I have just been reading an excellent article in the FAQ section on adrenal function and Prednisolone. Thanks to whoever wrote it.I have been reducing 0.5mg Prednisolone every 10 days and am now taking 4.5mg. Will my adrenals have started to 'wake up' yet ( my GP refused to do a cortisol test). Is a 10 day reduction too fast?
So much to learn.
The way you know your adrenals are working is that you can get through your day without fatigue or the weak wobblies. You won’t have feelings of emptiness and feeling emotional and anxious for no good reason. 0.5mg every 10 days would have floored me because mine weren’t working well and I did reductions over 8-14 weeks when under 5mg. So if you can keep up that pace, you’re doing very well. I say all this without considering your autoimmune activity. If you feel fine, then the GP is likely not to see the need for testing. There is no telling whether your adrenal axis will be able to keep up with your rate of reduction but you will soon know about it if it doesn’t.
One word of caution. What no test or feeling on the everyday, is whether your adrenal glands could cope in an extreme situation or in a sustained period of mental or physical stress. This is why it is said you need to have a medical alert ID and spare Pred in your pocket for a year after stopping.
Thank you for posting to me. No, I don't feel good, haven't done since 6mg but was encouraged to keep going by GP and husband who is worried about the long term effects for me.I am trying to please everyone and getting nowhere fast. No, I don't manage stress at all well 😞
In my view [as probably the person you are referring to re post with information gleaned for medical sources] reducing 0.5mg very 10 days is too fast - whether that be for your PMR or your adrenals. The latter needs more time to be nudged into working, and as stated they are ‘waking up’, but not full functioning as yet. Nor likely to be for some time.
If you haven’t felt good since you were at 6mg… what exactly do you mean.. adrenal related [general fatigue, dizziness,etc] or PMR related [return of some symptoms]… or a combination of both?
As to be honest, it’s you and your PMR that will dictate how you reduce, not your GP nor your husband. Even though he may think he is helping you by encouraging you to reduce, if you feel rubbish whilst doing it too quickly, he isn’t.. 😊
Thank you, yes it is a bit of both, general malaise, fatigue, woozy head also muscle pains etc. I feel 4.5 is too low. I rand the doctors surgery this evening as I felt rough, and was advised to take 5.5 over the weekend and book an appointment early next week
Definitely too low… and with your history I’m not really surprised… not sure whether 5.5mg will be enough. Hope so, but …
In your experience what dose would you advise
I’d try at least 7.5mg for a few days - and then back to 5mg.. hopefully that will be enough.. if not then you may need to try the flare protocol - but hope that won’t be necessary -
healthunlocked.com/pmrgcauk...
Thank you
Here in Australia, our pill sizes are 5 mg and 25 mg. how is one to cut these down to size that you guys have? I have been told to drop at first, 10 mg every 2 weeks "impossible", now 5 mg a fortnight, the Rhumy wants me down to a total of 10 mg in early March and hold, but my body and brain feels run over and fried! I think I will be going back up before anything else!
Started early October at 50 mg morning and 10 mg at night, mid December taper started, and now at 15 mg morning and 10 mg at night, reduced the nighttime one to 5 mg sometimes so I could get some needed sleep.
Do I just go back up on the morning dose, and how much?
Since the taper started every day is bad. Rhumy said the inflammation in your bloods are down, and you should be better, see you in April!!!!
How do I give him what I am experiencing?
Just a quick note, 1 mg Prednisolone is available in Australia.
Thank you…
Thank you,
I am on the Gold Coast.
I will see the Dr and ask "demand" for the 1 mg tablets.
Which is worse the medication or the illness? ATM I am only having one good "average" day in 14 since the start of the taper. What a battle, this site helps with the information.
Seems panadol, codeine or nurofen, don't touch the pain with GCA, what have you noticed?
Seems panadol, codeine or nurofen, don't touch the pain with GCA, what have you noticed?
No they don’t -I was undiagnosed for 18months and tried many different painkillers -not only does Pred work.. it’s saves sight… or in my case preserved one.
Thank you, I was amazed nothing works for this, only time. Still get the headaches and sore temples, like a spear through the left temple behind the eyes at times.
My Rhumy told me I was lucky I was on blood thinners "100mg aspirin" a day, and my local Dr started me on Pred while waiting for that appointment for the Rhumy! Mind you he only gave enough pills for a week! Not enough for a month, now I know the outcome.
Bit concerned you are still getting headaches and sore temples… that shouts not enough Pred to me..
I’m sure many doctors would baulk at the amount of Pred I took initially - but I was diagnosed [eventually] by an ophthalmologist after sight loss in one eye..and they [for obvious reasons] are much more aware of the implications re sight. Once referred back to GP she was very cautious as well [as her misdiagnosed was to blame].
My initial dose was 80mg for 2 weeks until ophthalmologist was happy that second eye had been saved, and then 60mg -8 weeks, followed by 55mg - 2 weeks , 50mg - 3 weeks, 40mg - 2 weeks, 30mg - 3 weeks, 25mg - 4 weeks, 20mg - 5 weeks, 17.5mg - 4 weeks,15mg - 6 weeks.
No headaches after first week or so [but that was as much brain adjusting to monocular sight as the GCA ] - no flares, no additional drugs [TCZ/Actemra not authorised inUK at that time], no significant side effects of Pred
I’m not advocating this approach would work for everyone, but it did for me. Been off Pred since September 2016, with no long term health affects from Pred, which is always doctors excuse. I realise I have been lucky… and I’m sure the hefty dose at the beginning made the overall journey easier… but sure some experts would be rolling their eyes in horror!
that’s a shocking QOL! Yes, it’s very hard to answer that perennial question. But the blindness and other risks must be taken into consideration. Sorry you are having such a hard time of it.
I’m up in Far North Queensland. One Rheumatologist for our whole area.,Nearest second opinion 5 hours drive.
Hope you can easily obtain your 1 mg Pred.
A quick look online states that 1mg, 5mg and 25mg are available in Australia..….so perhaps double check with your prescribing doctor…. Perhaps as you have GCA and on high doses only 5mg and 25mg were considered necessary initially.
If you can get 1mg, then you can mix and match . 5mg can be cut -certainly in halve maybe quarters, so you do have options.
As you only started Pred in Oct I think most of us who have been through the GCA journey would say once you get to 25mg you really need to slow down [at higher doses it is possible to reduce quite quickly always assuming the initial dose really got a grip of the illness].
To be honest, I think your Rheumy is being unrealistic in their ‘wantings’…
My advice would be back to 30mg to get things under control [whether you split dose or not is up to you, but from a personal point of view I’d prefer one dose- think GCA needs that].
Plus tapering 2.5mg a time [cut your 5mg] and preferably 3-4 weeks at a time [2 weeks isn’t enough to know current dose is sufficient to control GCA before you drop down]. I know your Rheumy probable won’t be happy with that… but their way you are going to flare, and inevitably end up taking more Pred rather than less.
The only reason your inflammation is down is because the Pred is doing what it should…doesn’t mean your illness isn’t still there underneath, chugging along…
Thank you, I have spoken to the chemist previously and was told only 5's as your Dr prescribed, now I will ask the Dr and see what I can get?
Tired of all these associated problems, and my health! Used to be able to do and fix anything, now one big brick wall and no ladder!
Now all a learning experience.
More than one way to scale a wall 😳.. just need a longer ladder (ie. Correct dose of Pred!).
Thumb ??
Sounds like your rheumy thinks that blood markers mean your GCA has diminished. He's totally wrong of course!
As PMRpro and DorsetLady keep pointing out on this forum, the Pred you take is reducing the inflammation the GCA causes, so your blood markers return to normal. However, your underlying condition is still just as strong as it was to begin with, and will continue till it burns out, and nothing your consultant can say or do will alter that fact.
Telling you to reduce your Pred so quickly isn't helping anyone, least of all you, and if the fast reduction he's insisting on causes you to have a flare, then it could cause you many problems, including permanent loss of eyesight!!!
So go at a pace that suits you, i.e. only reduce when you feel well, and then only in small steps. DorsetLady has documents she can send you links to that will explain the best way to reduce your Pred over time, without causing damaging flares or total relapses.
how long have you been tapering every 10 days? I started on 15mg exactly a year ago and am at 4.5….
Don't forget that you have PMR, whereas Groggrim and ngchgc both have GCA. So they both will have started on either 50mg or 60mg per day, whereas you, like me, started on 15mg Pred for PMR.
Yes, I actually thought tapering regime was too fast as I have only reduced 10mg in a year!
No, I don't have GCA, I did not say I did. I started on 15mg for suspected PMR. Please get your facts right.
I do apologise. I managed to mix up your post with that of ngchgc, who does have GCA. I'm sorry if I caused any offence. It wasn't my intention to do so. I guess that I do have Pred head after all. 
Not at all, I shouldn't have snapped. Tired and grumpy today, I'm sorry.
Actually Groggrim was THOUGHT to have GCA/PMR but then it was decided she didn't and so didn't need to be on pred at all. Getting OFF pred isn't the same as tapering it to find the right dose for you.
I had a really good consultation with a rheumatologist a couple of weeks ago. I’m on 5 mg and haven’t had much luck reducing down from that so far. She was really encouraging and said that 5mg was a low dose in the great scheme of things and to take my time. She said she’ll do an adrenal function test when I get to 3mg as the readings would be unreliable on higher doses than that. Good luck!
That's a keeper!!
She really is. Her name is Alexis Jones (consultant rheumatologist) and I see her at UCH in London. I highly recommend her!
I started on 30mg prednisolone tabs I’m now down to 8mg and I reduce by 1 mg every 6 weeks, so every 10 days sounds a bit quick but I suppose everyone’s different.
I’m same from 30mg down to 8 mg reduce by 1 mg every 6 weeks.
Adrenal function riddle
Adrenal insufficiency 
Tests for adrenal function
Adrenal function at the lower doses of pred
