Hello good folks on this priceless information page. I have been on Pred since PMR diagnose in 2014. The 20 mills of pred prescribed at the time were like a miracle. I was normal again.
Now 6 years later I'm on 5 mills a day. Trouble is I steel feel stiff as a board, and lack energy, a sort of fatigue. I have been trying to taper off for the last few years, and the 5 mills a day keeps the main symptons at bay, but that's about it. I increased to 7 mills this morning, and already I can feel the difference. I'm tempted to go what the hell, and increase to 10 mills if that gives me some sort of normalcy again.
Trouble is I acutely aware of the long term bad effects that can result from the dependency on steroids, but is it worth struggling in the meantime? I'm at bit of loss on this one? Thank you
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Southmead
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Hi southmead, I think if the 7mg works then stay there. If it a flare, I tend to do plus 5mg....which for you from old dose would mean 10mg...for a week then return to 1mg or 2 mg above the problem dose. So you could drop to 7mg after a week. I have had to do this a couple of times of more. Good luck!🌻
Never worth struggling - 7mg is a physiological dose, much the same as the body produces naturally in the form of cortisol in order to function.
I've been on pred heading for 11 years, maybe 2/3 of the time at 10 or above. Quality of life is all. I can function now - or I can risk maybe being able to function in 10 years time. I'm a jam today girl ...
Have you seen an Endocrinologist at all? Adrenal function difficulties can cause this type of problem. You may have to wait to get this tested but it is worth investigating.
I’m very much in the same boat. Diagnosed around the same time. The initial 15mg of pred was like a miracle, pain free within 8hrs. The journey from then on has seen many switchbacks! I’ve been up to as high as 40mg and can never get below 12mg. I’m currently on 12mg and am struggling. Sleep is literally a pain and I’m finding that I get some relief by taking Zapain (codein and paracatemaol) at night, quite often taking a second dose around 3 am. I do try to be active and take a walk every day even in these current times. Luckily we live in a very rural area so hardly ever see anyone. I get very fatigued and have to really pace myself, which I’m not good at, but still find myself shattered. I’ve tried all the steroid sparing drugs and they either didn’t work or made me ill. I’ve tried CBD oil & PEA without any noticeable difference. I’m not sure what to do for the best at the moment as I am functioning, albeit in constant pain and quite stiff, but not able to do as much as I would really like. My last appointment with the Rheumatologist resulted in him advising to reduce by 1mg very 4 weeks, I was on 15mg when I saw him. To be fair I was slightly better on 15mg but still not great. So like you a bit of a loss on what to do.
Have they not considered it might not be "just" PMR? Pain that comes earlier in the night is typical of ankylosing spondylitis - and you wouldn't be the first to have the same experience. It also typically respond at higher doses of pred, patients struggle to reduce below the low teens and get some relieve from ordinary painkillers - especially NSAIDs as Naproxen is often used as a first approach while waiting for the biologics to be sorted out. It responds wonderfully to anti-TNF biologics, of which there are at least 5.
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