PMRGCAuk
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Nearing the finishing line?

Hi All

I started on 15mg of pred. in Dec ‘16 and have been reducing using the DSNS method. I stayed at 2mg for an extra 2 weeks over Christmas (extra travelling etc) and then went straight down to 1.5mg which I have been on for 3 weeks. Today I have started tapering to 1mg using DSNS method again and hopefully will get down to 1mg in 4 weeks.

My question really is how long do I stay at 1mg? I have been pretty lucky with no flares so far so should I just stop after 4 weeks or so or reduce again to .5mg?

I don’t want to mess up and rush things.

Your experiences would be gratefully received.

9 Replies
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You have done very well to get this far in such a short time - it does happen. But you can't tell that the PMR has gone away until you get off the pred. I would do a month at 1mg, a month at alternating 1 and 1/2, a month at 1/2 and so on. These are such tiny doses they won't hurt you with side effects - but you wouldn't be the first person to find 1mg was keeping the inflammation at bay.

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Thanks for advice, I will drop straight to 1mg every day for a month and then reduce further as you suggest.

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Just don't be in denial if you start to get symptoms again - stop reducing, go back to the last dose you were good at and wait a month or so. Then try again. If you don't you may have a flare and be set back by several mg. You don't want that!!!!!

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Good advice - thanks again.

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I thought I might be in remission at 1.5 last spring. Efforts to reduce to 1 taught me otherwise. Err on the side of extreme caution! Good Luck.

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Oh dear. Are you still on 1.5 or did you have to go higher? What symptoms did you have when trying to reduce to 1mg?

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Calvi, I'm currently at 3.5, tapering to 3. I experienced return of PMR symptoms. The morning I found it hard to get out of bed I knew my doctor's instructions to "finish your tablets, stop and see what happens" was wrong on all levels. I had attempted to taper to zero, using the dead slow method, as I had almost exactly enough tablets left to do that, but it was too soon for me to try to go lower. Stupidly I tried to go to 1 mg more than once. So then I tried 3, then 4, and eventually 7 for about six days, dropping fairly quickly back to 4, and have used dead slow taper again since then. This adventure started last June. I did get advice from a locum to go up to 5 for, I think she said, two weeks. I couldn't bring myself to do that, but I should have. Might have saved myself a lot of grief!

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It really is a minefield isn’t it? Each of us react differently to this illness. I shall listen to all this advice and take my time tapering and hopefully manage to get off the pred eventually.

Thanks for your input. I wish you luck with your “journey “.

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Remember the wise words of PMRpro: "It isn't slow if it works".

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