Tapering advice needed

[LeighDelaine]

I was diagnosed with PMR in early March this year after a year of pain and began the Prednisolone regime at 15mg on 10th March. It made a dramatic difference both physically and mentally for the 4 week I was on that dose; no pain, more energy & greater clarity of mind. The tapering timeline I was given by my GP is to drop from 15mg to 12.5mg after 4 weeks then from 12.5 to 10mg after 4 weeks and this is where I am now. It’s my 2nd day of 10mg and I can feel a tightness and an inkling of the old pain and have low energy again. My questions are these: am I tapering too quickly? Or is it that the body takes a few days to adjust to a lower dose? After 4 weeks of 10mg I am due to reduce every 4 weeks by 1mg. Is this the slow slow tapering I have seen referred to here?

This forum is such a godsend. Thank you for all the invaluable advice and the anecdotes. It’s a lonely old business this, but the forum feels like a very supportive community full of very wise (and amusing!) people.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Although the tapering plan given to you by your GP is a very common one, it is not always achievable.....as many have discovered.

I would suggest you go back to 12,5mg, get yourself back to feeling as you did at the beginning, and then reduce by 1mg a time.

If you haven’t already got 1mg tablets, then request them.

Plus you might like to read the following posts - all can be found in the FAQs -

General info -

healthunlocked.com/pmrgcauk...

Withdrawal or flare-

healthunlocked.com/pmrgcauk...

Link to FAQs- healthunlocked.com/pmrgcauk...

[LeighDelaine in reply to DorsetLady]

Thank you for your advice and the links. I think you’re right & I do need to go back up to 12.5mg. I can’t bear the thought of sliding backwards so soon after getting relief and feeling more hopeful.

[DorsetLady PMRGCAuk volunteer in reply to LeighDelaine]

I know it’s disheartening, but catch it quick and it won’t become a drama...leave it and you’ll feel worse!

[Kendrew]

Hi there. Others will be along to fully advise you regarding the tapering, but I would just like to say that I've been 2yrs on pred and I had the same tapering regime as you down to 10mg. I know from this forum that there is no 'one size fits all' and each of us will have our own individual experience and needs where steroid dose is involved. At 10mg, the recommendation is to not reduce by more than 10% of previous dose at each taper and the slow tapers are very slow....... (eg. DSNS taper- Dead Slow Nearly Stop) ......others will provide link. (Sorry...my phone acting up and refusing to do it!)It isn't always a smooth journey down the tapering schedule and tweaks will probably be inevitable at some point, but as you've discovered, there's lots of trustworthy and reliable knowledge and advice to be found here. Hope all goes well.

[LeighDelaine in reply to Kendrew]

Thank you for this. Really helpful.

[Theziggy]

A lot of taper plans (Dorset Lady's plan is there too) can be found at steroidtaper.azurewebsites....

[LeighDelaine in reply to Theziggy]

Thank you!

[PMRpro Ambassador]

Some people manage that speed of taper, some don't. Often doctors allow patients to stick at 15mg for 6 weeks and 12.5mg for 6 weeks and that makes it easier because the PMR has also faded a bit. This

rcpe.ac.uk/journal/issue/jo...

is a taper developed in Bristol some years ago - Dr Quick who wrote it is now consultant at Luton and still uses it. They found it reduced the rate of flares from 3 in 5 to 1 in 5 - and I'm pretty sure it is because that year at 10mg covers a lot of the period in the first 18 months when flares are common.

Another basic rule in tapering is that the step down should not be more than 10% of the current dose - at 15mg that was already only 1.5mg rather than 2.5mg, now it is even less.

Otherwise, DL has said everything i'd say.

[LeighDelaine in reply to PMRpro]

Thank you for the comments and the link. Will print off the paper and go through it before speaking to my GP.

[TheMoaningViolet]

Hi LeighDelaine, I did that same taper, and while 15mg to 12.5mg was hard, 12mg to 10mg for some reason wasn't. DL wrote a helpful post on recognising flares and you may need to give it a few more days before you can be sure of what's going on. Good luck. Vx

[LeighDelaine in reply to TheMoaningViolet]

Thank you for responding. Maybe I should have stuck it out a little longer at 10mg but I felt as though I was sliding backwards and had a panic. I had a phone consultation with a GP yesterday and he felt I was tapering too quickly and suggested 3 more weeks at 12.5 before going to 10mg for 6 weeks then down by 1mg for 6 weeks each time. So back on the 12.5 for better or worse! Hope you’re still doing well with the tapering.

[TheMoaningViolet in reply to LeighDelaine]

That also sounds sensible. In the end only we know how we feel and what works for us. I am doing fine, currently tapering to 3.5mg, but slowly so that I don't notice it. Good luck. Vx

[LeighDelaine in reply to TheMoaningViolet]

Thank you! You too.

[PMRpro Ambassador in reply to LeighDelaine]

Sounds a sensible sort of chap. You aren't slipping backwards - but you WILL jump backwards if you try to force a reduction. If the dose is too low it allows the inflammation to build up again and you will be back where you were at the start. You aren't reducing relentlessly to zero to get off pred altogether - you are tapering, also called titrating, to find the lowest effective dose for YOU. Not the same thing at all. PMR is a chronic illness, the pred has cured nothing, it is managing the inflammation so you have a better quality of life in the meantime. Half of patients take up to just under 6 years to get off pred - 1 in 5 gets off pred in a year, Half are really long term - this isn't very likely to be a short journey, the odds are against that.

[LeighDelaine in reply to PMRpro]

This is alarming and reassuring in equal measure! Your knowledge and advice are so helpful. Thank you 😊

[PMRpro Ambassador in reply to LeighDelaine]

Here we don't subscribe to the "it'll be over in 2 years" fiction. We know that from bitter experience, not text books. It might be for 1 in 3 but there is no way of knowing if you are one of them. For most of us it is longer.

[AyJayBass]

You say it is only the second day on 10mg. I would stick it out for another day or two to see if things settle down before deciding to go back up to 12.5mg. My experience is that after a dose reduction it does take a few days to get used to the new dose. But, as we keep on reminding ourselves, everyone is different! I was diagnosed in early March. My GP told me to start at 15mg for a week then a week on 12.5mg then 10mg for 4 weeks which I now know was a pretty radical schedule but I managed it OK. As of this week I am now on 8mg.

[LeighDelaine in reply to AyJayBass]

That’s brilliant! Very different tapering process to any others I’ve heard about but it’s working for you and that’s the only thing that matters. As I said above, I was feeling so rubbish on 10mg I had a bit of a panic. Maybe I should have stuck it out though. Back at 12.5mg for the next 3 weeks and when I go down to 10 will be more mindful that my body may well take time to adjust. Thanks for getting back to me and good luck with it all.

[DorsetLady PMRGCAuk volunteer in reply to LeighDelaine]

Perhaps you should be considering 1mg reductions.....as said many times over the years, we are all different, so don’t be seduced into copying someone else’s fast taper.

[LeighDelaine in reply to DorsetLady]

Do you mean tapering by 1mg from 12.5 instead of jumping down to 10?

[DorsetLady PMRGCAuk volunteer in reply to LeighDelaine]

Yes, if you felt rubbish at 10mg.

[LeighDelaine in reply to DorsetLady]

Will definitely consider this. It makes sense. Thank you.

[PMRpro Ambassador in reply to LeighDelaine]

AyJayBass is a man - and men frequently have very different experiences of PMR and tapering. Plus, I started on 15mg, had a miracle in 6 hours, tapered to 10mg after 2 weeks, and 5mg after another 2 weeks. I was fine. Until I missed the first 5mg tablet - after 6 hours I was worse than pre-pred. This is a long haul job, even for the 1 in 5 who get off pred in a year. Get into a yoyo pattern with dose and it gets harder.

[Theziggy in reply to PMRpro]

I never knew of the differences between men and women tapering and experiences of PMR. Where can I find out more about this?

[PMRpro Ambassador in reply to Theziggy]

There isn't really a lot - mainly anecdotal. Far fewer men develop PMR, that is documented and the ratio is about 2:1. But even rheumatologists acknowledge that their male patients seem to have a very different experience from women. There are exceptions of course but they seem to have shorter journeys and often can taper more easily. As is very common, their symptoms seem different in some way and they are often able to do far more in the way of exercise though rarely at the level they were at pre-PMR. That may be because of the greater muscle bulk most men have compared to women - because often women who did relatively high level exercise pre-PMR are able to continue with more. But no-one knows.