Hello everyone,
knowing that everyone is different and also the “reduce by no more than 10%” rule, when did you start using the 1mg to taper? I have PMR/GCA, currently at 22.5mg. Down to 20mg is still 10%, but after that?
What has been your experience?
Hi, once I got to 15mg I changed to 1mg tapers, from 7mg then only 0.5mg each time.
20/17.5/15 is normal recognised taper - but not all can achieve that.
You could try 20 to 17.5, that’s only just over the 10%, but as you say we are all different, and you won’t know until you try!
Hi, through trial and error I started reducing by 1mg when I got to 20mg and by 0.5 mg from 10mg.
I went down by 1 mg from 20 to 10 then by 0.5 until 7 ( monthly) where I hit Adrenal troubles. I will push through again when I’m back from America - don’t want anything dramatic to happen in the middle of the Atlantic. Invest in a pill cutter and chop up a little supply.
I went down from 20 to 8 by reducing 1 mg or .5 mg, depending on how I felt, what was happening in my life, what the weather was etc. etc. etc. Sometimes I dropped .5mg a week. Sometimes I stood still for a few weeks and sometimes I went up .5 or 1 mg for a day to a week when I felt the need. I let my body be my guide.
I started tapering in September 2017 and am down to 7.5 as of today.
I have known people who needed 1mg even above 20mg to avoid feeling really unwell. And others who were perfectly happy with 2.5mg down to 10mg.
Basically - the first time you do a step down and notice it more it is probably time to go back to that last dose and then proceed more cautiously - and that applies to any size of reduction.
Hi
I went from 20mg to 18mg then by 1mg until 10mg then by 0.5mg
That sounds so simple written like that but it wasn’t always the case.
I did have Methotrexate added in at 18mgs as a steroid sparer to assist my reduction.
The best way is slowly, think tortoise & the hare! Use one of the slow methods then if you run into trouble you spot it quicker & you can go back to the previous dose.
Good Luck 🍀
I’m just at 17 mgs now but Rheumatologist has written a “plan” for going forward. He suggests 1 mg per month taper once I hit 15 mgs. Will see how that goes - saying that I’m on Leflunomide as a steroid sparer which presumably will make it a bit easier. So my docs recommendation is 15mg then go to 1mg . Good luck xx
It MAY make it a bit easier - but there is no incontrovertible proof.
The best laid plans of mice and men...
was saying that to Hubbie the other day - when Rheumy asks me if Leflunomide has helped - how will I know unless I have tried it with and tried it without, or unless I stop taking it and assess the difference! A bit daft really! Never stopped me developing diabetes though, that’s for sure! :/ x
Thanks hev,
What is lefluomide? Similar to Actemra?
Leflunomide is similar to Methotrexate - DMARD, not a biological drug like Actemera. From what I’ve noticed people don’t seem to have as bad side effects as they do with Methotrexate. Think the biological are the next step up to the DMARDs - all the Actemera will be better/more effective I guess xx
All depends - leflunomide can have awful side effects. Diarrhoea is very common and it potentially has some serious effects.
My doctor started me at 15 mg about three years ago, and I started, as per her instructions, to reduce by 1 mg per week after five weeks. When I hit 9 mg pain began to return and at this point I went back to 10 and started dead slow nearly stop taper which enabled me to reduce by 1 mg per month. After 7 mg I did this by dropping only .5 mg at a time, but still able to taper by 1 mg per month or six weeks by tweaking DSNS method, At around 4 mg I started tapering by only .5 mg about every six weeks, and the lower I got the slower the taper. I was at 3 mg nearly two years ago, have been as low as 1.5 but currently at 2, hope to try tapering again soon.
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