Tapering schedules- what to do when you flare up/react?

[Sydney0503]

Hi everyone, I'm a new member and was diagnosed at 52 last Oct (2020). I got from 15 to 12.5 mg ok, then tried 11 for 1 week then 10 , body not happy (mildly) so back to 11 and then did a taper of 1 day old, 1 new, 1 old 2 new etc to get to 10-stayed at 10 for a week and started to try the same to get to 9. Got to day 3 of doing 4 days on 9 and have finally accepted it is a flare/tapering reaction and not pulled muscle!

I now realise I am not doing DSNS correctly but thought as the 11 to 10 was OK, I might be OK again . So any advice where to go from here? I thought back to 10 for say 3/4 days and assuming that's ok, start a proper DSNS from there? Thanks for any advice.

[DorsetLady PMRGCAuk volunteer]

If it were me, I’d go back to 12.5mg - get stabilised again, maybe staying 2-3 weeks. Your body has been up and down a bit recently and needs to get back on track.

The DSNS - or any other reduction plan - will only work if your illness let’s it! If you need 12.5mg at the moment, you need 12.5mg - you will get lower, but not just yet.

When you start again, you could always try only 0,5mg a time......

better to take very small steps than try larger ones and end up with issues.

4 months in is very early days...you need to be a bit more patient. Not easy I know, but really it’s the only way.

[PMRpro Ambassador]

You are trying to go far too fast - you are better aiming for 1mg per MONTH, not per week.

The whole DSNS cycle should last about a month depending on where you start and while I know some people find the description difficult I am totally flumoxed trying to work out what you were trying to do.

[jinasc in reply to PMRpro]

Me too.

[Sydney0503 in reply to PMRpro]

Hi thanks for your response, I was trying to gradually step down to the lower dose but realise I was missing out the first part of the taper so I was going straight to 1 old, 1 new, 1 old, 2 new, 1 old 3 new etc . I appreciate it's too fast but I am new to this and figure that some gradual taper rather than x weeks at 10, x weeks at 9 which I think won't be great for me . All advice welcome 😀

[PMRpro Ambassador in reply to Sydney0503]

Ah so!! Hadn't though of that. Though plenty of doctors would tell you to do 1 day old, one day new for a week and then go to the new dose. Or even just from every day old to every day new with no smaller step.