It is so difficult to judge! I understand that forcing reductions is pointless, doomed and trashes Quality of Life. I understand that infections and stress can cause complications when tapering dose (or anytime). Also that Pred is not a cure, but a treatment, and that feeling 70% better is the average, realistic expectation at the 'right', lowest dose - although I have picked up that successful control of inflammation is more likely to shorten the illness to enable remission - although that is unclear? I also understand that a period of 'settling' is often to be expected after a reduction. And that is where the difficulty comes in - is the settling/symptoms/flaring due to just changing the current limit, (and my body is struggling to call for natural cortisol) and I should wait and see for a while at that dose - or am I being obstinate and I should retreat to the previous dose because I am not ready to reduce? I guess it comes down to how long should I wait to see if I am 'settling' and then decide? A week, maybe? (I became ill with PMR a bit more than a year ago. 5 months later, I went on 20mgs for about 4 months, then monthly drops down to 14mgs at the moment. I was pretty good at 15mgs, but 14mgs for the last 6 days is giving me symptoms). I worry that if I retreat to a higher dose as soon as I feel something adverse then I will never get down to the lowest pred dose sufficient to alleviate symptoms (as I have learnt on this site is the goal). I have read the links (thank you), and Kate's book, but still find it difficult to judge which way to go. Thanks again. T
Symptoms - settling, or dose too low: It is so... - PMRGCAuk
Symptoms - settling, or dose too low
How about you look at the pinned post 'Tapering Steroids' and try DSNS. They are on the right hand side of this page.
may well come to that - thanks. Even so how long after any adverse reaction should we say - OK! I need to change back / change approach. Thank you
It is tough and you seem to have absorbed the key facts, then it is down to patience and intuition. Good luck!
thank you. T
If you’re still at 14mg your body is not “struggling to call for natural cortisol” - it won’t do that until you get lower - 7.5mg is approx to what your body normally produces, above that, steroids override natural production.
If you have issues for few days (up to a week maybe) after new lower dose - then that’s probably steroid withdrawal whilst your body is adjusting to new dose and is nothing to worry about, may be helped with paracetamol.
Should issues last longer than about week, or start at that stage then that indicates too low a dose, and tbh no point in trying to tough it out - invariably it will only get worse.
If the latter scenario, suggest you go back to 15mg - get back on track, then try again.
Also if you are still struggling a year in, maybe it’s not just PMR or you are not treating it as you should. Are you being treated by GP - if you are not responding to treatment perhaps you need to see Rheumy. Not easy I appreciate in these current times.
Not matter how fast or slowly you reduce, it won’t necessarily shorten the time you have PMR (that seems to have its own built in time limit), but if you have no flares and are on appropriate dose obviously that improves Quality of Life (QOL).
Thank you very much - I have a rheumy - but while he doesn't stop me titrating my doses, he has warned me about 'playing with the dose'. Knowing what I know from this site, there was no point in asking him to explain further, I feel!
Reassuring and insightful - thank you - I appreciate v much the bit about PMR having its own time limit - one less thing to worry about managing.
So clear, so helpful. Can’t thank you enough ❤️
Adrenal problems is unlikely at a dose of 14mg (not impossible but very unlikely). Above about 8mg the pred replaces the need for cortisol - the body doesn't care if it is natural cortisol that is the corticosteroid or synthetic pred. For the moment, 14/15mg may be the lowest dose that alleviates symptoms - and it isn't that unusual to need that much.
When did the symptoms (whatever they are) start? When they are soon after changing the dose.it is steroid withdrawal and they should improve over the following couple of weeks. But there are some people for whom any change induces unpleasant feeling that last a long time. There are people who can only reduce by 1/2, even 1/4mg, at a time and even using the DSNS approach where you ask your body to accept the new lower dose just one day at a time. Asking it to do the same every day without respite is harder.
Very useful answer. Thank you once more. The adverse symptoms at 14 mgs (stiffness shoulders and arms, weakness & discomfort reappearing in wrists, weak legs, general ache - eg: I had to use a screw driver to tighten something but after 4 or 5 turns I was distinctly less able to summon the strength in my hand) started 2 days after reduction from 15 to 14mgs. Perhaps I should hybrid (now that I have started) and go back to 15mgs and then after a week reduce by 1/2 mg per a month. And if that doesn't work then DSNS. 'Intuition'! As Sheffield Jane says. Rheumy sent me for a CT and more bloods to eliminate other diagnoses. I will advise if anything interesting comes up.
It is tricky. My rule of thumb is that you might expect to feel a bit rough as you reduce for a few days, and those aches should go away with paracetemol. Beyond say 3 days it is probably that symptoms aren't being adequately controlled and I need to nip it in the bud before it escalates. For example, am I feeling stiffer, is it more difficult to get up out of a chair, are my shoulders more painful, has my breathing changed (I have inflammation in my airways), even like you, can I open a jar. Resistance is futile, I need to listen to my body. We are all different but that's how I deal with it, and my rheumatologist, who is ne of the more enlightened ones, agrees. She also stresses don't rush things and stay at doses longer. Yet other rheumies say don't stay at doses longer because your body gets used to it which makes it harder to reduce. I think that is nonsense nad have not seen any studies to support that theory. Truth is we just don't don't know as no research has been done and everybody is different.
Thanks. Btw, I have the airways inflammation too which closes off so I gasp and makes me sound like Serge Gainsbourg but only for two days and then improves. Agree with your other points! Thank you. T
Mine is upper chest and upper back just between base of neck and shoulder blades, like a tight band. I have had loads of tests to find out what it is and having ruled out anything serious docs conclude it is inflammation.
me too across the back - good to know it is either PMR or Pred effect. Thanks.
I've still no idea what it is, I only know Pred sorts it! It's the first symptom to come back if I drop the dose too much. It may not actually be PMR, so many things respond to steroids. I know it's not asthma or heart or lung disease or aorta or LVV as I've been tested for all those
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