just continued with your plan.
Now my new doctor wants me to do 2 mgs one day and then 1mg the next day for a month.
I can’t find info on this system and would so appreciate any comments. Thank you so very much.
Written by
Grandmabeach
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The reduction sounds like some bright idea your rheumatologist thought up. Ask her where she got the idea from! Rather strange telling you where your pain should be.
My rheumatologist wanted me to do that when I was tapering from 5mg as she said cutting the tablets would not work. I'm afraid I ignored her and used the very slow taper down to 4.5mg. Currently at 2mg and about to start the taper to 1.5mg. At my next appointment I'll tell her my current dose but not how I got there.
And WHY won't cutting tablets work? At the worst, it might possibly be slightly less or more than half the full dose in the tablet - but that is what you are aiming for, less than the full dose, Exactly how much is immaterial really. If cutting tablets doesn't work - why don't they ban tablet cutters?
That was exactly my argument with her but she wasn't moving so that's why I ignored her. I also explained to her that I didn't cope well with a drop of 1mg and by experience had learnt that I had to taper more slowly. I do sometimes think that after having PMR for over 6 years and from what I've learnt from here I know more than she does but unlike the previous rheumatologist she's not rushing me to get off prednisolone so I'm not complaining.
We don't like it as a way of reducing except for a few days in the middle of a taper. It's big changes from one day to the next.
And like DL, not impressed by her GCA knowledge - there is no such thing as "pain SHOULD be ...", temporal pain is a perfectly reasonable expectation in GCA and many patients don't develop jaw pain. It all depends where the GCA is affecting. However - it is less likely if that is the side the biopsy was done, not much artery to affect.
I couldn't believe her not accepting the temporal pain. I've had it occasionally over the last 3 1/2 years. I did have jaw pain before I started on pred but never since then. I so appreciate your reply.
I didn’t find alternate days worked for me. I’ve been on 1 mg for some weeks and am going to try 3/4 mg next week. Cutting difficult ! Yes. The tablets are so tiny. On my second cutter now. Recommended. Better!
The alternate day system just seems like too much of a swing. It is tedious cutting the pills but I think I better stick with it. Thank you very much for sharing your journey!
I had thought that alternating might work but after some thinking I didn’t. I looked at it like fighting a fire. At first a lot of water and as the fire gets under control reduce the water. But cutting it in half could cause it to “flare up” and a lot more water would have to be used…. Sometimes Doctors over think things.
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