Hi everybody. I am just starting to reduce pred again i got down to 5Mg but soon started to suffer eventually ended back at 10 mg again, I have stuck with 10 mg for two months now and am starting reduction Oct 1st, first day I took 9 mg plan was to continue with 10 mg for a month then two days in November on 9Mg then rest of the month 10mg and so on until I am on 9mg all the time, my question, is this to slow should I do the same but weekly?
Mike
From 10mgs I did my taper like this. Mon 9 mgs Tues 10 wed 10 thurs 10 Fri 10 Sat 10 Sun 10' then the following week I would have 2 lots of 9 ( apart) and 5 of the old dose 10. Each week I would keep replacing the old dose with the lower dose on one extra day. So eventually I was on 7 days of 9mgs. If this settled o.k I started the same process to get from 9mgs to 8. I am paused at 7 mgs now because I have begun to get symptoms and I've been travelling but I am about to go for 6 mgs.
It seems to have worked so far and I think I would be at 6 mgs if it hadn't been for boats and planes and trains and pulling wheeled suitcases. It has taken a week of not much apart from a daily walk to recover. Onward and downward. I may have a re- think at 5 mgs. I am interested in PMRPro's story of the Rheumatologist who keeps his patients at 5 mgs for one year. It kind of makes sense and would allow the Adrenal Glands to grind into gear.
I would stop if under stress or became ill with a virus or got PMR symptoms for more than a day or two. Hence dead slow and stop. I would also try it with 0.5 of a tablet if it felt a bit too much.
I hope this makes sense. It is a bit cat and mouse at low doses. 🐱🐭
That's very interesting...I missed PMRpro's post about a rheumatologist's advice to stay a year at 5mg. That's exactly what my rheumy has advised for my GCA. His view is GCA is a two year disease, taper as quickly as symptoms allow and then stick at 5 for up to a year before the very gentle taper down to zero. I started at 40 mg in March and I'm now down to 6 and all going ok so far...tho I hate saying that in case I'm tempting fate! My worry is that staying too long at even only 5mg might cause the adrenals to just become so lazy they really can't get up and running again. I see him again in a month and I'll grill him on the subject and report back!
At 5mg oral pred the adrenal glands are required to top up that dose - the physioogical dose is about 7-8mg. So they are being prodded at 5mg but you are on a dose that protects you to a great extent from an adrenal crisis That's why that is the chosen dose. Your rheumy is wrong on one thing though - GCA is NOT a 2 year disorder. Something nearer 5 years is the average. If you are off pred in 2 years you have been very lucky.
Hi sailorman,
You can only try and see - going slowly is by far the better way - and it’s not TOO slow if it works!
Better that than have a relapse as you did before.
Like Jane, once I got to about 6mg I started reducing 0.5mg a time, but many do start that regime at 10mg. You have to remember that the lower you get the bigger each reduction becomes in percentage terms, and that can make it more difficult, whereas lots of people think it’s going to be easier.
Good luck.
Thank you both, i will continue reducing over a month rather than a week and see how I get on.
Mike
Hello Dorset Lady,
Thank you for your advice I have now been reducing for a month as suggested and now just about to be on 9mg all together. Do you think I should stay on 9mg for a month before starting on 8mg one day then 9 mg for 6 mg then 8 mg one day 9 mg for 5 days etc. I have read that some people suffer from withdrawals symptoms, what form do these take? since reducing from 10 mg to 9 mg i have experienced occasional groin pains not severe but uncomfortable could this do you think just be withdrawals. Otherwise all going well thanks to you and the forum.
Mike
Hi, or this one
healthunlocked.com/pmrgcauk...
I started this one once I got to around 7mg.
I did find on higher doses when I didn’t know better and was doing a taper overnight (one day old dose, next day on to new dose) that for a couple of days I got mild withdrawal symptoms. Mine were just a feeling of yukkiness (not a proper word, but you know what I mean) whereas others may get a more severe reaction, but it should go within a couple of days.
I found doing a slow taper meant that a. no withdrawal symptoms, and b. usually I could go straight from one taper into the next.
Your proposal does sound ultra slow, but as we always say - do what suits you best, and sometimes that means trying something different.
Good luck.
I may be an advocate of SLOW - but if I understand your approach I think it is a bit slow! You do realise that will take you a VERY long time to reduce to every day 9mg?
This is a slow method that seems to work for most people who have tried it:
Reducing my meds again
Reducing advice 
Nine... again! 
Reducing pred .5 every 10 days
