Pred reduction

[Worthy10]

Hi, I have been on 12.5mg of pred for 3 weeks. My doctor wants to reduce it to 10mg at the end of June and then a further reduction by 1mg every month after that. What are people’s thoughts and advice please.

[PRL1957]

Hi, Worthy10

The first question is: has your steroid dose cleared your PMR symptoms? I hope so. If it hasn't, don't taper yet... and tell your GP in case your symptoms are something else.

The usual recommendation, based on the experiences of people actually suffering from PMR, is to taper by no more than 10% of the previous dose, over intervals of at least 3 weeks to a month. So, after a month at 12.5 mg/day, you should drop to 11.5 mg/day and stay there for at least 3 weeks.

And don't taper if your PMR symptoms return.

When you get to lower doses (in my case, 7 mg/day) you might find splitting 1 mg tablets and tapering by 0.5 mg/day over 3 weeks or more might be useful.

You will find lots of other peoples' experiences and advice by searching this site for 'tapering'. And the usual message is 'the slower the better'. Too fast a taper can cause an 'undershoot', allow the symptoms to return, and require returning to a higher dose. (Think medical snakes and ladders.)

In my case, I have also found monitoring my temperature to be useful. (It can indicate increasing inflammation, even before a noticable increase in other symptoms.)

[Worthy10 in reply to PRL1957]

Hi, yes my current steroid dose is doing the job. I take 10mg in the morning then the other 2.5mg in the evening. Can you 1mg tablets is my next question?

[DorsetLady PMRGCAuk volunteer in reply to Worthy10]

You can cut any tablet so long as it the plain white uncoated variety -smd many (not matter how tint) do have a guideline.

Pill cutters widely available at decent price.

[DorsetLady PMRGCAuk volunteer]

Your doctor may want to reduce it to 10mg at end of June- but that really depends on how you [and your PMR] is …. Some can manage a 2.5mg drop, but others cannot…it is a recognised taper from the guidelines, but that doesn’t mean it works for everyone.

After that the guidelines say 1mg every 4-8 weeks - depending on disease activity and patients wishes -so it a bit of trial and error sometimes…

My advice is - always take notice of your body, not the date on the calendar- by all means have a plan, but remember it is only a plan -and it can be changed when necessary, it’s not set in stone.

Good luck..

[Worthy10 in reply to DorsetLady]

Thanks, my last reduction from 15-12.5mg seems ok at the moment, so fingers crossed I suppose at the next crossroads 👍

[PMRpro Ambassador]

That taper from 15 to 10mg is pretty standard, as is the 1mg per month from 10mg - but that doesn't mean it works for everyone! ALL guidelines have the codicil that the taper must be adapted for the individual patient in line with signs and symptoms. If there is a return of symptoms, you must stop reducing and regroup. It may just mean slowing the taper down, it may mean waiting a couple of months before trying again.

There is advice and slowed tapering plans in the FAQs, the link to that is at the top of every thread.

[Mayadill]

I came down like a dream from 20 to 12,5, not a care in the world. 10 mg was a bridge too far and I flared magnificently. If your PMR's not ready, that's that and it will tell you in no uncertain terms. So long as your doctor is aware of that, it's just a hiccup. When my PMR was ready - about 15 months later, I'd gone back to 20 mg - I again came down like a dream from 10 mg at 1 mg per month.

[Oh-my]

My initial plan from my GP was the same as yours. The 2.5mg drops turned out to be too big for me. My GP then suggested 1mg drops. That was too much too. On my 4th attempt I have found steady 0.5mg drops work for me. All trial and error. You don’t know really until you try

[Ozziedays]

Hello, I was in Australia when I developed PMR and started on 25mg. After an initial few weeks, my taper plan was 2.5mg every three weeks. My GP and Rheumatologist had advised that from 10mg the reduction would be in 1mg steps, always subject to how I was feeling, blood test results etc.

As things transpired this worked well until I got to 4mg when bloods showed raised ESR and CRP (no symptoms). My dosage was increased back up to 6mg and tapering slowed to 0.5mg every 3 weeks.

I had raised blood markers again (but no symptoms) at 5mg when we increased back up to 7mg with tapering of 0.5mg every 4 weeks, plus the addition of 20mg Methotrexate per week.

I got to zero prednisolone in November 2022 and am currently taking 15mg MTX per week with a plan to come off that early next year. This is the plan of my Australian rheumatologist, I have been back in the UK since January but am still waiting to see an NHS one, however my GP here has been very good and there is a shared care protocol for PMR with the local rheumatology department. So far, I am feeling fine, no problems, bloods all normal.

Pred comes in 25mg, 5mg and 1mg tablets in Australia so I became quite proficient at tablet cutting! When I got to the end of my final 4 weeks at 0.5mg I actually cut down to 0.25mg for a further week just to make the transition to zero less marked.

I hope this may be of interest to you. I was 23 months from start to finish on prednisolone.

[cranberryt]

Many people can get to 10 with 2.5 drops without issue. It’s after that many of us can struggle. Both because 1mg drops can be too much and because the disease hasn’t burnt out yet. Many of us do a slower taper, using 1/2 mg drops once we reach 10. And it can take more than a month at each dose. Just be prepared! There are still the rare few who can follow that 1-3 year guideline and get off. But the vast majority here take longer. 4 years for me and I am working on getting to 1mg from 1.5.