How long to stay on 2.5

[diana1998]

I have been on pred for PMR for 7 years. I was on 3.5mg then 3mg for all of last year so I'm an ultra slow dropper but with no pain. I'm busy so it's difficult to find a stress free week. Having just dropped to 2.5 successfully on 26th Jan I'm wondering when to attempt the next drop. Would 6 weeks be too soon? I thought maybe after Easter would be safer. I'm a real wimp and feel I should have been off pred ages ago. But lack courage. I'm fine out and about in the mornings but around 4pm I'm flaked out and sleep for an hour ready to face the evening. My synacthen test at 3.5 was good.

Thanks in advance 😊

[PMRpro Ambassador]

At this stage I think 5 or 6 weeks between attempts to drop the dose is probably ideal. But only trying will show if it will work.

[diana1998 in reply to PMRpro]

Thank you

[PastelsinArt]

Have you tried the Dead Slow Nearly Stopped (DSNS) method of reducing? This means you take the next step down only one day the first week, 2 days the following week (spaced out), 3 days the week after and so on until you're at the reduced dose. There are charts illustrating various speeds to do it and someone more skilled than me will be along soon to show you how, I'm sure. I've been doing it this way and taking a very long time to get from 2.5 to 2mg with interruptions when I wasn't well or was under stress. Good luck.

[diana1998 in reply to PastelsinArt]

Yes thanks. Forgot to add that I'm with a highly qualified nutritionist and cutting out added sugar to lower the inflammation has really helped me. I'm also virtually gluten and dairy free too over the last 6 months and although my bloods are always normal they are even better now especially the cholesterol. Diet is an amazing thing and so interesting. I do a weekly diet sheet for her which is a great discipline. 👍

[SnazzyD]

It certainly can be daunting going it alone. Your adrenal glands need to work in all circumstances so need to be trained for it. waiting for the right time may just been you are chasing the pot of gold at the bottom of the rainbow because life often doesn’t work like that. Sure, if you were going through a major stress period like moving house or something I’d wait because there’s a clear end to it. Otherwise introduce the next 0.5mg drop over a long period as has been suggested. I even got to the point of chopping the 0.5mg’s into halves I was so nervous. If your adrenal glands really can’t cope (you’ll feel ill) it is easily addressed with very fast results. Don’t be too afraid of feeling tired because that is normal when the system is getting to grips with needing to function all day every day. I felt tired for well over a year after stopping Pred altogether.

[DorsetLady PMRGCAuk volunteer]

If you are having a dip around 4pm, then no rush to reduce again-try and get through needing that -unless it’s adrenals and not PMR.

Sometimes it’s difficulties know at such low doses.

But slow and steady will help both.

[Charlie1boy]

For what it’s worth, I think it’s good to take a siesta in the afternoon. I was on pred for seven and a half years with pmr, and with a very slow taper. Throughout, I took a siesta lasting between a half hour and an hour just about every day. No trouble at all falling asleep. Not sure if it was the pmr, or the pred, or just getting older - don’t think that really mattered too much.

My view is that , if your body tells you you need a rest, then do as your body says!

Sounds to me as though you are being very sensible and are doing well.

Good luck.

[diana1998 in reply to Charlie1boy]

Yes, I can't survive without a short zizz since I've been on pred. Think I'm now programmed to have one, I'm OK if I'm out and can't have one!

[Charlie1boy in reply to diana1998]

Yes, I know the feeling!!!

[Purpleazalia]

What you are doing seems to be working well for you.

My PMR symptoms will begin to return between weeks 2 and 3 if my condition isn't ready for less pred - so allowing 6 weeks wouldn't be too soon.

On the other hand, if there's no pressure from your GP, and leaving the next drop until Easter will give you more confidence - why not wait that bit longer? It would give you more time to clear your diary and let people know you're having a quiet week or two.

Hope it goes well x

[diana1998 in reply to Purpleazalia]

Thanks. Gp just dishes out the pred as and when so how I drop is up to me. I've never had to do DSNS..... so far!

[diana1998]

👍

[Jackoh]

Personally feel you’ve done so well. Interesting that your diet has helped you too. 💐

[diana1998 in reply to Jackoh]

Definitely has. But feel I've been on pred forever!

[Jackoh in reply to diana1998]

Not as long as me! 💐

[PMRpro Ambassador in reply to Jackoh]

Or me!!!!! 13 1/2 years and counting

[diana1998 in reply to PMRpro]

Yes, I follow you daily!! My friend is 11 years and Fed Up!

[Marinescience]

I agree with others that say you are doing well! I would just add that at your low doses, even 0.5 mg/day reduction is starting to be a relatively big drop in percentage terms. Given that, the suggestions to try one of the tapering plans, or reducing by 0.25 mg/day(requires some pill cutting skills!). Good luck with your journey.

[diana1998 in reply to Marinescience]

Thank you. Will do DSNS drop if necessary.