Tapering - how long on 10mg?: I'm sure this has... - PMRGCAuk

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Tapering - how long on 10mg?

Booboos171 profile image
7 Replies

I'm sure this has been covered before so apologies if so but i am after some more advice please! I have been on pred since the beginning of June 2019, starting dose of 15mg and i am now down to 10mg. As with most GPs, mine is keen for me to come off pred as quickly as possible but does listen to my thoughts and is mostly agreeable; however, she does not like the idea of staying on 10mg for a year and as a 'compromise ' i suggested 6 months then start to taper 0.5mg per month using the DSNS method. If I'm honest i think she misunderstood me and thought i meant 1mg per month so was happy. My questions are, is 6 months on 10mg enough and should it be a 1mg taper or am i right in thinking 0.5mg? Or is it just a case of suck it and see?

Many thanks as always for your time.

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Booboos171
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7 Replies
SnazzyD profile image
SnazzyD

Hello, to kick off I’ll ask how does your body feel?

Mary63 profile image
Mary63

It was one group of doctors (Bristol I think) who suggest a year on 10mg. But a lot of us start doing 0.5 mg drops from 10mg using DSNS , but only only when we feel well.

Maybe here is where you can compromise with your GP. Maybe don’t stop for any length of time on 10mg but drop 0.5 mg a month ..ish...rather than 1mg, which you think she thought you meant (clumsy wording from me but I hope you understand!)

Very best of luck

Booboos171 profile image
Booboos171 in reply to Mary63

Thanks Mary, i understand! Yes perhaps it's the way to go. I've been on 10mg since the beginning of September so in a couple of weeks will be 5 months anyway.

PMRpro profile image
PMRproAmbassador

As Mary says, the year on 10mg pred is part of the taper the Bristol group under Prof Kirwan developed that reduced the rate of relapse from 3 in 5 seen on most of the usually suggested approaches in the literature to 1 in 5 for theirs:

rcpe.ac.uk/sites/default/fi...

is the full text that you can show your GP.

In fact, reducing too quickly often results in flares and returns to higher doses - quickly removing any perceived benefit of that faster reduction and often resulting in increasing difficulty in reducing the dose again. Very slow reduction or stable dosing at a moderate dose seems to avoid that - and I think the stable period of 10mg takes most patients over the period in the first 15-18 months when flares in disease activity are most likely.

Using the DSNS approach also seems to reduce the flares - I think mostly because patients are in more control and able to identify the onset of symptoms resulting from the dose now being too low and so they stop reducing and wait for things to improve. The faster/larger reduction steps mean it is all too easy to overshoot the dose you need, which is different for everyone. No one size fits all - and the Recommendations all use the word individualisation or the equivalent but few doctors register what it means.

Over the years I have found that it is OK to continue with the DSNS approach smoothly AS LONG AS you also listen closely to your body and don't deny that you are on the verge of a flare.

But - you imply it took you 18 months to get to 10mg? If so, that is a very slow reduction thus far - you are obviously not a typical Quick patient in terms of repspone?

Booboos171 profile image
Booboos171 in reply to PMRpro

Oh I'm sorry, that was a typo! It was 2019 not 2018! I've been on pred almost 8 months now.

PMRpro profile image
PMRproAmbassador in reply to Booboos171

I thought that was what you meant!! (I've edited your post to correct it so others get the right info)

If it were me I'd start the DSNS approach now with 1/2mg steps and see how you fare.

Booboos171 profile image
Booboos171 in reply to PMRpro

Thank you PMRpro, i will start on 9.5mg tomorrow!

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