Reducing Prednisolone

[Horizon12]

I have been taking 10 mg now for a month and have found I am managing quite well on this. I am a little anxious about reducing this dose. Could I possibly stay on this dose or do I need to reduce further?

[SheffieldJane]

The aim is to get to the lowest dose that can manage your symptoms. I have read from PMRPro,I think, that some doctors keep their patients on 10 mgs for a full year. Is your doctor good to talk to about this sort of thing?

Personally, I am hoping to get a bit lower than the 7 mgs I’m on but I have had set backs on and off for months. I would worry less if I was at 5 mgs, just a notional target in my head. I’d love to be free of side effects.

[Horizon12 in reply to SheffieldJane]

Thankyou for your reply. Must make Drs appointment to discuss it

[DorsetLady PMRGCAuk volunteer]

Hi,

As Jane says you are trying to get to the lowest dose that controls your symptoms, no point in being on more Pred than you actually need.

But there’s no need to rush, stay at 10mg for a little longer and then try a small taper, 1mg is recommended, but if you’re worried just try 0.5mg! Plus try a slow tapering plan as below - easier on the body - healthunlocked.com/pmrgcauk...

[Horizon12 in reply to DorsetLady]

Thankyou for your reply. Still very nervous about reducing.

[DorsetLady PMRGCAuk volunteer in reply to Horizon12]

Yes, I can understand that....just do it when you feel it’s right. You’ll soon know when is good, and when is not! Don’t be hassled by doctors- that’s sometimes the most difficult part if they are trying to get you to do it too quickly.

[PMRpro Ambassador]

The Kirwan group in Bristol developed a reduction approach keeping patients at 10mg for a year - and it reduced the incidence of relapses/flares.

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

But you do, at some point, need to try lower. If you try a slow approach to a 0,5mg reduction and it works, it's all good. If it doesn't - go back, wait a month or two and then try again. Don't force anything and don't panic. You will get there, but you have to be patient.

[Horizon12 in reply to PMRpro]

Thankyou for answering my question. So worried of a flair up as couldn't put my socks on or brush my hair. The pain I can't even explain, 1-10 at least a 12.

[PMRpro Ambassador in reply to Horizon12]

When you reduce slowly you usually get plenty of warning - and then it is your fault if you ignore the warnings and try to stick it out. That usually ends in tears.

[Jean56]

My starter dose was 10. Doctor wasn’t convinced my problem was PMR. Fortunately it worked and I was pain free in two days, fantastic. Not sure what he would have done had it not worked. I realise I was fortunate to have that relief on what is a relatively low dose. My problem is I’ve been taking 10 since March 2016. I’ve tried several times to reduce, once managing down to 7 but it returns and back up I go. So I stay on 10 and will try reducing again in the next few weeks. What I have realised is that stress plays a huge part and at the moment my life is very stressful, even at 10 which normally manages the pain and stiffness well isn’t doing all that good a job. Hopefully once my husband has recovered from his knee replacement and our family have stopped panicking and demanding we downsize our home, my stress levels will fall. How they think we can cope with selling and moving at the moment I know not! Strange how they suddenly seem to think we are totally incapable of looking after ourselves and thinking for ourselves. All this was brought on because I was, surprise, surprise tired looking after husband after his return from hospital. He reacted badly to the painkillers and for the first week I got very little sleep. It would have been better had they offered practical help rather than unnecessary advice. I don’t think 62 and 71 are exactly ancient as I pointed out I’m still not of pensionable age! Sorry this has turned into a rant! What I’m trying to say is don’t worry, find the lowest dose yes but don’t panic if you stay at 10 for a while.

[PMRpro Ambassador in reply to Jean56]

Glad I don't have your family!!!! I never quite get the difference between stopping using a couple of rooms for a while and downsizing. It is a hellish experience as I know having done it a few times while fully fit - from a large family home to a smaller family home and then to here via another smaller house. Do they have no concept of what "downsizing" involves? Lots and lots of sorting out, packing and unpacking and probably a load of shopping for different furniture (what you have never fits in a new house) - and at present you sound nicely occupied without! This too shall pass - are they that blind?

It took me over 4 years to get below 1omg reliably. Since then I have been down to below 5mg, back to 15mg and am currently at 9mg - 7mg is OK for the PMR, not for the adrenal function and atrial fibrillation. No idea how we will solve that one!

[Jean56 in reply to PMRpro]

Exactly, I’ve moved house many times over my married life and yes it’s bad enough when you’re fit and healthy. In fairness to my family it is only my stepson and his wife who are being rather strident in their wish that we move. My step daughter is totally opposed to their interference. It may be their concern for us but it came over as over bearing and bullying. We both had enough stress to cope with without this suddenly coming out of the blue. Strangely it’s always been my stepson who has been the gentlest and kindest of people. I think he is finding work difficult, working for yourself not the easiest, pressure is great. Plus we think he has home pressure as well. We must have been the straw that broke the camels back and he went into panic mode. Seemed to think we needed constant care! Just didn’t think it through and wouldn’t listen to anything we had to say. I don’t take kindly to being told to speak when given permission! Hopefully it will sort itself out but could have done without it all. At least now I am able to get a good nights sleep, which is all I needed in the first place. Isn’t life fun......

[PMRpro Ambassador in reply to Jean56]

"I don’t take kindly to being told to speak when given permission!"

Hmm - no, neither would I!

[Horizon12 in reply to PMRpro]

Thankyou for your comments

[Horizon12 in reply to Jean56]

Sounds as if you have had a lot on your plate lately. Hope hubby is ok now, and if you want to rant you go ahead and don't apologise. We all need to blow off steam now and again. Thankyou for your advice.

[Lochy]

I’m at 10 at the moment too and it has been a rocky road getting to here! I too get a bit panicked about trying to reduce from here. I think it’s partly because I feel I’ve failed when a recommended reduction doesn’t work. I see my GP and have to admit I’m bit stuck. Better that then letting a full blown flare in the door though.

I’m going to try 9.5 after few weeks at 10, all being well.

[PMRpro Ambassador in reply to Lochy]

You haven't failed - the reduction was simply a step too far for YOUR PMR. You have YOUR version, not your doctor's version, not my version or your neighbour's version. We are all very very different and what someone recommends doesn't always work - however much we'd like it to.

[Horizon12 in reply to Lochy]

Quite agree with you