Reducing Pred--Speed and Amount?
Posted , 12 users are following.
I recently reduced from 8 mg to 7 mg using the DSNS method. When I got to 7, I experienced
exhaustion for about 2 weeks. Now I'm doing better, though still tired (no return of pain). A few questions:
--Was the exhaustion due to pred withdrawal or due to adrenals taking time to kick in? Will the tiredness eventually fade? How long might it take, on average?
--I'd like to try reducing further. Would it be wise to try the next step of the reduction now, or should I wait between reductions? If I should wait, how long? A few weeks? Until tiredness goes away?
--Since I will be using the DSNS method, which is very slow and gradual, would reducing by 1 mg to 6 mg be reasonable? Or should I reduce by only 1/2 mg to 6 1/2? People have mentioned not reducing by more than 10% on this forum, but I had the impression that was if you were doing a straightforward reduction all at once, not with the DSNS method.
Thanks for all your help.
0 likes, 8 replies
EileenH jeannecatlover
Posted
Impossible to say 100% but I'd think that if it improved with time, the fatigue at 7mg was your adrenal function lagging behind. How long will it take to go away? How long is a piece of string! It is said that adrenal function takes a year or so to return to "normal" even after discontinuing pred altogether. I would think that as long as you are reducing there will be some effect each time until the adrenals are fully awake.
A lot of people use DSNS and 1/2mg - some people manage 1mg, others find it hard. The only way to find out what you need is to try - everyone is different. That also applies to how soon you start the next reduction. One top PMR rheumy likes to keep people at 5mg (once they get there) for up to 9 months until their body catches up - and it does seem to make the rest of the reduction go better,
Joydeck jeannecatlover
Posted
I have only just tapered from 7.5 to 7 mg pred without PMR symptoms so far.
I have spent the past 6 months around 7 mg with mild but annoying PMR symptoms : particularly weariness and shoulder ache. These symptoms have been erratic but tended to worsen with time. Reverting to 7.5 mg, two months ago, certainly helped.
I have come to the conclusion that remaining pain-free is better than ambitious tapering.
Joydeck
Posted
My taper from 7.5 to 7 mg has failed once again. I spent a week on alternate day dosing of 7.5/7 but only lasted a few days at 7 mg because bilateral shoulder pain was steadily increasing.
Interestingly, the shoulder pain is identical to that in the beginning and, therefore, unlikely to be pred withdrawal. So, I'm back at 7.5 mg and happier.
jeannecatlover
Posted
Thanks very much for those replies. Since I previously reduced to 3 mg and then had to go all the way back up to 9, I think I should probably stick at 7 mg for a while in hopes the adrenals will gain some function (I'm still pretty tired, despite upping my caffeine), and then try reducing to 6.5.
Eileen, the information about how long it can take the adrenals to return to normal is very helpful.
Joydeck, sorry to hear you had to go back up, but it sounds like that was absolutely the right thing to do.
christine80778 jeannecatlover
Posted
Just started tapering to 7mgs. I saw the rheumatologist for the first and I gather only time yesterday. He used exactly the same phrase as my GP, alluding to my 'aches and pains'. I was really cross and told him that the effects of polymyalgia are being trivialised by the use of such terms. Personally, like most of us I am sure, I was completely disabled by it, unable to dress, wash, turn over in bed etc. I was so despondent at lack of interest from medical professionals that I was looking at the pills at my disposal because I simply could not live a life like that. thankfully a different GP eventually gave me the few cheap prednisolone pills that relieved all symptoms in 12 hours!
EileenH christine80778
Posted
Good for you - I don't know how you get through to them just how bad PMR can affect day to day life despite there being a study on it:
http://eprints.whiterose.ac.uk/85252/1/WRRO_85252.pdf
If you are familiar with the Yorkshire accent it is a hoot of a read! But oh so accurate!
christine80778 EileenH
Posted
that was so good to read. I don't think my GP had ever seen anyone with PMR. Like in the study I found it almost unforgivable that I struggled for so long to the point of contemplating suicide before being diagnosed and treated.
Anhaga jeannecatlover
Posted
The dead slow method is devised in part to help with the lower doses because it's next to impossible to reduce by 10% or less once your dose is below 10 mg. I found by the time I got to 7 I needed to reduce by .5 at a time, but I was also for a few months able to drop a second .5 mg in the middle of each DSNS taper. Eventually I was using long form (6 day) DSNS and only tapering by .5 mg for the entire six weeks. But once I got to about 2 I just attempted a taper when I felt it was time, not able to carry on tapering regularly month by month. The lower the slower. I've been in the environs of 2 or 2.5 for about two years. Any attempt to taper has not worked out.