I just completed a taper from 6.5 to 6 mg and am exhausted all the time. Taper is old dose one day, new dose next day, alternating between two, then 3 weeks at new dose before starting again.
I am not having pain, just fatigue. Should I wait a couple of days or jump dosage back up. I know this is around level we need adrenal glands to start kicking in. Could just be that they aren’t awake yet.
You have hit the deathly fatigue stage! Your adrenal glands have decided they don’t like being woken up! I found that it is best not to reduce until the fatigue improves. In my case I turned into a zombie.
Hello, like Piglette I turned into a zombie until my adrenal glands started to work. Between 7/8mg and 5mg was the worst time. Your body needs this low to trigger it to make its own cortisol so having extra Pred to feel better is not a good idea because that just turns the clock back. You do need to know about adrenal crisis though so have a read about all things adrenal in the link from the FAQ’s by Mrs Nails.
healthunlocked.com/pmrgcauk...
I never got on with alternate day dose changes; it was too boom and bust for me. I introduced the new 0.5mg drop over at least 6 weeks. Bear in mind that it isn’t a straight improvement for many with good times and set backs according to what you are doing and how well you are. At one point a trip to a small local supermarket 5 miles away as all I could do for the day.
Adrenals - and like you all I had was random bouts of fatigue - mine started at around 6mg and lasted until I got down to 3mg - very slower tapering all the way [about 8-9 months] in total.
Slow tapering, resting when need and patience are the way - and hopefully no other signs of them struggling. …`and I do mean very slow tapering…you seem to have rushed down mighty quickly so far, so now ease up considerably….
I think you have answered your own question - and it will take more than a few days to catch up. If you go back up, all you are doing is delaying the inevitable, you have to go through it at some point.
I could’ve written this! I’m also doing alternate days 7.5 and 7. Today was my first 7 and I’m exhausted already! I’m also on Leflonamide to help me taper and of course my rhueumy wants me ‘off’ asap. But reading the replies I think a 2 week alternate day taper is too fast for me, and possibly you too. I’m going to stick at 7.5 for 3 weeks.
At lower doses -at least monthly tapers, no quicker -for PMR and adrenals -and preferably a proper slower tapering plan rather than alternate days
Thanks. I agree. I tried the 2 week alternate dose method and had a huge flare affecting my hands and wrists.
Unfortunately sounds about right....
"of course my rhueumy wants me ‘off’ asap"
Not his call, even with lefunomide. It has adverse effects and it doesn't work for everyone. Facts!!!!
Weird that they want us all off Pred asap, but they aren't the ones with the disease. The drug you're taking won't stop a flare, will it ? so what's the point !!
The steroid sparers do tend to make reducing smoother
But do they prevent flares ?
Flares are mostly due to insisting on going to a lower dose than you need - and the steroid sparers DO work for some patients and they manage to get to a lower dose. Iy doesn;t work for everyone but you don't know until you try,
they really helped me get to 4 mg. Then the flare, I should have stayed with the DSNS taped as I had before. You live and learn, the hard way.
I’m not doing alternate days. See longer taper by DL’s method. I even stayed on each mg for a month, still no good. So in my case the slower the better
Hello, I struggled with 3 different ways to Taper, until DL gave me the longer ones.....26 Mar I will be doing the Ultra Slow Taper. So far so good. Hate saying that just in case I run into a hurdle. But we must remain positive. Slower the better, even if the rheumy moans. I'm getting ready for mine when I see him on th 6 March. As I've said in my previous posts, I do not want to take the Sparing Drugs. Good luck.
While I admit I have reduced quickly, fatigue has been an issue in the past, but this time it seems worse. As to rushing it, the advice normally seen here is not to exceed 10% drop. 6.5 to 6 is a 7.6% drop.
I see my rheumatologist next Monday. Actually he advised me to slow down before Christmas at 7 mg. And he doesn’t push to completely get off of prednisone. Obviously adrenals will be a topic of discussion.
Thanks for all the replies.
adrenals kick in at 4.5 or so, 5 at the earliest. But your fatigue may be a side effect of the PMR. Good luck with it!
adrenals kick in at 4.5 or so, 5 at the earliest
It varies - higher for some, lower for others - and they very often don’t ‘kick in’, but creep in -
healthunlocked.com/pmrgcauk...
Thanks, as always for your clarity and wisdom. Amy
I think really it is more that they don't "kick-in" as everyone seems to thinks but creep out of hiding kicking and screaming for many. At 5mg you are often already fatigued but rarely getting any contribution from them. And that may start even higher, at 8mg or more.
Has anyone tried DHEA for help coming down and energy improvements. I have and is good !
what is DHEA?
A steroid hormone that makes cortisol oestrogen and testosterone within the adrenal glands.
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