Prednisone Reduction

[Robin0449]

My labs came back good. My Rhematologist wants to reduce my Prednisone from 20 mg to 15 mg . I have been on Prednisone (20 Mg) for 5 weeks. I worry about having a flare. When I started taking Prednisone, she had me on 15 mg, for about a week...we had to increase to 20 mg. because my symptoms were not getting any better. The 20 mg dosage worked wonders, and I don't want to go backwards with my progress.

[DorsetLady PMRGCAuk volunteer]

Hi Robin,

Can well understand your concern. Although 15mg is a recognised starting dose for PMR, it obviously wasn’t enough for you, hence the increase to 20mg.

Your labs should be good, that just shows the Pred is working on the inflammation - at 20mg - doesn’t mean it’s going to work to the same degree at 15mg.

Usual taper would be 20mg-17.5mg-15mg, but some people find that difficult. Recommended taper is not more than 10% of current dose, so even the 2.5mg is slightly above that - 5mg is 25% - much too much!

Can you speak to Rheumy and say you would prefer to try 2.5mg as you are concerned 5mg will be too much. You’ve got things under control at the moment, it would be a shame to spoil things so soon into your tapering journey.

[Robin0449 in reply to DorsetLady]

Sounds like good advice. I will talk to her. THANKS!!!!

[kulina in reply to DorsetLady]

I agree with 20mg-17.5mg-15mg. That's what my doctor did and I had no problems. It was hard to go lower than 8 mg. but I'm working on it.

[PMRpro Ambassador]

Of course your labs are good - you are on enough pred to manage the inflammation. The expert guidelines are that a reduction in a taper should not be more than 10% of the current dose. I would stick out for 17.5mg as a first step. Here on the forums we tend to emphasise a much slower reduciton plan than most doctors want to use. PMR is not like other disorders where pred is used. But people who use one of the various slow tapers we suggest seem to do very well - and rarely have flares.

[Robin0449 in reply to PMRpro]

Thank you for the advice! It is so comforting to hear "words of wisdom" from those who know this disorder so well.

[jinasc]

Robin,

Dorset Lady and PMRpro have said it all.

You were started on 15mg and then given 20mg as 15mg was not enough.

This is an extract from the BSR Guidelines for Diagnosis and Treatment of PMR.

Most studies agree that PMR requires 1–3 years of steroid treatment [17]. Hence, the minimum effective dose of corticosteroids should be used and alternative causes of

persistent pain should be sought.

High initial dosing and rapid tapering has been shown to be associated with longer duration of therapy [18].

Therefore no more than 10% at a time and slowly.

There are tapering plans on this site.

[Robin0449 in reply to jinasc]

Thank you so much for the advice!

[SheffieldJane]

I would reduce very slowly then, if your symptoms are quite settled. Perhaps just 1 mg a month until you get to 15 mgs.

[Robin0449 in reply to SheffieldJane]

Thank you for the advice!

[Rimmy in reply to SheffieldJane]

I agree with this quite slow approach SJ - it makes sense given the relative duration of this illness.

[PMRpro Ambassador in reply to Rimmy]

There is a paper that actually says that "reductions greater than 1mg per month are associated with higher rates of relapse"...

[SheffieldJane]

I think your own instincts are as valuable as advice.

[Telian]

It's already been said Robin and some solid advice given. I've been where you are, comfortable on a dose and had to reduce - but did take the dead slow nearly stop approach and have done ever since as I suffer unpleasant withdrawals, which do subside after a few days. Sounds like the way forward for you - listen to your body and don't be rushed by anyone.

Good luck

[Robin0449 in reply to Telian]

Good advice....THANKS!

[lcove]

I've been on prednisone for over two years now and I'd love to get back down to 15 mg. Maybe reduce slower. I've been going down 2.5 mg per week or two. Maybe suggest that to the doctor. I find that change doesn't affect me as much.

[PMRpro Ambassador in reply to lcove]

That isn't slow by most people's standards! It might work at higher doses - most people would find it too fast once they were down to about 25mg.

[strathearn]

Dear Robin 0449

Not sure when you were diagnosed but tapering from 20mg to 15mg seems too much. I was diagnosed with GCA in Oct 2015 and then PMR in early 2017. During this period I've been as high as 40mg and twice as low as 7mg (in really poor shape at this level). Adhering to rheumy and GP advice meant my pred dose was going up and down like a yo-yo.

When I discovered this fantastic forum late in 2017, I decided it was time to take a much bigger say in how I taper. In Dec 2017 I was on 10mg and feeling hellish. I talked to my rheumy and suggested I go up to 20mg and then try a slow taper. She agreed to going up to 20mg but then wanted me to follow the 17.5/15/12.5/10 taper. I mentioned that I'd been on this path before and that it didn't work. She kept on about the serious side affects of steroids (I had sent her a copy of the study by Dr Matterson but she this was only one report).

Anyway, after all the ups and downs I've experienced, I decided to do a slow taper. I reduce 0.5mg every 2 weeks and so far have managed to control things (I have to watch I don't do too much and rest if fatigue sets in). I'm currently on 14mg and will try to stick to this taper for the next 4 months. If I achieve this target I may even reduce more slowly.

As many of the contributors say on this forum, control of GCA/PMR should not be seen as a race to get off steroids. The average time is around 6 years so, trying to reduce dosage too quickly, does not make sense. You've already seen how 15mg was not enough and had to go up to 20mg. So, why race to get down in 2 months with 2.5mg tapers - why not take 5 months to reach the same level and hopefully feel OK!!

I wish you all the best, I don't know what age you are but I'm 82 and quality of life is the most important thing to me at the moment. I'm not going to go through the pain and suffering I experience before when I reduced too quickly and tried to "brave" it out!!

slowly, slowly Robin

[Rimmy in reply to strathearn]

I think you are absolutely right strathearn - I have also read about the difficulties many people have had tapering - here on this forum and elsewhere and I think this is surely now a 'no brainer' - that is that tapering in big jumps and/or too rapidly when you are still in the midst of PMR/GCA is not a very good idea. There seems to be some strange mentality - egged on by misinformed doctors that the tapering itself 'means' these diseases are abating at the same rate !? Of course we all also feel the frustrations of having to take a drug that can have unpleasant side effects - but many of these are temporary and/or manageable and after all it is more often than not allowing us that 'quality of life' you refer to - which IS after all why we are taking Pred in the first place - that and obviously the prevention of more serious possible consequences.

Clearly also the expected duration of PMR and/or GCA is much longer on average than the medical profession often seems to understand - despite the conclusions in academic research papers. I am not a good mathematician but even I can figure out that tapering in big jumps or too rapidly will probably inevitably mean a need to 'go back up' when after a year or two or three or four - I am still NOT completely well. So far I have made that mistake once or twice and needed to slow my tapering down and take a few extra mgs again and sit on them a lot longer. I now won't taper any faster than 1mg a month - I think it is pointless and I recognise that even this may have to be reduced further down the track.

I also agree with SJ's advice to 'trust your own instincts' - ie. - we KNOW when we are not taking enough Pred because of HOW WE FEEL despite adhering to ANY tapering schedules. Finding a 'good' doctor or specialist who recognises these 'realities' and our individual experiences is vital therefore - as many of us here have discovered.

Rimmy

[Robin0449]

Thank you for the helpful advice. I, like you, am so thankful I stumbled upon this wonderful forum. It is so comforting to be in communication with those who share my plight. I am 69, and feel as if I have a new lease on life. The past two or three years, pre-diagnosis, were simply horrible. I thought my pain and fatigue were something I had to live with...part of getting older. Now that I know I can feel like a normal person again, I will not go back there again.

[Hidden]

Hi Robin

My Rheumatologist recently recommended I went down from 15 to 10mgs. He said to go the hospital if I had a flare up and get a blood test and go back to 15. I decided I better do as advised for once! Much to my surprise I am on my 5th day and am coping ok. I may come down with a bang. The Rheummy sees me again in about 5 weeks. (I wasnt hugely impressed with the Rheummy; in a half hour appointment he never actually asked me how I felt at the moment!!)

Good luck

Bridget

[PMRpro Ambassador in reply to Hidden]

I hope it works for you, it will if the dose you need at present is under 10mg - but 5 days is early. You obviously have no steroid withdrawal problems which is a good start.

[Hidden in reply to PMRpro]

How long might it take before I see what the effect of dropping 5 mg might be, do you think? And what would you anticipate would be withdrawal problems.

It wouldnt be the way I would do it, but difficult when the medics recommend. I suppose I want to say to him, ‘well I’ve tried your way so now we will do it mine.’

Bridget

[PMRpro Ambassador in reply to Hidden]

How long is a piece of string? It depends on how much gap there was to "your" dose beforehand. If you were already near the borderline it might only take a week or two. If you need 10.5 and are now on 10 it could take a lot longer for the leftover inflammation to drip drip into the bucket and overflow when it is full.

if you are lucky it will work and you will be able to get lower. Many doctors seem to believe that flares are inevitable - they aren't and people on here prove it day after day. A basic problem is being unable to tell the difference between steroid withdrawal and a real flare. They are so similar you can't know which is which unless you are lucky: steroid withdrawal appears immediately you reduce and then improves over the following weeks. A flare takes a bit of time and then steadily gets worse. But there is no need to go through weeks of feeling rubbish because you think it is one and it is really the other. Go slowly and it doesn't happen.

[Hidden in reply to PMRpro]

Many thanks

[daworm]

In my experience, starting at 15 going up to 20, then tapering down, the 20 to 15 drop was too much, I had to go slower...18,17...etc..