quarter of a mg of pred

[Rosina1871]

I started with pmr in December 2018 and developed GCA in January 2021. I am now on half a mg of pred which I intend to stay on for two months. Would you advise I drop to a quarter? I feel well at the moment apart from arthritis which I believed has been masked somewhat by the steroids. Thanks

[DorsetLady PMRGCAuk volunteer]

it really depends on how you feel… some think it’s necessary to drop to 0.25mg - but many manage to 0.5mg to zero successfully.

Whatever you decide , suggest you try one of the slow tapering plans if you haven’t in the past.

It look me about 3 months to get from 0.5mg to zero…

Good luck whatever you decide.

[Rosina1871 in reply to DorsetLady]

Thanks. I’ve been doing the tapering plans. Guess I’m a little nervous of dropping to zero 😳

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

Understandable - I had a bit of a wobble part way through my final taper - so I just repeated current stage a couple of times.

You just have to give it a go - as and when you feel comfortable with it.

[Rosina1871 in reply to DorsetLady]

Thanks so much for your advice

[piglette]

There isno harm in giving it a go if you feel well. I would drop to 0.25mg for day then go back to 0.5mg say for six days and then slowly come down like that reducing the number of days on the old dose.

[Rosina1871 in reply to piglette]

Thanks. I will try that

[piglette in reply to Rosina1871]

Hope it works for you.

[Rosina1871 in reply to piglette]

Thank you

[SnazzyD]

Well I messed about for a year between 1mg and zero. I figured that I was so sensitive to every single drop from 60mg down and I had had such trouble with reestablishing my adrenal function and the dose was so low, why worry?

[Rosina1871 in reply to SnazzyD]

Thank you

[Mazxstitch]

I have been tapering by a quarter since I got to below 5mg. I am using DL's 5 week taper and am now on 2.5mg.

[Rosina1871 in reply to Mazxstitch]

Thanks

[keeptalking]

I went from 0.5 mgs to zero successfully and felt really good. I think psychologically too I felt great with the feeling I was pred. free after 5 years.

I have had one flare since and dealt with that with DL plan and am now on 1 mg again and ready to do the same regime as before to become free from pred. again.

If you feel well then give it a try.

[Rosina1871 in reply to keeptalking]

Thanks for your reply and good luck with your tapering 😊

[Gardenbay]

I am on half a mg a day, I have stayed on that for three weeks, so I decided to go one day 1/2mg then next day nothing, I find that sometimes when I am on zero, I get tired and lethargic. I have a pill cutter and I think cutting the pill into quarters would be difficult. But good luck.

[Rosina1871 in reply to Gardenbay]

Thank you

[paintpots]

I did go very slow from 1mg to zero and did used a pill cutter to quarter the tablets it took nearly a year of DSNS tapering but it worked. I was apprehensive to get down so low after 4 years of pred. Like you I had some artiritus come to the fore as I reduced but that's nothing compared to the pmr.Good luck.

[Rosina1871 in reply to paintpots]

Thanks

[Italybound62 in reply to paintpots]

I’m curious. Those who say arthritis appeared as they tapered lower. Did you have arthritis before PMR?

[Rosina1871 in reply to Italybound62]

No I didn’t but that was over five years ago and I’m nearly 78 now so it’s not surprising

[paintpots in reply to Italybound62]

I had an x-ray in 2010 and was told that I had arthritis, I had no symptoms and put it down to a miss read z-ray. However as I came off the steroids this year I started to get pain in the hip that I was told had arthritis in 2010. I think that 14 years on and 80 years old, I can expect some deterioration in the joints

[Loveopera]

Thankyou all - I am finding these comments very useful as I am about to go 1.5 down to 1 with the plan though I get intermittant dizzy heads which usually start with eyes going funny - i put it down to reducing steroids - very unsettling. . My Dr wants to put me low dose of statins but I want to get off steroids first- Am I right?

[Curry1960 in reply to Loveopera]

Hi - I’m currently in 8mg Prenisolone - started on 15mg in April. I also started taking Statins in May as my cholesterol is high. I’ve had no side-effects from taking both at the same time, so I’m sure you’ll be ok to start Statins. X

[Booch in reply to Loveopera]

I get that 2-3 day dizzy about 4 days after taper.

[Curry1960]

Hi Rosina - my GP has recommended tapering alternate days - at the moment I’m on 8mg. So I’ll start doing 8 one day 7 the next for two weeks, then hopefully 7 and 6 alternately the following two weeks. So rather than just stopping or fiddling around cutting up pills you could try 1/2mg every other day and see how you go? Good luck - you’re so close! x

[Rosina1871 in reply to Curry1960]

Thanks for your reply

[PMRpro Ambassador in reply to Curry1960]

Many patients find swinging from one dose to the other every other day like that quite hard and using one of our slowed tapers much more comfortable.

[Bronni]

Similar to you, after about 6 yrs, I dropped to 1/2 mg and stayed there for the best part of a year! - and was well the whole time, but felt no urge to rush it. Then dropped to 1/4 for a couple of months and then zero. That was 3 yrs ago 🤞. Good luck.

[Rosina1871 in reply to Bronni]

Well done

[LemonZest11]

Hi Rosina, well I think you have your answer in most of these helpful replies ... go with the 0.25 reduction. It's not that difficult to cut the tablets and if you cut just one at a time and use that before the next, you will get the entire 1mg over 4 days if the cutting is a bit wonky. No rush now, you're nearly there, no matter how long you give it. Well done you, terrific news.

[Odosmum]

If you are cutting 1 mg tablets, be aware that while cutting in half for 0.5 mg works quite well, cutting again to make 0.25 mg is quite difficult and you don't really know that you are getting the exact dose. My advice (for I have done this) is to miss days on the 0.5 mg dose. Start by missing 1 day out of 7 and keep reducing (slowly) until you take 0.5 mg every other day. That is effectively 0.25 per day. If that works fine, aim for larger gaps between doses.

[PMRpro Ambassador in reply to Odosmum]

Exact dose isn't that important - as long as it is less! And you even out over a few days.