Tapering: Hi. I was replying to you Sandy, but... - PMRGCAuk

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Tapering

Suedeshayes profile image
10 Replies

Hi. I was replying to you Sandy, but somehow lost my writing. Not quite a computer buff, yet.

I started on 15 mg for 3 weeks, then 12.5 for another. Next week it has been suggested by doctor to go down to 20 for 4-6 weeks. Already I am thinking that 6 weeks would be better. After that, I think I need support from you all to suggest what next. I know we have been down this road before but just would like to hear what you all think. Thanks. Sue.

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Suedeshayes profile image
Suedeshayes
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10 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Think that’s too quick. Most people stay at starting dose for at least a month, many for 6 weeks to make sure built up inflammation is properly under control. Then stay on each dose for 4 weeks before tapering again.

If he’s suggesting only staying on a dose for one weeks then that doesn’t give you time to know whether you are okay at that dose before you taper again. A recipe for disaster methinks.

Tell him, you want to taper more slowly.

Sandy1947 profile image
Sandy1947

Go slower with tapering. No need to rush. I was decreasing 1 mg per week from 25. At 16 and staying on new dose for a minimum of 2 weeks. When I reach 10 I’ll try DL’s method.

Suedeshayes profile image
Suedeshayes in reply to Sandy1947

Was 1 a week ok?

Sandy1947 profile image
Sandy1947 in reply to Suedeshayes

One week was ok until I hit 16. Staying 2 weeks on future decreases. In no rush. When I hit 10 I’ll follow Dorset Lady’s plan.

PMRpro profile image
PMRproAmbassador

I assume you mean 10mg next? And you have been on 12.5mg for 3 weeks too? Are you OK at that?

Don't plan times at a new dose - wait and see if it works OK first!

Suedeshayes profile image
Suedeshayes in reply to PMRpro

Hi, I did wonder about the fast pace of reduction, and after reading all the different replies, I wonder if my doctor is slightly inexperienced in the tapering idea. 12.5 seems ok at the moment, but 10 is the next jump, but tempted to go to 11 next week. What do you think?

PMRpro profile image
PMRproAmbassador in reply to Suedeshayes

Not inexperienced - except probably hasn't seen enough patients with problems to realise that he only noticed half the guidelines: the bit about adjusting tapering to the individual patient seems to get glossed over.

You could try 10mg but be watchful and don'tt hang around if it doesn't seem to be working as too many people (including doctors) do. If it doesn't work, go straight back, wait a few days and then try a smaller drop. From 10mg though - 1mg at the most.

Brandon47 profile image
Brandon47

Think you are reducing them too quickly. I started on 20mg 18 months ago and now on 5mg about to drop to 4mg. Lots of sun and exercise.

Suedeshayes profile image
Suedeshayes

I live in Scotland!! ⛰🗻🥃🌨🌦⛄️

Exercise, I can do, but can't guarantee the sun!! 😂

Rugger profile image
Rugger

A rule of thumb is never reduce more than 10% of the previous dose and, as the others say, stay on each dose until you're sure the symptoms are at bay. When you get into single figures, 0.5mg drops are a good idea, along with slow tapering.

I say all this from experience, as I dropped by 1mg a month from 9 to 4mg and experienced a flare, which meant I had to go back to 10mg and start again. 14 weeks on, I'm tapering to 7.5mg..... Older and wiser, I hope!

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