DITHERING ON 1/2mg

[sampete]

I've had PMR for 5 years and managed now to get down to 1/2mg for two weeks. How long do you suggest before I stop altogether? Think the thought of giving pred up altogether is a bit scary, or am I being paranoid?

[DorsetLady PMRGCAuk volunteer]

I would stay there for at least a month, maybe two… and then use a very slow tapering plan to get to zero.. you can take as long as you like/feel the need to.

Hopefully it will go smoothly, but if you do it slowly you can monitor it more closely and react - if necessary.

[sampete in reply to DorsetLady]

Thank you, will do.

[SnazzyD]

I mucked about with crumbs of Pred for a year just not quite being able to bring myself to stop. No idea if I needed to but one day in the middle of long Covid I just knew it was the day in August 2020.

[sampete in reply to SnazzyD]

Thank you will see how it goes, fingers crossed.

[Sandmason in reply to SnazzyD]

I have a special bottle labeled "crumbs" in case I ever get to that point.

[SnazzyD in reply to Sandmason]

Very organised!

Are they all of the same use by date? Mind you when you are at that stage it’s possibly getting a bit placebo-like anyway.

[Sandmason in reply to SnazzyD]

We don't exactly abide by use by dates, being a doctor family. Once my daughter, who is a high level Infectious Disease doctor gave me a leftover bottle of Clindamycin that was expired by 10 years, lol. It worked fine on a dental problem. Some drugs it matters more than others.

Problem is with the crumbs is that some could be crumbs of 10, 5 or 1mg, so they will not be relied upon.

[piglette]

As DorsetLady says give it at least a month. If you just go to zero for one day then carry on as normal for say six days and see how you feel. You could then try for two days at zero and then go back to taking the pred for five days and so on. Then one day you will find you don’t need to go back to the pred!

[WearyLucy in reply to piglette]

This is what I did, although I went to 0.25mg, just to be extra cautious. I took my last dose on 16th December 2024 and I’m crossing my fingers that I’m in remission.

[piglette in reply to WearyLucy]

That is fantastic. How do you feel?

[WearyLucy in reply to piglette]

Thanks for asking …No pain or stiffness, some days I still feel really tired, but mostly my energy levels are up. I’ve continued to work 4 days a week throughout (I’m turning 61 this July). I’m walking in the pool once a week for an hour, and to the gym once or twice a week to rebuild muscle strength. I’ve also lost 20kg over the past 2 years which I gained when first on Pred. Still dealing with Osteoporosis but I’ve had no further fractures. This site has been very helpful over the 3 and a bit years since first being diagnosed - thank you all for your insights.

[piglette in reply to WearyLucy]

It sounds as if you are on the road to freedom!

[Maryis80]

I am down to 1mg per day after nearly 8years. Thought I had got there last year but had to start pred again. At a recent visit to rheumatologist he more or less said keep on taking one a day and have me prescription for 200 pills! Have to have blood test in three months and see him in September. Like you I am a bit scared of stopping completely

[DorsetLady PMRGCAuk volunteer in reply to Maryis80]

Sensible Rheumy… but you could try a reduction as and when you feel up to it, at least there’s no pressure on you.

[Posey1]

Me too! After 3years on pred I have tapered to 1/2 mg. I have been on that for over 2months. Like you I am concerned about stopping altogether. I posted this a few weeks ago and took on board D L's advice. Why the rush, which makes sense at this low dose. I shall stagger the days I take it gradually.Good wishes.