Hello, I want to do this right this time. I'm back at 7.5mg after 4 failed tapers. I get as low as between 1 - 3 mg (using 7 week DSNS method) and then I flare. I am beginning to believe it is from steroid withdrawal because my labs are always normal.
So starting all over again.
What is the best method to taper beginning now at 7.5mg? Can I simply just drop 10%? and stick with 6.75mg for a month until the next 10% taper?
And then when is it recommended to begin the 5 week/7 week/14 week DSNS taper methods begin? Is that for 5mg and below (or which amount)?
or should I start using the DSNS method now already and combine with 10% maximum drops?
Sorry for all the questions. I spent good part of today going through many posts and the FAQs looking at taper methods and Adrenal insufficiency info. So valuable!!
Thank you.
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Italybound62
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Personal as you know I'm in remission for over 1 yr so this is my advice.
Start dropping .5mg at a time with weeks to months in-between drops.
When you get to 4-3mg only drop by .25 mg and again time and more time in-between.
Adrenal insufficiency I had and it's horrendous. I was so exhausted I could hardly do anything.
This is why in my previous post to you I said if you hit this either go up to previous dose or stay put for as long as it takes. Personally if I had to do again I would sit at 5mg maybe 4mg where I first realized that exhaustion for up to a year. I did this but at to high a dose to allow the adrenals to really kick in.
When you said a flare but your bloodwork was ok can you describe your flare.
I was at the end in crisis with rhumitologist yelling at me I could be dead. Not fun.
Thank you. So the initial .5mg drops are using the DSNS method?
my flares are very mild . nothing like original PMR . Mostly some shoulder and arm stiffness/pain in the morning upon waking. Often it’s just left side. It goes away quickly after moving around
I would agree that 0.5 mg drops with months between them is the way to go. I usually go for somewhere between 1 - 3, depending on how I feel and, more importantly, what's going on - vaccinations, holidays, friends visiting etc. I think it's hugely important to take account of changes to daily routine, even if they are positive and beneficial.I've managed to get down to 0.5 mg per day and am staying put for the time being. Twice I have stopped but had to restart at 5mg. I'm not keen to try again any time soon and the medics are happy.
I'd be shy too, and .5mg is not effecting your bones or much else but keeping you stable.I've been odd and had no problem tappering while on holidays, but mind you I always found my holidays stress free and I was diving which is a happy place for me.
As Charlie said we are all different but so important to listen to what our body is telling us.
It sounds to me as though you might be overthinking your taper. In my experience, there is no “right” way to taper, as everyone’s pmr is different, and even different at different times!
I tried the 7 week taper two or three times, and it did sort of work, but I also just dropped by .5mg on some occasions. ( that’s when I was below 10mg). For me, it was a matter of listening to your body, and NEVER decreasing if I felt any symptoms. Sometimes this meant staying at the same level for a number of weeks. Sometimes it meant going back up by 1mg or even a half mg.
Pmr has a mind of its own, and will do what it wants to do. Very difficult to manage, I agree, but it is what it is.
You can introduce a slower tapering plan at any dose…it’s just there to help when you need it. You can extend any taper any repeating each stage -and as many times as you wish. For example my 14 week one is just the 7 week one repeated at each stage.. there is nothing to say you cannot make it 21 weeks or even 28 weeks.
Plus stay at each dose as long as you feel necessary.
Most people find that 0.5mg is okay above 5mg , but then may need 0.25mg…but you need to gauge it to suit you and your PMR .
If you get to 3mg OK each time it isn't your tapering that is at fault. Your body is telling you that 3mg is the dose you need. if you go lower - you will flare. No way of tapering will alter that until the underlying disease process has burned out and gone into remission.
You are tapering to find the lowest effective dose. You do that by tapering slowly and in small steps, allowing enough time between to see if the new dose is still enough. And as soon as you realise THIS new dose isn't enough, you go straight back to the PREVIOUS dose. Possibly using a short flare protocol to get on an even keel again but always returning to the dose ABOVE where you flared,
Then you don't end up yoyoing the dose which can result in it becoming ever more difficult to get lower. Once you find that first stable dose - identifiable at the latest when you flare twice at the same dose - you wait a couple of months before gingerly trying a 1/2mg taper. If it works great, wait a bit and try again. If not, accept you are where you were and be patient.
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Tapering - how long on 10mg?
Abandon current taper or?
Advice please
TAPER
Tapering again, sorry I'm new to this
