Having started at 20mg 2 years ago, I am currently on week 2 of the DL 5 week tapering Plan from 5.5mg to 5.0mg, which was always the level my GP initially said I should be aiming for.
Having just read another post about a Flare when below 5mg, this appears to be a common problem, and is something I am becoming increasingly concerned about.
The very helpful advise that I have read and received on this Forum, emphasises we are not in a race to zero Pred, and that slowly slowly is the key to successfully getting to a level, as near as possible to zero, that our bodies will dictate.
Faced with this possibility/probability of a Flare or Flares in the coming months, I am very concerned, and this is actually causing me an unusual level of anxiety.
My worry is; how do I reduce Pred by the recommended 10% once I get below 4.5mg, and hopefully avoid Flares?
I am currently cutting 1mg in half, I am not sure I could accurately cut the half mg again or cut 1 mg into thirds.
I am probably getting myself "all worked up" unnecessarily by this, I suspect there is a chart somehwere that I have missed, your usual helpful advice will be very much appreciated
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Golf-1
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"I am probably getting myself "all worked up" unnecessarily by this"
I think you probably are. All you have to do is taper very slowly, in as small steps as is reasonable and be aware of symptoms returning - not be in denial.
As you know, you are tapering looking for the lowest effective dose, not necessarily zero. And obviously, as you get below 5mg you are getting closer and closer to that destination. The idea of titration is to slightly overshoot and then return to the last good dose - it isn't the end of the world if you feel symptoms, that confrms you have arrived, What you don't do is carry on regardless!
Nor is it a problem if cutting a tablet isn't accurate - it will be less than a whole tablet but not as much less as a whole tablet. And 2 halves make a whole on consecutive days, 10% is a recommendation, it isn't written in stone. But a step that is 20% needs additional measures. Using one of the slowed tapers also helps - details in the FAQs under Tapering.
You may be getting fixated on the 10% factor…. and being anxious about what may or may not happen is the future is waste of time and effort…
You can extend my 5 week taper to repeat each step twice - giving a 10 week one. Or use the ultra long one …which in essence is the 7 week one repeated….
If you want to reduce in 0.25mg steps, you can achieve this by halving 2.5mg tablets. This way, you can get down to 1.25mg without having to cut anything into quarters.
As others have said, I think you are overthinking this a bit.
To get from 20mgs to 5 in 2 years is a lot quicker than many on this forum. I'm currently on 1 mgs from starting at 30 about 6 years ago, with no flares (so far) on the way. This was by a combination of dead slow and by full stop for about 3months at 10 and 5mgs. Not sure of the effect on the PMR but sticking at a certain level lets you forget about tapering regimes etc for a bit so I'm sure has some kind of mental benefit.
Hello, I am in the same boat. GCA/PMR started pred in April 22 was down to 4 mg and have just had to raise up to 9 for 7-10 days and hopefully back down with no problems then; fingers crossed.
I’m on my third ‘journey’ down from 5mg…it doesn’t happen overnight! But no point pre-worrying, a flare may not happen. It didn’t happen for me the third time I tried! Patience is key.
As Dorset lady says, don’t get fixated on 10%. Like most people find, the medical advice about 10% and two years on Pred doesn't often work in practice. Just keep tapering by Img or half a mg using the tapering regimes and accept that there may be ups and downs. I’m down to 2mg after six and a half years. I’m having a go at getting to 1.5 after sticking at 2 for three months (I have other health problems to worry about) but I’m not fretting about it and haven’t given the 10% idea a thought. I know must doctors probably think we’re all bonkers sticking at these low doses , but we know we’re not.
I started at 15 mg in March 2022 and have just tapered to 1. I was cutting them in half, but the rheumatologist (at Addenbrookes - they're good) suggested doing alternate days, eg 5, 4, 5, 4 until you know you are ok on the lower dose. And not to rush it.
But it seems odd to me that it does actually work well … no matter how many week you’re on it, you are in the same position on the last week that you were on the first…
. ,, whereas on the tapers we promote at least at the end of the taper you are fully on the lower dose.
Looks like you are doing pretty good to me, except for worrying about something that hasn't happened yet and may never do so. Stress is your enemy so take it for a good walk or do something that makes you happy. Personally I subscribe to 'Positive News'magazine and the occasional spiced rum (and a walk).The only doctor I got real help from on my steroid journey told me to do exactly what you have done but that when I got down to 4mg I would probably plateau for a few months and then slowly reduce again. Sensibly he took early retirement.
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