Confused about how to reduce prednisolone

[Chrismag]

I was diagnosed with PMR and GCA in May this year and put on 50 mg prednisolone with miraculous results and a feeling of euphoria! CRP level was 90 and plasma viscosity 1.84. Then tried to reduce as the Rheumatologist recommended by 5 mg a week, but symptoms returned, so went back up to the previous dose a few times ( as Rheumatologist recommended), not being sure whether to just try and cope with the pain. I only saw the rheumatologist once and he was not very communicative. I have been extremely depressed, and 'brain dead' for the past few weeks. I am taking antidepressants.My GP recommended staying on 25 mg pred for a month then reduce to 20 for a month. I saw a different Rheumatologist this week who was much more communicative and recommended that I reduce by 5 mg every 2 weeks until I get to 10mg and then by 1mg per month. She also said that the low mood could well be due to the steroids, and that when I reduce the dose I am likely to feel really awful for a couple of days. If this goes on longer, then I should have a blood test for inflammatory markers ( which are currently at normal levels) and see my GP to raise the dose if the markers are high. From reading and this forum it sounds like a much slower reduction is better, but the rheumatologist was keen for me to reduce quickly due to the side effects form prednisolone. I guess I should follow her advice, but feel anxious about this. My GP doesn't really seem to be very knowledgeable about PMR/GCA though he is very supportive, and my next appointment with the rheumatologist is due in 6 months time. Any comments?

[PMRpro Ambassador]

I've just suggested another doctor is in cloud cuckoo land - obviously flavour of the day! Whatever the side effects of pred they are very rarely as bad as the potential side effect of GCA: permanent loss of vision!

This post

healthunlocked.com/pmrgcauk...

has a slow reduction approach many patients on the forums have used successfully - at lower doses. You can usually get away with 5mg step-downs at the higher doses - but not at 5mg per WEEK, 5mg per MONTH is more like it with GCA. You can do 5mg per week with most other things you use pred for, such as a flare in RA or lupus, you do NOT go that fast with GCA, and top experts would tell them that too. But the use of the slow approach shown here is a way to avoid the "feeling awful" at every drop. It does work at the lower doses below 25mg, less sure at higher doses. But NO reduction should be more than 10% of the current dose - at 25mg/day that is already as little as 2.5mg.

This paper

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

was presented to GPs to help them in managing their PMR patients and also includes a bit about reductions for GCA. Your GP may find it helpful.

This top group from Bristol would have started you on 40-60mg until your symptoms had all subsided and your CRP was much lower, I presume almost down to normal, and then reduced you to 20mg in 10mg steps every month, stopping and going back to the previous dose if you had a return of symptoms and monitoring your bloods. A return of symptoms usually means that the GCA is still active and you need more pred to manage it - not continue to reduce willy-nilly whatever happens. That will just result in major flare and having to go back to a far higher dose - and ending up taking MORE pred not less in the long run. Achieving a slow but steady reduction in dose is the best way to avoid flares and getting into a yoyo pattern with your dose which just leads to further difficulty reducing.

If I were you, I would take this paper to your GP and discuss with them the possibility of using it as a guide. But first you need to have your current symptoms under control. And if you get any more "advice" of that sort from a rheumatologist who should know better - is there any chance of finding another with a more realistic and practical outlook? Where are you?

Low mood may well be due to pred, but it can equally be due to the disease and all it entails. If you are really depressed then it is worth discussing either counselling - to help face up to the lifestyle-changing period you are going through - or even antidepressants.

[DorsetLady PMRGCAuk volunteer]

Hi Chrismag,

As you say, slower reduction is much easier - on you and your body, trouble is Rheumies realise you have to start on high doses if GCA diagnosed, and then want you off the PRED ASAP. Sorry, but unfortunately it doesn't often work like that.

In my case, from 60mg down to 25mg I reduced 5mg a MONTH, not a week!

From then on, in 2.5mg drops, again monthly, until I reached 12.5mg. Then in 1mg drops to 7mg, after that in 0.5mg drops.

Unfortunately, we all get side effects from Pred, some worse than others, and certainly feeling depressed, which after the initial euphoria on high doses can be very debilitating. If you feel the depression is getting out of hand, then please speak to your doctor about it.

However, we all find that the lower you get on Pred, the less the symptoms, but it is a matter ensuring you are on the right dose at all times.

If you do an overnight drop from one dose to the next, you are likely to get steroid withdrawal symptoms for a few days - which can be aches and pains, or feeling low, all sorts really! Can I suggest you try staggering the drop over a number of weeks, not necessarily the DSNS plan, but certainly one that is a bit easier for your body to tolerate.

The reasons we recommend a slower reduction plan are two fold - it's easier on the body, and you're less likely to have a flare. If you go too fast, sometimes you drop below the optimum level you need without realising it.

In response to your last Rheumy advice, personally I would drop 5mg every month. However, you could try 2.5mg fortnightly to start with, see how it goes - if no problem then try 5mg. The trouble with fortnightly drops, I always wonder if you might miss a flare? Maybe it's me being being too cautious, sure others will have their opinions.

Whatever you decide to do, good luck.

[DevonMichael]

My own experience was GCA in June on 40mg and the rheumatologist gave me a timetable plan going down 10mg each month for first two months and then a 2.5mg reduction each month. (Currently on 17.5 and go to 15mg mid October). The good news is that reductions have also reduced my irritability (which went through the roof on 40mg!) The bad news is the excessive energy levels that I had have also dropped. My timetable runs until the end of December but I am scheduled to see the rheumatologist in a few weeks for a review and to seek next steps. I am also awaiting bone density scan results to discover impact of steroids.