Prednisolone taper.: After diagnosis PMR and nearly... - PMRGCAuk

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Prednisolone taper.

jaycee444 profile image
18 Replies

After diagnosis PMR and nearly 3 weeks of Prednisolone 15 mg ( which has worked well - only really getting pain first thing and that is not enough to stop me moving freely) I am due to return to my GP later this week and I know she wants to start reducing my Pred. Is a slow reduction still advisable even at an early stage? I want to go armed with as much information as possible as Im sure she will listen.

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18 Replies
caroli123 profile image
caroli123

I would be interested in the answers to this. I've only been on Pred a week but the pain has totally gone & as I want to taper as soon as poss due to possible pred side effects.

in reply tocaroli123

At least a month at 15mg. Going slowly is much better. If you start up and downing, you dont know which dose eased symptoms and you ultimately end up taking more pred in the long run. Dr will expect 1mg month but i think as you go down then you just have to go with the symptoms. Some drops are ok. You get steroid withdrawal for a few days at first but then the drop sticks and if after 4 weeks you have the same control if pain you have NOW, then you can drop again. But no more than 10% is the current thinking. Which side effects are you worried about?

caroli123 profile image
caroli123 in reply to

Moon face, thin skin, high blood pressure, triggering diabetes, thinning bones.

in reply tocaroli123

Moon face i got, but disappeared by 8mgs downwards.

Thin.skin - hands but controllable with good double base cream.

High Bp - some do some dont. Treatable until you stop pred,

steroid induced diabetes does happen but can be prevented and controlled by low carb diet.

Thinning bones could happen to anyone. At.least on steroid you get a dexa scan that give you a baseline as early as possible. Take adcal unless more treatment needed.

PMRpro profile image
PMRproAmbassador in reply tocaroli123

I didn't develop a moon face, just chubbier, my skin is fine (and I don;t use any skin products at all, just NO soap), my BP is raised because of something due to the a/i part of PMR and well controlled with medication including the pred. After 9 years on pred I have no sign of diabetes and although I gained weight I lost it all by keeping carbs low, and my bone density had not changed in over 7 years of pred. None of them are inevitable - and can be managed well anyway when you know how

Marilyn1959 profile image
Marilyn1959

Hi Jaycee444. Everyone is different and you won't know how you will respond till you try. However it seems many Rheumies try to get a drop from 15mgs to 10mgs in one hit initial taper. Mine wanted me to do alternate day dosing. This didn't work for me so I did every day taper to 12.5mgs, then to 10mgs. Same result, different method.

The general rule for tapering is no more than 10% of the current dose.

Below 10mgs advise 0.5mgs decrease at a time.

The main thing is for GP / Rheumy to go by your symptoms rather than try to follow a 'text book' taper or indeed blood results. Your blood results should go down if pred is doing it's job at controlling the inflammation. However pred does not cure the PMR. Therefore if you go below the amount of pred needed to control the inflammation the PMR symptoms return.

Your body will guide you as you work through your PMR journey.

Mary63 profile image
Mary63

The perceived wisdom is never to drop the dose by more than 10%. So from 15mg go to 13.5mg. Some people are ok dropping from 15mg to 12.5mg. As the doses get lower it is even more important to only have small drops, especially below 10mg. Also stay at least one month at each new dose. Dorset Lady will be along later with suggestions for a more gradual slow taper. If you drop down suddenly from previous dose to next dose you can get withdrawal pain which is not dissimilar to PMR pain. This goes in a few days whereas pain from a flare tends to come on a few days into a dose change.

Although most people want at first to drop down the doses quickly because of side effects...we all think like that initially. But the important thing is not to go too fast otherwise you overshoot the dose which deals with inflammation. Overshoot that dose, pain returns, and you are into a flare. Then you need to increase the dose to deal with it. That way you will probably end up taking more prednisolone than you do if you take it slow and steady. Have you read Kate Gilbert's very informative bookon PMR and GCA?

jaycee444 profile image
jaycee444

I am more interested in getting it right than I am to get down as quickly as possible. My inflammatory markers were not raised so my GP went with symptoms and rapid result from Prednisolone. I take it first thing in the morning and am pretty much ok after two or three hours up until the 3 or 4 in the morning when I can feel the pain and some stiffness creeping back in. I will speak to my GP and hopefully she will agree to me doing it very gradually. I dont want to end up on a yo-yo with the Pred. Thank you all for your help.

in reply tojaycee444

Do you take the pred at 3am when it starts? You could split the dose. 5mg at night 10mg in the am.

PMRpro profile image
PMRproAmbassador in reply tojaycee444

I'd also wonder if splitting the dose might help your mornings.

I stayed at 15mg for a month and dr said to start reducing. It was my pre forum days so i obdiently reduced by 1mg for 2 months, them 0.5mg thereafter despite feeling rubbish. By 8mg my markers were just over twice what they were at diagnosis. If i were to start again i would be staying at 15mg for 2 months then dropping by 0.5mg every 6 to 8 weeks and if i got more pain i would be back up. It may be that i am "atypical" as rheumy said, i just think my reduction was too fast.

PMRpro profile image
PMRproAmbassador

Yes - the taper is not to get off pred, it is to find the right dose for you NOW - and in the early days of PMR it may still be well above 10mg.

rcpe.ac.uk/sites/default/fi...

is a paper written by a top rheumy group to assist GPs in managing PMR themselves. The taper details are in a table on p344 and you will see they recommend 6 weeks at 15mg followed by 6 weeks at 12.5mg. They found their approach reduced the flare rate from 3 in 5 to 1 in 5 - and most likely because they don't rush to reduce.

This is a link to my version of a slowed down taper:

healthunlocked.com/pmrgcauk...

which will work to make even bigger steps easier to negotiate. It is in use in a clinical study in the north of England and patients have reported that it works better for them than the approaches their doctors had suggested previously. All is explained in the text.

jaycee444 profile image
jaycee444 in reply toPMRpro

I guess I could try splitting the dose. I usually get up at 5am and take my pred with thick greek yoghurt as I have seen recommended by some on the website. I would otherwise suffer with gastric problems and having tried the coated version have found that they take so long to kick in and the effects didnt seem to last so long so have reverted back to uncoated and the yoghurt. When you say split the dose at what time do you suggest I take the evening dose bearing in mind that I would need yoghurt with it again? Taking a dose at 5am is no problem as I am an early riser and it means that I can at least make the most of my day even though I feel exhausted at times. I am hoping that this too will improve as I would so like to feel my old active self.

PMRpro profile image
PMRproAmbassador in reply tojaycee444

How long does the enteric coated take to work? I would try taking some of the dose as e/c before bed - so it will be released and starting to work before you get up. And the rest of the dose as ordinary pred at a time that means the effect is maintained for the rest of the 24 hours.

OutdoorsyGal profile image
OutdoorsyGal

My doc started me on 15 for 3 weeks, then 10 for a month, then dropping 1 mg per month.

I had no trouble with the initial big drop, and luckily, was able to take the rest of the taper in stride, too. 11 month total, now entering 5th month pred free. Getting better all the time, except when I overdo it gardening or biking (hurts my wrists).

Afternoon naps are now part of my routine. Never was a napper previously.

Hope you do great with your treatment.

jaycee444 profile image
jaycee444 in reply toOutdoorsyGal

Thanks for your reply. I have a feeling that my GP will reduce me from 15 to 10mg although I will ask if I can taper more slowly. I was a 5/6 mile a day walker and this has hit me hard. The Prednisolone has helped greatly with the pain but the fatigue is sometimes overwhelming. As a widow and having to cope alone I am finding even housework an effort at times. I am getting used to looking forward to an after lunch nap...... never thought that would happen to me but needs must and if I tried to resist a nap Im sure I would struggle.

PMRpro profile image
PMRproAmbassador in reply tojaycee444

It is all about pacing:

healthunlocked.com/pmrgcauk......

OutdoorsyGal profile image
OutdoorsyGal

I don’t think the 15 to 10 drop is one that gives most people trouble, but if you can get 2.5 mg tablets you could do it in stages: 15, 12.5, 10. One recommendation is to drop 10% with each taper. From 10 to 9 is 10%. Below that, some people use 1/2mg drops, using a pill cutter on 1mg tabs. 1dropped 1 per month and was still pain free at end of taper. A few weeks later I became aware of new pains, sore wrists, etc. Not PMR since it responds to NSAIDS.

Good luck!

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