By how much should I taper?

[kathleen18]

By using DSNS method I managed to get from 8mgs to 7 1/2mgs after a few false starts. I am now on my way to 7mgs. Dr. advised reducing 1mg a month, but I feel that will be too much too soon and intend to continue on the DSNS method, but my question is once I am down to 7mgs do I then reduce by 1mg or just 1/2mg? It would be easier to reduce by 1mg as it would avoid having to cut pills in half, but I don't want ruin the whole process. Advice/opinions please. Thank you.

[Mary63]

Bearing in mind the perceived wisdom is not to reduce more than 10% at a time......them half mg at a time makes sense. Less chance of steroid withdrawal symptoms. Less chance of going to too low a dose to control symptoms. Get a pill cutter from your pharmacist. It’s easy!

[kathleen18 in reply to Mary63]

Thank you. I rather thought that would be best, pill cutting it is then!

[peace_lover]

I would go for half mg at a time, a whole 1mg is a lot at this low dose. Pill cutters are good, or just use a sharp knife on a wooden board with a steady downward slice - I do this and don’t get any crumbling!

[kathleen18 in reply to peace_lover]

Thank you, I get crumbs even with a pill cutter!

[venezia1]

I have just reduced from 7mg to 6.5 by the slow method. I didn't use a pill-cutter, just a combination of 2.5, 1.and 1 in the morning and 1 plus 1 at night. A lot of 1s, I know, but saves fiddling around!

[kathleen18 in reply to venezia1]

Thank you. I don't have any 2.5s so it will be the pill cutter!

[DorsetLady PMRGCAuk volunteer]

Hi,

Definitely go for the 0.5mg, especially if you had problems previously.

If you are getting 5mg and 1mg tablets now why not ask for 2.5mg and 1mgs instead then you can mix and match as suggested, although once you get used to pill cutters they’re quite easy. Just make sure pill is inserted correctly and be firm but not too forceful.

Bit like Brexit really 🤔🤣

[PMRpro Ambassador in reply to DorsetLady]

It will matter whether they are 2.5mg coated or uncoated!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes, but as Kathleen is on uncoated ones now, as she’s already cutting them, then presumably she can/will be prescribed uncoated 2.5mg instead of 5mg.

Not necessarily I know, but .........

[PMRpro Ambassador in reply to DorsetLady]

Just pointing out that you need to know - and some places probably won't thole handing out 2,5mg tablets as I have no doubt they cost more than 5s and 1s...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes they do...£1.33 compared to 95p & 72p.

[PMRpro Ambassador]

If you slow the DSNS down even more you should be OK with 1mg at a time although 1/2mg is even better OMHO because the lower you get, the nearer you are to the dose you are looking for. You can do each step as many times as you feel you need - and you can tell if the larger drop is too much for you.

The DSNS was worked out to cope with the fact that enteric coated pred tablets can't be cut and at the time there were no 1mg tablets available so either you did 2.5mg at a time or had to use plain tablets which upset some people's stomach too much.

[kathleen18 in reply to PMRpro]

Thank you for all your sound advice, confirming what I thought really. I have only 1 and 5 mgs tablets so will continue with those. I should be down to 7 mgs by next month, whether I stay there for a bit or progress to 6.5 mgs after that, I'll see how I feel and there is Christmas on the horizon and all that that entails!

[PMRpro Ambassador in reply to kathleen18]

I'd wait until after xmas - and there are rheumies who say to not reduce in the winter!!

[kathleen18 in reply to PMRpro]

Good idea, I had wondered about it. It is so good to have one's thoughts confirmed - or not, as the case may be!

[Carrollee in reply to kathleen18]

Hi Kathleen. I have just finished the drop to 7 and am now starting 61/2mg. My uncoated 5mg tabs have a deep groove across them which makes them easy to snap in half with fingers. So I use 4x1mg tabs and 1 half of a 5mg to achieve 61/2mgs. Using these tablets I can’t see any problems til I get to 11/2mg. Is there no groove across your 5mg tabs? Maybe it’s just the company that make mine do it. Take care and all the best cc 🤗

[kathleen18 in reply to Carrollee]

I will have a look. Until now I have cut a 'one' to make the half. Never thought of cutting a 'five' - maths never was my strong subject!!! I think you may have revolutionised my life!

[SheffieldJane]

I came unstuck by trying 1 mg drops. This is the problematic stage as you probably know. Some of your symptoms may well stem from your Adrenal glands having to work for themselves. Reducing more slowly gives the transition a better chance of being successful. I know it’s a faff but so is a flare. Good luck! GP may not understand any of this, mine didn’t.

[kathleen18 in reply to SheffieldJane]

Thank you it is good to have these comments and help.

[SheffieldJane]

Sorry! Note to self “ scroll down before adding your two pennyworth.

[PMRpro Ambassador in reply to SheffieldJane]

Why? Reinforces the lesson when multiple people say the same!

[Telian]

Reiterate - reduce by .5mg, you're more likely to get there without hiccup - and ask for 2.5mgs..... they'll come in very handy....

[kathleen18 in reply to Telian]

Good idea, thanks. Looks like it will definitely be .5mg when I eventually get there!

[Telian]

You will if you take it slow, there is no rushing this illness or it will come back and bite you. How long have you been diagnosed?

[kathleen18 in reply to Telian]

Just under 2 years. Symptoms started around Christmas, diagnosed March.

[Telian]

You're still fairly early on and hopefully be starting to improve, although GF might not be the answer in terms of PMR to eat low carbs and sugar is key in avoiding steroid induced diabetes. ATB.

[kathleen18 in reply to Telian]

Sorry! Don't understand your abbreviations! What is GF and ATB?

[Telian]

It's Gluten Free and All The Best but forget the former, I've been talking to someone else about diet and my pred head has taken over - I've replied to you instead on that one - sorry.

[kathleen18 in reply to Telian]

We live and learn!

[Telian]

Not so sure about the latter!

[Christophene-Returns]

I had a consult with a vasculitis expert at Johns Hopkins University about 6 mo. from diagnoses 2016.. Her plan was -2mg and hold for at least a month before going down further. It has taken 3 years (almost) to get from 16 to 4. I was miserable at 4, mentally and physically. so I went up to 8 and feel human again. Tapering is not something to do without flexibility. Sometimes we need to raise our doses.and not feel guilty about it. Stay at higher dose until you feel reasonably well before going down.It's not a competition. Depending on many different factors, some of us take longer to taper than others and that's OK. The last thing you want is a flare up.