I was diagnosed with GCA in March 2019 confirmed by biopsy. I was prescribed 40mg Prednisolone daily with no advice on how long to maintain this dosage and no offer of any follow up appointment. After 6 months I realised myself that 40mg should not be taken indefinately so I consulted a rheumatologist and was given tests and good advice re gradual tapering. Owing to covid my last rheumy appointment was by telephone (August 2020) and was advised to persevere with tapering although I explained that any attempt at getting below 5mg resulted in severe pain and fatigue. Ten months later and 5mg is still my 'tipping point'. Like others on this forum I continue to be told that I must get down to zero. I just can't see this happening. I'm 73 and wonder how dangerous it would be to accept that 5mg daily is perhaps what I need to take for the rest of my life. Kind regards to everyone on this forum -- I know many of you are going through far worse trials than I am. Best wishes.
Tapering pred and 'safe' dosage: I was diagnosed... - PMRGCAuk
Tapering pred and 'safe' dosage
It’s still not a massively long time to have GCA. Why don’t you forget about tapering for a while and try 0.5 drops at some later stage? It is clearly causing you some anxiety which these diseases love. I did that when I got stuck at 7 mgs for a year. I was then able to get to 3 mgs - something just shifted. 5 mgs is a relatively harmless dose. Prof. Dasgupta ( renowned in the field) chooses to keep some patients on 2-3 mgs for life to prevent relapses.
Thank you SheffieldJane for your kind advice.
As SheffieldJane says 2 years it not long into GCA, most on here will have had it for at least 4 years, mine was nearer 6.
Due to being undiagnosed for 18 months, it had obviously got a strong hold, and due to sight issues my starting dose was 80mg....so it took me over 4 years to reach zero.
As I’ve said many times, it took me as long to reduce from 10mg to zero as it did to get from 80 to 10mg.....many Rheumies don’t seem to get the fact it’s much more difficult to reduce at lower doses.
It’s not surprising you cannot get below 5mg,..that’s obviously what you illness needs at the moment. Doesn’t mean it will always be....one day you may well be able to get lower.....and to be honest 5mg is regarded as a low dose.
Don’t give up completely on reducing, but do it when you feel able.....and maybe use a slow taper, linked is just one variation- and 0.5mg a time -
healthunlocked.com/pmrgcauk...
Thank you so much for your reply.
There is no dose of pred that doesn't have some downside however small - but most doctors accept that 5mg is a safe enough dose to remain at for life if that is what it takes, To be at 5mg after barely 2 years, especially after being ignored for so long is perfectly OK and forcing a further reduction that results in a flare of the GCA will only result in you having to go back to a much higher dose which is very silly.
Thanks ever so for you reply! I suspect that my severe aches and muscle pains at below 5mg are due to cortisol depletion due to my adrenal cortex failing to 'wake up'
In which case - Rod Hughes, a very good PMR/GCA rheumatologist in Chertsey, UK, likes to keep patients at 5mg for up to 9 months to let the body catch up - and it seems to work in making the rest a bit easier for many.
Thank you again
What a name! Made me laugh - needed cheering up.😂💥
It's a film title from the 1950s minus the 6
Conversely, my friend, who's had pmr for 10 years, was told by her GP and heart specialist, that 5mg was a very acceptable dose and she could stay on it. No encouragement to taper so she just stuck there for 3 years. With advice on here when I suffered pmr, I helped her to reduce on DSNS method and with great difficulty, she's got to 3.5mg. She's effected in her shoulders and neck but is desperate to get off Pred as she thinks it makes her legs wobbly. She's 82 with a bad drop foot so rather infirm. However, this is saying Dr's seem to regard 5mg as the magic number to reach. I think she needs to strengthen her legs with more walking and exercises.
Thanks for your reply- Best wishes to you.
I am also 73 and have GCA-LVV since 2019 and have been on 5mg pred for the past 6 months, on the advice of my Rheumatologist. When I speak to her next month, we may discuss starting to taper - or not!
Best wishes.
Best wishes to you also
Hi titfield, I’m 73, and was diagnosed June 2019, I’m on my 5th taper after 4 flares, I’m now on 2.5mg after tapering .5mg every 4 weeks, symptoms at present; lack of sleep, fatigue, and headaches controllable with paracetamol but I will persevere unless I have another flare. My rheumy has me booked in for a synacthen test when I get down to 1mg per day and also a bone density scan.
Thanks for the reply
Do you always flare at a similar dose? If so, that is your body telling you that you have reached your destination: the lowest dose that gives the same result as the starting dose did.
Contrary to popular belief, you are NOT reducing relentlessly to zero - you are titrating the pred to find YOUR lowest effective dose. Everyone is different for all sorts of reasons - disease activity and amount of oral pred dose absorbed are just two. You will not get past that without flaring and if you force it, you will have a flare and need a higher dose again, negating the perceived benefit of getting lower. Often having repeated flares makes it harder to reduce again so it should be avoided.
The bone density scan should have been done at the start!!!
Thanks for another helpful reply. I think my problems re getting below 5mg are to do with cortisol depletion, my natural production of which seems to have packed up. I have had no offer of a bone scan. My next rheumy consultation is in mid August by telephone so no tests possible.
"my natural production of which [cortisol] seems to have packed up."That is absolutely normal - there is an explanation in the FAQs post I think so have a look.
But basically - while you are on 5mg pred and above your body doesn't need more corticosteroid so it doesn't produce any. Pred does the same job. It is like having a central heating radiator and the thermostat in a room with a woodburning stove - if the stove is lit and producing heat the thermostat signals to the boiler that no more heat is required.
As the pred dose falls, the adrenal glands start to top it up to the amount required - but it takes time to wake up and the only way to achieve that is to be at slightly too low a dose of pred to suppress the natural cortisol production. One particularly good PMR rheumy likes to keep patients at 5mg for up to 9 months which seems to help.
Thank you. I am receiving far more help and advice from this forum than from my gp or specialist (I do know they are incredibly busy and are doing their best)
Posts re Adrenals- healthunlocked.com/pmrgcauk...
PMRpro my GCA history began with; 7/8th July 2019 I had a double vision episode with serious headache around left eye followed by whiteout in left eye. Ophthalmologist Dr, thought I was having a mini-stroke and referred me to General Hospital, I was admitted Ambulatory Dept and later to Intensive Care after examination I was admitted to Ward my bloods had come back highly inflammatory, a team of specialist Doctors discussed my symptoms and I was given intravenously antibiotics and steroids. The team of doctors considered me to to be a bit of a mystery and various tests were carried out; MRI head scan,
Discharged after 10 days; with medication Prednisolone 5mg reduction plan
21 July Holiday; relapse no warning about effects of phasing preds; for one month I experienced extreme painful headaches around my eyes and several instances of double vision along with left eye blurry vision/haze/blind spot.
21st August I experienced the scariest hallucinogenic vision problems during a full day spent in Paris airport.
On my return my preds were increased and and it was quite a while before I was put on a taper and several times I have tapered too fast and had to go back to a higher dose until I could try again I have slowed to my current taper.
Reference to bone density scan is to see if I can come off Alendronate 79mg once a week.
Thanks for your reply
When was the GCA diagnosis made? To be at such a low dose after under 2 years is pretty fast - especially if you have repeatedly flared.
Diagnosed by blood tests early March 2019 - confirmed by biopsy late May. The prednisolone has almost certainly prevented some major and also life threatening happenings for which I am very very grateful. But the steroids have not just changed me physically but also psychologically
They can do - but just cutting them back is not always the answer and may end up resulting in MORE pred to sort a flare and protect your vision. There are other ways of dealing with it.
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