For those who have been on 60 mg predisone due to GCA diagnosis (or symptoms of...) - how long were you at 60? What tapering schedule did you follow? Thank you 
Prednisone dosage: For those who have been on 60 mg... - PMRGCAuk
Prednisone dosage
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4683Louise
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Can't help with personal experience, although others will be along. But here is a link to an article which includes a widely accepted tapering schedule for GCA. A little over halfway through the article.
rcpe.ac.uk/sites/default/fi...
Thank you !
DorsetLadyPMRGCAuk volunteer
This was mine - but as we say we all vary, and whatever you do symptoms are the key. If you don’t feel well enough, don’t reduce!
Start dose April 2012 (after loss of sight in right eye)
80mg - 2 weeks
60mg - 8 weeks
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 (Xmas period)
2013
14mg - 3 weeks
13mg - 4 weeks (1st 4 days @ 13.5mg)
12mg - 10 weeks (1st 4 days @ 12.5mg)
20mg - 2 weeks***
17.5mg - 2 weeks***
15mg - 2 weeks ***
17.5mg - 4 weeks***
25mg - 3 weeks ***
***Raised ESR, due to stress over hubby being very ill, liver cancer diagnosed and subsequently dying. No GCA flare.
20mg - 4 weeks (slow taper)
15mg - 6 weeks (slow taper) - changed surgeries
14mg - 2 weeks
13mg - 9 weeks (Xmas)
2014
12mg - 10 weeks (slow taper from now on)
10mg - 3 weeks
9mg - 6 weeks
8mg - 6 weeks
7mg - 6 weeks
6.5mg - 6 weeks
6mg - 12 weeks (visit to NZ)
2015
5.5mg - 6 weeks
5mg - 8 weeks
4.5mg - 6 weeks
4mg - 10 weeks (unexplained neck/back pain)
3.5mg - 5 weeks
3mg - 9 weeks (back pain)
2.5mg - 6 weeks
2016
2mg - 5 weeks
1.5mg - 6 weeks
1mg - 4 weeks
0.5mg - 16 weeks (couple of false starts, plus holiday)
Zero
Many doctors would probably recoil in horror at the length of time it took, but I know for sure my GCA was still alive and kicking until I reached about 1.5mg (a total of 5&1/2years since 1st symptom).
Plus as I said I never had a flare, and have been off Pred for 18months with no recurrence, so to me that’s a success story.
Hope this helps.
DorsetLady- Oh my goodness, I am awe-struck. First of all, thank you so much for sharing your story with me. Secondly... I see this journey is not the 'quicky' my doctor first thought it might be. In that spirit, I think i tapered too fast ("I'm tough- I can handle it") just going from 20 to 10 in a couple days, had a flare that dr wanted to investigate as GCA (no new symptoms, just elevated blood work). Will definitely be patient and slow with this next taper. Thank you for your inspiration and encouragement. Blessings to you.
Yes unfortunately lots of doctors think like that - or they know but don’t want to dishearten the patient with the true timescale. But I think they should be more honest- if they do actually know!
My consultant ophthalmologist was truthful at the outset so I was under no illusions that it would be a quick fix.
Take care
Even if all you had were PMR going from 20 to 10mg in a few days would cause problems! Most recommendations would say a month at each dose before reducing again - to be sure the new dose is still enough to manage the inflammation.
Hi Louise, I started on 40mg for GCA. I'm afraid I don't have dates like DL but I was diagnosed 3 years ago this month and was very up and down for well over a year. I couldn't seem to get below 20mg before the headaches and jaw ache started again. My rheumy gave me a timespan of a year maybe two!!! This forum has really helped me come to terms with everything and I think I'm doing well now. I'm down to 8mg. Good luck to you.
Sounds like you handled the taper perfectly! ....especially through your husbands illness and death. I am sorry for your loss. We appreciate that you continue to support others with all your knowledge and optimism...Thank you💕
Hi DL, I wish I'd kept a record like you, mine are all approximations as, like a lot of others, I didn't realise this was going to last that long. It was thanks to the lovely people on this forum that I came to adjust to the timescale. I'm currently on 8mg and have been for about 6 weeks. I'm just gearing up for the very slow reduction to 7.5!! here we go!!
Good luck!
Dear 4683Louise,
I've only got GCA, Male age 70 started symptoms in December 2013 confirmed diagnosis in January 2014 started on 60 mgs for four weeks and 3 days later the headache had gone. You are lucky none of my Doctors said anything about duration of condition so it was a mystery why Consultant Eye Doc was reducing so fast without blood tests
ESR CRP
Date (1-14 range) (1-5 range)
Pred.
27/01/14 85 60.0mg 155
28/02/14 18 40.0mg
24/03/14 07 30.0mg
22/04/14 06 20.0mg
19/05/14 01 17.5mg
16/06/14 04 15.0mg
14/07/14 07 12.5mg
11/08/14 11 10.0mg
03/09/14 16 10.0mg 11
ESR Reductions are quite large to start with. I'm still reducing after a Flare in July 2017 down to 8 mgs last CRP reading was 7 but this is unusually low for me.
Hope you journey (Pred) is good for you and don't hesitate to ask any questions you have someone will have the answer. DorsetLady can be relied on to have lots of knowledge.
Best wishes
Colin
Diagnosed in May 2017
60 mg for 8 weeks
Reducing by 5mg each week until
15 in September for 2 weeks
12.5 for 2 weeks
12 for 1 week but headaches so back to
13mg for 2 weeks
12mg for 2 weeks
12/11 alternating for 3 weeks
11 for three weeks
11/10 for 1 week
Currently on 10
Planning to stay on 10 until mid March (covering a holiday)
Then plan to reduce to 9mg for a few weeks and taper by 0.5 mg thereafter.
I was diagnosed with PMR/GCA in December 2017 and put on 60 mg of prednisolone. We started reducing after two weeks... the reduction was way too aggressive (5 mg every 7 days) so when I reached 45 msg I crashed and burned. Was worse than the original episode. Was then put in 80 mg because 60 didn't touch it. Have been on 80 for 8 days now and due to drop to 75 on Saturday. Will drop 5 mg every 10 days. Fingers crossed.
4683Louise• in reply to
Mamaici1- I hurt for you with that fast taper and crash. Very similar story here. More soon. Sending thoughts for a good day
I still think every 10 days is too often. Every time you crash getting things under control seems to get harder.
It isn't slow when it works and it isn't fast when it goes pear-shaped...
• in reply toPMRpro
PMRpro, I agree wholeheartedly! ...but feel I am stuck between a rock and a hard place. I'm new at all this; I went private, so that I could get professional advice from a specialist... she admitted she was aggressive on first the taper down, because she believed I was at the very beginning of the my first episode. I believe I have suffered with PMR for years and it morphed into GCA, because it went undiagnosed. I want to trust her, but yes, I'm leery. I respect the opinions and experience that I read about here, but not sure how to find my voice and get equal footing with Rheumatologist in the medical decisions when I have no experience or background with this. 😕
Since you are private anyway - how about taking a day trip from deepest Brighton to deepest Chertsey to our favourite rheumatologist.
Remember, a doctor who does private work also does NHS work and it is no guarantee that them charging you a lot of money to cast their eye over you makes them a better doctor. Just saying...
• in reply toPMRpro
Who's the favourite? Hahahaha, and where's Chertsey?
Surrey, just off the M25, before you get to the M3
Dr Rod Hughes drrahughesrheumatologyltd.com/
• in reply toPMRpro
Thank you!!!!
mngirl• in reply to
I feel the same. I don't know how to talk to my doctor.
Yep, so agree. It appears that each time the inflammation is allowed to build up (obviously not by patient’s choice) it seems to get a second wind!
• in reply toDorsetLady
Yup.... that was unfortunately my first experience! 😞
It’s a pity that nobody has carried out a study on the effects that I having a flare/flares has on the overall GCA/PMR timeline etc!
The medical boffins are obviously fully aware that flares happen because there’s a paragraph in the guidelines so why don’t they try and avoid them in the first place?
Surely prevention is better than cure? Or am I being naive?
I know! I know of a few who have pontificated that flares are part of PMR/GCA! Obviously - but once a patient is on pred there is no need for high power flares at all if you keep a close eye out and don't take risks. Quick/Kirwan say in the Bristol paper that reducing more than 1mg/month is predictive of flares. Can you say it more clearly than that? But then they go on to reduce faster than that above 10mg. There seems to be a concept that all patients need 10mg or less from a very early stage - which we all know is bunkum.
If only, I think most of us would settle for 10mg at start - but we know it ain’t going work!
So keep banging head against wall! 🤨
It is the docs who indulge in the definition of insanity that annoy me - if it didn't work last time, why should it work this tume?
"Insanity: doing the same thing over and over again and expecting different results."
(PS, much preferred the version of the quote above this one in google but I thought I might offend...)
Patience47• in reply to
Mine too 😕
Oh, only a couple of hours away! I'd go! What us the doctor's name?
Hi!
I was on 60mgs a day for a total of 7 weeks - was putdown to 40 for just 2 days at around 4 weeks, , but Rheumatologist decided because I had lost sight in my left eye that it should go back up to 60 mgs as a precaution. The dose was going to drop from 40 to 30 after around 3 weeks, then to 20 after around another 3 weeks, then 17.5 then 15. I had a scare with a headache then strong pain at the back of my good eye, and ended up going to A & E. Fortunately a scan showed no damage, but was then put back up to 60 mgs straight away for 5 days, now back on 4o mgs for 2 weeks, with a tapering plan at a much slower precautionary rate of dropping by 5 mgs every 2 weeks.
This is obviously my experience, but hope this has been helpful to you.
Hope you go on okay.
Bribaz- thank you so much, that is very helpful. So happy for you that your scan was clear! I hope you are getting along well, too, and that it will be a good day.
Ive been on Prednisone for 4 months... tapered down to 10 (probably too fast- flared) and have been on 60 for only 2 weeks. Every day a couple hours after I take my dose, I don't like how I feel... very jittery, emotional, thigh muscles burning. That makes me wonder if my dose is too high. Then evenings feel like a mini flare as well as next morning before I take meds, which makes me feel my dose is too low. Is the daily rollercoaster normal this early in the process?
Any thoughts on the pros and cons of taking complete dose at one time versus spreading portions of it out over the day?
The jittery feeling is very common - one lady found taking her pred before bed solved that, she slept through it.
The antiinflammatory effect of pred lasts for between 12 and 36 hours or so. If you are nearer the 12 hour end the pain will start to return about that sort of time. This can be improved by splitting the dose and taking say 2/3 in the morning and the rest later in the day, about an hour before the pain would return. HOWEVER - most doctors don't like the idea of splitting the dose in GCA. But I can't see it is any different to the symptoms resurfacing half way between doses.
One thing that has really bothered me with the initial Prednisolone dose of 60 mgs I took at the very beginning of my GCA, is that I was told to take the 60mgs on the Friday night straight after I had been to the eye clinic at the hospital. I went back to the hospital the next morning and away early afternoon. Because I was in total "shell shock" over the sight loss, and told to take the Prednisolone in the mornings, by the time I got back to my house it was around 4pm on the Saturday, so decided to take the second dose on the Sunday morning (which I did around 7am). - my head was spinning and not thinking straight at the time because of the shock.
With what you have said in your post about the anti-inflammatory effects life of the Prednisolone, do you think I made things worse with the 36 hour gap with not taking any on the Saturday? With my weight being at 50 kgs and a 60 mgs dose it sounds like that would have taken me over 24 hours because of the amount of dose in relation to my weight being lower. I have been told that it most likely would not have made any difference by 2 people at the hospital and a Pharmacist - would be interested to hear your view though?
It probably didn't make much difference though there is no way of knowing. Did you have any return of the symptoms in that time? Did the effect last? A lot o doctors would have kept you in and given the pred via a drip - straight to the scene and no loss of dose. Some people absorb far less through the oral route - it doesn't get lost with the iv route.
Very interesting - 3 eye doctors were discussing my case on the Friday afternoon when I first went to the hospital - at the time I did not know what was going on - my only symptom of anything being wrong was a shadow in my left eye vision, and no GCA symptoms at all.
The main eye doctor then told me that a steroid drip was an option, but they had decided against it - I did not know at that time what they were really meaning. They did not give ne any reason why they had decided against it, and prescribed Prednisolone tablets.
With not getting any GCA symptoms in my case, there was no way of me telling how effective the 60 mgs of tablets was being or if the effects had worn off in the 36 hours between the first and second dose.
After my "scare" over my good eye and resultant visit to A & E 2 weeks ago, the eye doctor I saw looked at my records on screen and asked me twice if I had been put on a steroid drip - she seemed surprised that I said no. I have seen around 6 different eye doctors at the hospital in my many appointments there now, and she is the only one who queried the steroid drip with me. I am wondering now if I had been put on the drip if my sight loss might have been less, and the reason why they decided against the drip.
The drip is a much higher dose usually - and it is there immediately, no waiting. If you already had a shadow in your vision and they thought GCA - why on earth did they not give you one?
While it pains me to say it - I think I might explore that with legal advice.
I was wondering the same myself - I told them I had PMR as well. They did not say why they had decided against the drip, but at least 2 of the eye doctors must have discussed my case as the main one told me WE have decided against the drip. The shadow in my left eye had not come down to my central vision on the Friday afternoon, but by the Saturday morning when I was reading the letter chart it had just about covered it, so I could no longer make out what the letters were. Question is, would that have happened if I had been put on a drip on the Friday evening? Surely they should have played safe here - what, if any, were the advantages of just giving me a 60mgs Prednisolone dose on the Friday night? This is really bugging me now. Do you think I should approach them first for an answer before possibly taking this further?
I would certainly be asking some questions. Nothing will bring your vision back - but even if all you get out of it is that they never leave a ?GCA patient again you will have earned a laurel wreath. And possibly if enough noise is made the guidelines will be enforced/strengthened.
In Scotland an optician had a patient he thought had GCA and decided to sleep on it instead of sending them to hospital as an emergency the same day. Next morning the sight had gone. The optician was disciplined - and it had a big effect on his colleagues.
The major factor remains that if the sight is gone in one eye the other is also affected within 2 weeks or so in a very high percentage of cases, even with immediate high dose pred treatment. DorsetLady on here lost sight in one eye - and had a very tense 2 week wait to know the other was OK.
Yes, I will certainly be asking some questions. I suppose to look on the bright side, my other eye is still okay after more than 3 months.
I don't know how long the shadow had been in my left eye before I noticed iit. If I had been aware of it a couple of days earlier maybe I would not have lost the sight in it. On the other hand, if I had noticed it 2 days later, it might have meant my other eye might have been affected as well.
PMRpro is very knowledgeable on Prednisolone Louise, and I do not know the answers re dosage and when to take or split dose etc. I am lucky that I do not suffer much in the way of side effects from them.
Hope you find a good plan on when to take them that suits you.
I started at 60mg in November and every two weeks came down 10mg am at 10mg at moment from today ... I ve a cold/chesty today and sweating a lot. I feel I should not drop down today due to cold I have..could not get through the to hospital help line today : ( Hard to know what to do
I wouldn't reduce your dose while unwell - this is usually advised against - it won't hurt to sit on it until you are better.
Best wishes
I agree with Rimmy. You have been dropping very quickly and it is probably time your taper was slowed to a more reasonable rate. Your body has to adjust to each new dose and that gets harder as the amount of pred you take lowers, and especially at 10 mg. You started at a GCA level - do you have GCA? If you do, that taper is dangerously fast. If you "only" have PMR it's time your taper was slower anyway.
Thanks for replays it helps .....great support..... Yes I've got GCA I decided last night to take the other 10mg as it did make sense when your sick not to lower so now I think I ll stick with it for few more days
Thanks : )
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