what is normal when tapering?

[Corriescot]

I have had PMR for 3 years. Started at 25mg and was down to 6.25mg. I only get 5mg tablets so that is a bit challenging but I do manage to break into rough quarters which is 1.25mg.

I have just started to reduce to 6.25 for 3 days and 5 for 1 day. Which would equate to a reduction of one third of mg over a month.

I am getting niggling aches, not pain, sort of stiff neck and a bit creaky walking when I start. It eases a bit during the day.

Is this because I still need more prednisone or is it my body adjusting. How do you know when your adrenals start working again. If I am taking 5mg and my body needs 6mg would the adrenals supply the needed 1mg.

Not asking for medical advice, just anyone else's experience.

[DorsetLady PMRGCAuk volunteer]

hi,

Couple of links to look at - one on adrenals - one on a slower taper that might make things a bit easier-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Yes your adrenals do take up the slack as you reduce the Pred, but it’s doesn’t always work as simply or easily as that suggests … and if you can reduce as slowly as possible that helps them too[not easy when you only have 5mg tablets, but the ultra slow taper in link might help].

But just be aware the niggles you discuss do not escalate and cause a flare…so maybe return to previous dose and see if they go… then stay there a bit longer before you try tapering again.

[Corriescot in reply to DorsetLady]

Thank you, useful information

[PMRpro Ambassador]

"If I am taking 5mg and my body needs 6mg would the adrenals supply the needed 1mg."

That isn't very likely at the dose you are taking most of the time. It requires sustained lower doses of pred for the set-up to register more is required. The body isn't a machine so rather more variable and unreliable.

Are the symptoms you complain of every day or just the 5mg day?

[Corriescot in reply to PMRpro]

Every day

[PMRpro Ambassador in reply to Corriescot]

That could mean the 6.25 was barely containing the inflammation - and the drop of 1,25mg over 4 days has taken you to too low. Stick at the dose you are on and see if it improves. If it doesn't - back up,

[Corriescot in reply to PMRpro]

Thanks, I will give it a bit longer, I was hoping 3 years was long enough to try getting lower.

[PMRpro Ambassador in reply to Corriescot]

Don't we all - but 4 to 5 years is a common total duration. A lot can happen in 18 months.

[Corriescot in reply to PMRpro]

I am pretty good when the dose is ok and few side effects, so maybe I shouldn't push it. I was concerned I was being lazy.

[PMRpro Ambassador in reply to Corriescot]

Lazy? Sounds more like normal to me!

[autumnlass in reply to PMRpro]

🥲 Encouraging post Pro thank you!

[Corriescot in reply to PMRpro]

I think you were right, the pain got pretty bad in the night so this morning I have taken an extra dose and will go back to 6.25mg for at least another month. This is what my rheumatologist would normally recommend in this instance if I could speak to him. Thanks for your advice.

[PMRpro Ambassador in reply to Corriescot]

There does come a point where even another month is not long enough!

[Corriescot in reply to PMRpro]

I will be aware this time