Nearly 12mths on Pred - update

[Middleton22]

I started with the pain in January 22 and luckily I was diagnosed with PMR in February after loads of tests etc and started on 15mg pred. Been tapering all year and now down to 5mg. GP rang me yesterday for a chat and an update on my progress. Explained exactly what I was doing (DL taper) and she suggested that I stay at 5mg for 4wks before tapering down. So my question is do I taper to 4mg or 4.5mg. I understand that the lower you go there is more chance of a flare and at this moment I am feeling okay...no pain but a little stiff in the morning which seems to disappear when I start to move about.

I cannot put into words how this forum has helped me this year as when I received the diagnosis of PMR I was absolutely distraught. Many, many thanks to everyone who has given me advice this year and hopefully will continue to do so. Happy New Year to everyone.

Sorry for the long post but I am now feeling much happier and looking forward to 2023.

[piglette]

I found that under 7mg a 0.5mg worked better. Half a milligram reduction gets larger and larger as a percentage reduction as you reduce. It is really worth going slowly in my opinion, particularly as things seem to have gone so well for you so far.

[Middleton22 in reply to piglette]

Thank you for your advice. Yes I think that you are right and I plan to start tapering to 4.5mg at the end of January. Hopefully everything will go well (fingers crossed). Don't want to have a flare but GP told me to ring the surgery if any problems arise. I know that I can also ask you lovely people and you will put me on the right track. Many thanks .

[piglette in reply to Middleton22]

Sounds like you are in good hands. My problem was unbelievable fatigue, but you seem to be OK luckily.

[Middleton22 in reply to piglette]

Yes I did have some bouts of fatigue but I stuck it out and they seemed to disappear after several days although I do have a snooze most afternoons.

[PMRpro Ambassador]

I would do just 1/2mg drops from now - the basic rule is not more than 10% of the current dose. Not only is there a risk of being close to your desired "lowest effective dose" but your adrenal function has been suppressed for the last 10 months and it has to wake up again which doesn't happen overnight.

[Middleton22 in reply to PMRpro]

Yes I understand what you are saying and will do the taper to 4.5mg at the end of January. Many thanks for your quick replies....makes me feel secure to know I can get answers from this wonderful forum.

[PMRpro Ambassador in reply to Middleton22]

I forgot to say that one top PMR rheumy in the UK likes to keep patients at 5mg for up to 9 months before continuing the taper. I suspect 9 months is for patients who have been at high dose pred for GCA for longer than average - but he is never in a hurry at this stage.

[Middleton22 in reply to PMRpro]

Many thanks for your information. Will see how I go at the end of January with taper to 4.5mg.

[tempusfugi in reply to PMRpro]

Wow! that is a long time. Quite an extreme example compared to so many GPs/Rheumies who constantly seem to want to race to the bottom!

[PMRpro Ambassador in reply to tempusfugi]

It's because he understands the nature of the beast - there are some! My own rheumy - albeit not in the UK - is very relaxed about the dose I need to function and even with Actemra doesn't expect me to get under 5mg after so long on pred.

[tempusfugi in reply to PMRpro]

Thanks, PMRpro. I've only seen my rheumy twice (2022 was the year PMR started for me) and I'm due to see him again in February. The first was a private appt, then I moved to his NHS consultancy. He was quite different on the second occasion (didn't seem to be listening to me in the same way)! I have a feeling he will push me to reduce my Pred dosage more quickly than I would like but, thanks to this forum, I have more confidence in dealing with him now. Nevertheless, I'm sort of dreading seeing him which isn't good but guess I'm lucky to be even doing so.

[PMRpro Ambassador in reply to tempusfugi]

The really good ones don't hear the money speaking - it is poor when they do. Mind you - it works the other way too, a bad NHS rheumy takes their poor performance with them and charges you for the pleasure!

[tempusfugi in reply to PMRpro]

You'll like this one: when I saw him second time, I told him I wasn't taking AA as yet because I had some dental treatment coming up. To cut to the chase, his answer was 'you've got more money than sense'. I unfortunately wasn't quick enough to respond with 'that's not what you said when I paid £250 for my private appt with you'! Ok praps I didn't explain my periodontal treatment properly to him but I was somewhat astounded at his response.

[PMRpro Ambassador in reply to tempusfugi]

Was that as an NHS consultant? I'd have reported him - that is just downright rude and not acceptable whatever the context.

[tempusfugi in reply to PMRpro]

That was as an NHS consultant. I should have done what you said, I suppose, but I felt so weakened by the whole b...y PMR thing and so reliant on him that I didn't. I'm not like you...

[PMRpro Ambassador in reply to tempusfugi]

"I'm not like you."

Probably just as well

[tempusfugi in reply to PMRpro]

Kinda wish I was though🤣

[alangg]

Definitely 1/2 mg drop - at the most and stay at the new dose for a longer time than you would normally! It sounds as though you have been very sensible in your reduction regime and it would be a shame to spoil it now.

As PMR Pro says, your adrenals have to resume their production and (as a non-medic) I think that the body takes a long time to realise that it is running low on the steroid and then to resume or increase production and it is in this period that the PMR can flare up as there is insufficient steroid to reduce the inflammation. A bit of a 'quack' theory I know but better be safe than sorry!

[MiloCollie]

Gosh you’ve done really well to get where you are. Well done. I would taper down .5mg a month now but that may be too slow for you psychologically as you’ve been at it less than a year. See what the others say on here. Good luck 😜

[PMRpro Ambassador in reply to MiloCollie]

Nothing is slow when it works!

[Bcol]

Good morning and happy new year. You are doing really well and no point in rushing at this stage, so 0.5mg a time. I work on a five week cycle, but don't hesitate to make it longer if I think it's necessary.

[Middleton22 in reply to Bcol]

Happy New Year to everyone on this wonderful forum. Had friends round last night to welcome the New Year in and feeling a bit tired now but just going to rest all day and do nothing. Thanks for the advice re tapering which I intend to start in 4 weeks if all is well.

Hoping 2023 is better for us all.