Pred dosage

[SpuddyVM]

Just been diagnosed with PMR. Started on 20mg Pred daily for last 10 days which helping but GP wants me to drop to 15mg at end of 2 weeks. Is it normal to drop dosage this quick? I don’t know if I should ask gp to stick to higher dose for longer. Am scared!

[Whatgrange]

A couple of months ago I opted to go up to 20 for a flare then down to 15 after a week , then 1 a month. I think it is ok to do a big drop when you’ve only been on the high dose for a very short time. I had no bad effects from that drop, but I’m sure PMRpro will be along soon to explain the science. I think I would say don’t be scared.

[DorsetLady PMRGCAuk volunteer]

Hi,

You are right to be slightly concerned - although many doctors do say taper after 2 weeks, and it is okay for some, I think most of us “oldies” on here would suggest staying at initial dose for 4 weeks.

Also a drop from 20mg to 15mg might be overly ambitious- 20-17.5-15 would be better.

Whatgrange’s comment re the quick drop following a flare is a different scenario - and it can be done in that situation - but not when you have recent being diagnosed and are tapering to find the dose you actually need to control symptoms.

Please let your doctor know you concerns - and opt for a slower taper.

[PMRpro Ambassador]

You say "it is helping" - but how much? It is silly to force a patient to reduce that much after 2 weeks if the symptoms are still improving or the blood markers are still raised. You should stay at the starting dose until the markers are down to normal range and preferably stable and the symptoms have improved as much as they are going to. That is your guideline: having achieved a comfort level you then reduce slowly looking for the lowest dose that gives the same result.

A reduction of 5mg after 2 weeks at 15-20mg is what they would do when using a taper to manage a flare in rheumatic disease - the question you need to ask is "and how do we go on from there?" That is how I started, 15mg for 2 weeks, 10mg for 2 weeks, 5mg for 2 weeks and stop. Less than 6 hours after the first dose I felt human and could move without pain for the first time for years - less than 6 hours after missing the first 5mg dose I was in a worse state than before pred. And it became much harder to manage the symptoms after that.

As DL says, you are newly diagnosed and you don't know "your" PMR and your body's reaction to pred yet. Do discuss it with the GP and find out what he intends to do - and try to persuade him to slow down, It isn't a race but the start makes a big difference to the rest of the journey even when it is.

[SpuddyVM in reply to PMRpro]

Thank you so much for your reply. I will speak to gp and ask him to slow down. Especially as not had blood test results back yet since starting on pred. Is all very new to me and lots to get a head around so really appreciate everyone's support and advice.

[piglette]

I had a rheumatologist who wanted me to go from 20mg to 15mg after three weeks, in my case it was a total disaster, particularly as my blood markers were pretty high still.

[SpuddyVM in reply to piglette]

Thanks - I've decided to tell doc I want to stay on 20mg for at least 4 weeks then reduce to 17.5mg as suggested earlier. Am going to take my partner with me for back up - as an ex head teacher she is more assertive than me and usually gets people to do what she wants 😂

[piglette in reply to SpuddyVM]

That sounds sensible. My rheumie got very aggressive if I disagreed with him. I packed him in after six months.

[Theziggy]

Taper plans here steroidtaper.azurewebsites.... - to show your Doctor

[cherrysteps]

I dropped pred dosage from 15mg to 12.5mg within one month and symptoms came back so doctor quickly put me back on 15mg.

[PMRpro Ambassador in reply to cherrysteps]

When the symptoms come back in a day or so it is often not the PMR but your body reacting to the change in dose - unfortunately the symptoms of steroid withdrawal tend to resemble the illness for which you are taking the pred. Some people are very sensitive to changes in dose and that is part of the reason we push the idea of never dropping more than 1mg at a time, even at doses above 10mg. It should never be more than 10% of the current dose anyway.

[cherrysteps in reply to PMRpro]

Thank you for your reply, you are so right, I agree that 1mg is enough. I am still on 15mg and still have the pain in my shoulder from when the dosage was lowered which must be 3 weeks or more ago, I feel I need to take a higher 15mg dosage now, am waiting to go back to the doctor later this week.

[Hidden]

Hi

I was on 20mg for about 5 weeks by which time I had very few symptoms noticeable (slowly decreased over the time period). Doctor suggested dropping to 15 and some symptoms returned but not enough to offset better sleep n wellbeing from less pred. It seems to be working for me but what seems obvious is that everyone seems to have a different curve on this do you need to find your speed of recovery against the dose required to keep you there..

[SpuddyVM in reply to Hidden]

Thanks. I saw GP last night and have agreed to reduce to 15mg for next 4 weeks then reduce by 1mg each month until down to 10mg. Will be monitoring blods etc. Am feeling happier and definitely like the idea of better sleep as struggling with that ay the moment.

[HeronNS in reply to SpuddyVM]

And never taper if you are experiencing symptoms. Slow and steady wins the race and results in a lower lifetime intake of pred than if you have to deal with repeated flares and dose increases to deal with them.

I've just taken six months to taper from 2 to 1 (very hard to taper at this small dose, harder than I ever would have expected). And even with going so very slowly I am of two minds whether the 1 is going to be enough. May be back at 1.5 in a couple of days if things don't improve. But I'm this low because I followed a very slow taper plan and didn't have to deal with serious flares.

Using slow plan I was on 3 mg after one year, having started at 15.