Nearing the finishing line?: Hi All I started on... - PMRGCAuk

PMRGCAuk

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Nearing the finishing line?

9 Replies

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
PMRpro profile image
PMRproAmbassador

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.

in reply to PMRpro

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

PMRpro profile image
PMRproAmbassador in reply to

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!!!!!

Good advice - thanks again.

HeronNS profile image
HeronNS

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.

in reply to HeronNS

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?

HeronNS profile image
HeronNS in reply to

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!

in reply to HeronNS

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 “.

HeronNS profile image
HeronNS in reply to

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

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