The Steroid Taper - Advice, if you please?

[billinSurbiton]

Sorry for not checking in for a while... I struggle to keep everything ticking along...

WHEN I LAST sought sage advice here, I was reeling from the effects of my GP taking me from 30mg Prednisolone to 10 in one swoop; it was not pretty, you may recall. Since I last saw him (3 weeks ago) I went back up to 30, with the intention of dropping 1 mg a month, as I have seen outlined here. I THOUGHT he was onboard with this, but I finally looked at his directions, and he asks that I decrease 1 mg per WEEK. I'm seeing him next week, so more negotiations; he's quite open to suggestions, so it will be fine. I've got this idea- please tell me if it is ill-advised: I was going to try going down 1 mg/weekly UNTIL I got to 20, then change to a monthly decrease. Why? Frankly, I don't know; it's nothing more than intuition and feeling that I don't want to stay at the high end of dosages longer than I need to. I'm feeling, after 3 weeks at 30mg, more stable, more free of pain, and more ambulatory. The balance problem is still there-no decrease of THAT, but I can walk again without stick or crutch. STILL get very tired - making the bed might as well be a 45-minute aerobics workout. baaaaaabysteps...

As always, thank you for your help and concern.

--Bill :=)

[PMRpro Ambassador]

1mg per week, even 2.5mg every second week down to 20mg, even 15mg, would seem acceptable to me. And above 20mg I think a speedier journey is reasonable and probably a good thing since those higher doses ARE more than you will eventually need and a lower dose is advisable. But once you are at 15mg - no compromise, much slower. My personal objection to weekly drops, even when they are smaller ones, is that your body never gets a rest from adjusting to the new dose.

When you are well above the long term dose you are seeking (the lowest dose that gives the same result as the starting dose did) reduction shouldn't be difficult - it is large steps that bring about steroid withdrawal rheumatism symptoms and make you miserable and, as you get to lower doses, run the risk of letting a flare in as you overshoot the destination. And as you already know - letting a flare in just causes misery and trouble.

[SheffieldJane]

That makes sense and you can always modify the plan if your body doesn’t like it.

[DorsetLady PMRGCAuk volunteer]

Hi Bill,

As PMRpro says if you reduce weekly - at whatever dose, you are never sure that your current dose has everything under control, before you embark on the next drop. For some people it can take two weeks for a flare to manifest itself, and by then you have gone past your optimum dose. I would opt for 2mg every two weeks, rather than 1mg every week! Works out the same reduction, but easier on the body!

[Craftnut68]

Hi Bill I've tried 3times to reply to you but I've lost them into the ether somewhere. I was put on 60mg prednisone in Oct 2015 due to an eye stroke and at same time was told I had PMR which I had suspected for 2 years

I stayed on the 60 for 2 months and then started a 5mg reduction every month until I got to 10mg and I stayed on that for another couple of months and in April 2017 I started the dead slow and stop method until I got down to 4mg on 19th November 2017 and I have been on 4mg ever since

I can honestly say I have never felt better if this type of reduction as I still have problems getting dressed at times and I experience a lot of dizzy turns and muscle pains in my neck and shoulders. I experience a lot of pains in my arms and I get a lot of balance probs I'm sorry I have nothing that I can advise you that would be of great help. I do however feel that a massive leap down from 30mg isn't anything I'd like to have down. The best I felt was round about 10mg so much so I've been thinking of asking to go back up I saw a rheumatologist last year who advised a synacthen test to see if my adrenaline glands had started to work again as apparently the large dose of steroids will have stopped them working

I hope you can find some relief along the way but it is a struggle