The 10% Rule

[Jim-CJ]

We see the 10% rule for tapering in several posts. Is that for a single taper & over what period of time; i.e. a month, a week, a day?

Thanks So Much For Your All Help,

Jim & CJ

[betty1943]

You will probably read Jim-CJ that everyone will be different. If you like I will send you my taper, I have gone from 40mgms to 2 mgms over nearly 18months. From January I will be trying to reduce the last 2mgs over 2 months. I have GCA. Reading everyone's post that would not suit each individual but apart from one hiccup it's gone ok for me. Good luck and keep reading these posts you learn so much, the local groups are also worth joining for support.

[Jim-CJ in reply to betty1943]

Thanks for your response. Sure would like to see your taper method.

Jim & CJ

[betty1943 in reply to Jim-CJ]

I obtained this taper from this site and thought it a good idea, so it is what I am going to follow when I start to reduce from 2mgms.

I will reduce 0.5mgms as new dose.

1 day new dose = 1.5mgms

6 days old dose = 2mgms

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

continue until 1 day new dose, 1 day old dose. Then

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

I hope you can follow this.

[Jim-CJ in reply to betty1943]

Thanks Betty1943,

This is a 27 day cycle. We followed a similar one when we were at 20mg. But at 18 we decided to split dosages and use a delay capsil. Blew our plan out of the water. Two back to back flares. We do want to use this method once we spend at least 30 days to get the inflammation under control.

Thanks So Much For Your Input,

Jim & CJ

[PMRpro Ambassador]

The 10% refers to the size of any reduction step down: if you are currently taking 20mg then the reduction should be less than 2mg, to take you to 18mg. That then would mean that 10% for your next reduction would be 1.8mg, rather difficult to cut tablets to get that but 1.5mg is possible if you have 1mg tablets to cut in half and 1.5mg will do as far as 15mg. From then on, we suggest 1mg drops to 10mg. Below 10mg can always be tricky - and so 0.5mg reductions are fine, less than 10% of your dose until you get to 5mg.

But the dead slow and nearly stop approach will always provide an alternative that requires less arithmetic! Spreading the drop over a few weeks means your body gets used to the new size of dose slowly and even 2mg drops are tolerable.

healthunlocked.com/pmrgcauk...

[Jim-CJ in reply to PMRpro]

Thanks PMRpro,

You said over a few weeks. Would one month fit the method? We had to go back to 30 recently ( we think our support level). We were tapering 1 mg a week from 30. Got to 26 and had a flare. Not as bad as some of the past flares, but bad enough to get us back to 30. The 1 mg per week prompted my question about over what period of time does the 10% rule apply. In our case, per week did not work.

Thanks Again,

Jim & CJ

[PMRpro Ambassador in reply to Jim-CJ]

1mg a week is far too fast - if you are going from every day one dose to every day the new dose you need at least 2 or 3 weeks at the new dose to be sure it is still enough, preferably more - that has been said so many times on the forums I'm surprised you haven't seen it at some point. If you keep reducing relentlessly so fast you can't know at what point you overshot the right dose.

Do read what I have written in that link - it is to save me having to write it all out 2 or 3 times a week. If there is anything there you don't understand ask the specific question.

[Jim-CJ in reply to PMRpro]

Thanks PMRpro for your reply. I understand that any drop, even though less than 10%, needs time to stabilize. So we could have gone 2mg from 30 and held for a month, and been better off. Also, in looking back at our records, we should have rested at 30 longer. We will stay at 30 for a month to stabilize, then taper. We may do the up&down routine (similar to the dead slow method) from there on. Will have to put a plan together for that.

Thanks Again,

Jim & CJ

[DorsetLady PMRGCAuk volunteer]

Hi Jim &CJ

Think you're wise to stay at each reduction for a month, that then gives a good indication of whether everything is okay. Some people manage to reduced every two weeks, but I always think that a bit risky, it can take sometimes that long for a flare to materialise properly.

As PMRpro says, if you reduce again without being sure that the inflammations is under control it can lead to more problems later on, much better to be as sure as you at each stage that things are okay. It may seem to be longwinded - but much better than having to increase again - that becomes very demoralising.

You have to realise you are in this for the long haul - unfortunately. It's not like lots of illnesses, take a course of tablets and it's cured. You cannot rush GCA PMR, it takes as long as it takes, and you have to control it best you can along the way.

I think we all find that difficult to come to terms with at the being - we're so used to being in control - and with these illnesses we aren't always!

[Jim-CJ in reply to DorsetLady]

Thanks Dorset Lady,

We will use the one month rule for all of our tapers in the future, which for my wife will be well over three years from now.

Thanks Again,

Jim & CJ

[HeronNS in reply to Jim-CJ]

May I humbly suggest that it's a guide, not a rule, and at lower doses even one month may need to be extended. As PMRPro has said numerous times, "It isn't slow if it works". Your wife is lucky to have such a concerned partner, mine is fairly oblivious!

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

I didn't imply it was 'a rule' - I think lots would agree in these illnesses there seem to be no rules. We have to do what is right for us. Those of us who have gone before can only advise from our own experiences.

[HeronNS in reply to DorsetLady]

Private messaging you.

[Jim-CJ in reply to DorsetLady]

Appreciate the experience of others VERY much.

Thanks DorsetLady,

Jim & CJ

[Jim-CJ in reply to HeronNS]

Thanks HeronNS for your comment. "A Guideline" works for us. Tough not to be impatient.

Thanks Again,

Jim & CJ

[HeronNS in reply to Jim-CJ]

I know what you mean. I have a little agenda book in which I write my dose, and also what I anticipate will be coming up for the next month or so. It's a good thing I use pencil because I can't begin to tell you how many times I've erased and changed things!

[Jim-CJ in reply to HeronNS]

We use a calendar and keep it next to the prednisone. And we use an excel spreadsheet to track every thing.

Thanks For Your Comments,

Jim & CJ

[Sheilamac in reply to Jim-CJ]

Don't think of it as a one month RULE. The length of time you maintain the new dose will probably have to vary, but until you get settled at the moment, it's a good starting point. You have to be sure that the inflammation is cleared out before you start reducing again. You have to read your body and not force a reduction. Unfortunately, PMR is in charge, not us!

Btw, 3 years of Prednisolone is far from unusual and with the DSNS method you have a chance of having no flares. That would be wonderful! I will certainly be a total of 3 years before I'm finished but with this method I am determined that I have no flares to take me back to the beginning! That to me is more important than getting off this drug! Obviously there are other causes of flares, like doing too much, stress etc but I do my best to keep these things under control too.

Good Luck! Think tortoise and hare. 😄

[Jim-CJ in reply to Sheilamac]

Thanks for your advise. We are at 30mg & holding.

Jim & CJ