Prednisolone reduction

Hi have been looking at the advice on reducing slowly - any advice on how long to maintain a dose before reducing - out of desperation increased to 15mg four days ago and already it has helped so any comments on how soon to look to reducing welcome - thanks - also have 1st appointment with rheumy in June so wondering if should be trying to get down as far as possible !

[Runrig01]

Hi Suzy, what dose were you on before increasing?. When you increase for a flare you should be able to taper back down quickly to the last dose that your pain was controlled at, or 1mg above that. However once you get back there you have to take the taper slowly or it will come back to bite you. It is recommended no more than 1mg a month, and some patients follow a slowly slowly approach taking approx 7 weeks to reduce by 1mg, one of the specialists I see has just reduced my taper to 1/3mg a month. what taper schedule did your GP set you? The other mistake people often make in the early days is thinking they can return to the activity levels before illness because the steroids make you feel back to normal. Unfortunately the Pred is not curing the PMR it just puts water on the fire so to speak, and if you overdo it, the inflammation will build up again, and you will pay the price. Initially look at doing 50% of the activity at most that you were managing before diagnosis.

I'm sure some of the other great experts will be along soon to offer you advice. Good luck

[Hidden in reply to Runrig01]

Hi runrig

I was on 5 mg I increased for short period to 10mg which didn't help ( thinking of initial benefit when first started ) I am now thinking I should have increased less and stated on for longer - to be honest I haven't really had any advice on dosage except to say use pred and object not to be in pain so very DIY I know - as I said to pmr pro I even wonder now if more ra but go says it's all related so hoping I may get more clear instructions when I see specialist - bit worried now about going up to 15 mg although it has definitely helped even over only a few days !!! Sorry to ramble - appreciate your advice

[PMRpro Ambassador]

I suppose it depends on how you look at it - do you want to be in the same pain as at the beginning to prove something to the rheumatologist? However - if you start yoyoing the dose and allowing the inflammation to flare up, many people find it more difficult to reduce again later and some find it tkes more pred and longer to manage the inflammation to start with .

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

is a paper by the Bristol rheumatology group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares. They keep patients at 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year before reducing any further. Some of us think that even that can pose problems - some people simply can't cope with the 2.5mg steps but then succeed in reducing with 1mg steps. I struggled even with 1mg and never got below 9mg until I worked out spreading the reduction over a few weeks made it possible, I'm now down at 4mg and very happy.

You will find the details of my reduction scheme here on this site:

healthunlocked.com/pmrgcauk...

You will see that the reduction is so gradual that you have plenty of time to see if it is OK but I would always counsel staying at any new dose for at least 3 to 4 weeks to make sure it is still enough to manage the inflammation and therefore the symptoms. However slowly you reduce you are likely to get to a point where a further reduction takes you to a point where it isn't enough to stop inflammation building up and the symptoms return. Once that happens and you have a flare you have to go back to a higher dose and start over again. It really is a tortoise and hare trip - and you cannot force a reduction. You need the amount of pred you need - it is as simple as that.

[Hidden in reply to PMRpro]

Thankyou for this - no I don't want to be back to pain when I see the specialist - I wonder really whether it is the original pmr I was told or now more symptoms of ra and whether prednisolone treatment / reduction are the same in both cases - think the more I read the more confused I become ! I will follow slow reduction and hope that I will be clearer following appointment - I think my initial treatment which was 20mg one week 10 mg one week then 5 mg ongoing is making me feel pressured to get down again or that one week at reasonably higher dose is long enough to settle things ... Very wrong impression it seems

[PMRpro Ambassador in reply to Hidden]

That is a taper for flares in, say, RA to get excess inflammation sorted out to allow the normal medication to do its work. PMR is different, it is a chronic underlying illness which isn't being managed by any other drug which causes the symptoms we call PMR, pred is the only management that works. In RA a low dose of pred is often used to manage the morning stiffness - and a form called Lodotra was developed to make management of this morning stiffness aspect better. I imagine a much lower dose will manage that but the reduction would be similar to identify the lowest dose that does the trick - except maybe faster since you don't have the major flare problem that will happen in PMR.

That sort of taper simply doesn't work in PMR - and I've given you sources to read much better alternatives. It makes sense to get all the inflammation under control first, you weren't on a high enough dose to do that. Originally my rheumy did the same - he of course didn't want it to be PMR - and I was great at 15mg for 2 weeks, good at 10mg for 2 weeks and ok-ish at 5mg for 2 weeks. Within 6 hours of missing the first 5mg dose I was worse than before and it took a long time to get it settled again. He wasn't interested but another GP in my practice was. I never saw the rheumy again.

Reducing the way I've shown usually seems to result in patient getting to well under 10mg without flares and discomfort and panics. Most doctors will accept 7.5mg - but there is no point being on 7.5mg and being in pain when 8.5mg has you comfortable. At 7.5mg the doctor may feel you are "safer" in some way but you aren't, there is uncontrolled inflammation in your body causing its own damage and you have all the disadvantages of pred with none of the benefits. Use of any drug is on the basis of a balance of its benefits against its downsides. Used properly pred is a good and effective drug whose long term side-effects are well known, which is more than be said for a lot of the other stuff they try to throw at patients in the UK.

[Hidden in reply to PMRpro]

Thanks for this - did your symptoms have you baffled at all? Why do you think rheumy didn't want it to be pmr that was first diagnosis to me from gp - she says pmr and ra are related so as I say maybe I am too hung up on diagnosis / appropriate treatments - I know she thought that the treatment route for ra was harsh saying to manage preferably on steroids but with no real guidance - so cant decide whether in pleased to have rheumy appt or dreading being put on harsh meds sorry I know I'm going round in circles !!

[PMRpro Ambassador in reply to Hidden]

Huh? That is a new one on me "PMR and RA related" - not in the books I've read. Except they are both autoimmune and both inflammatory. The mechanism is different - if it weren't then DMARDs would also work in PMR and so far they haven't found one that does. One in 6 patients who is diagnosed with PMR later has the dx revised, often to late onset RA - but that is because they are mistaken because the presentation can be very similar not because they are related. That is the idea of trying a week of pred - PMR responds dramatically, often in hours. Other forms of arthritis aren't as clear cut - so then you question the dx.

And its the first dr I've come across who would rather use pred than DMARDs, but DMARDs don't work in PMR. I think she's just waffling on the ground the patient knows less than her.

[Hidden in reply to PMRpro]

Very probably ! So maybe rheumatology appt is a good thing and in the mean time I will heed the advice on reducing prednisolone !

[DorsetLady PMRGCAuk volunteer]

Hi Sue,

Totally agree with others, do try the slow reduction plan. It may seem long winded, but overall it isn't. It seems to fool your body into not realising you are actually reducing. If you feel okay at the end of the last week of the first reduction plan (whether that's 5, 6 or 7 weeks), then you can go straight into the next reduction so it is a continual process. Hope that makes sense.

If you're not 100% happy then you can always stay at the new level until you are ready to go again.

The only thing I would say, if you have something stressful coming up then don't reduce whilst that's going on. I got down to 7mg in Nov last year, and knowing I was going to New Zealand for six weeks stayed on that dose whilst I was out there, and then started the reduction plan again once I was back home. I probably would have been perfectly okay, but why jeopardise things for the sake of six weeks?

One thing you learn with PMR/GCA is patience!!

Hope things work out for you. DL

[Hidden in reply to DorsetLady]

Oh dear DL just did lengthy reply and lost it I think !

Thankyou for that - you seem to be doing well and have a good handle on reducing - can see why you wouldn't jeopardise time in NZ hope you had a great time

I suppose I am wondering if I have increased too far and should try to get down by 1 mg after a week as you say could go back up if I struggle - I realise I ask people the impossible to predict - so apologies but can I just say I sincerely appreciate responses and advice - hope you stay well

[PMRpro Ambassador in reply to Hidden]

1 mg is neither here nor there in the great scheme of things. Once you get into a yo-yo set-up it will get harder to control a flare and that will mean going back to higher doses which are then more difficult to get away from and in the end you have taken far more pred than if you had been patient. You need 15mg for at least a few weeks before starting on the smaller drops to find the lowest effective dose.

[Hidden]

D

[Hidden in reply to Hidden]

Thanks that sounds like good advice from all - I think I feel like maybe I now have more acute but specific inflammation and pain in wrists fingers and. feet - don't really have stiffness - when this first started was mainly excruciating ache / pains in shoulders or legs which responded to the steroids well in those first doses maybe I am too hung up on what the diagnosis is and just, as you all suggest and have the experience of do the maintain for a while then slow reduction

[jinasc]

send and email to [e-mail] subject heading 'reduction plans'.

Both plans will be sent to you so you can use the best one for you.

[Hidden in reply to jinasc]

Thank you very much I will

[Hidden in reply to jinasc]

Aw won't send says address wrong ??

[jinasc]

Oops Sue, sorry should be [e-mail].

I am now going to sit on the naughty step.

[Hidden]

Lol and at a minute a year recommended wonder how long you'll be there !!!!

[Hidden in reply to Hidden]

Ps thanks again