My husband has had PMR for 18 months now. He is 65. He started on 40 mg predniprednisone daily and for the last 6 months he has been on 5 mg....and he feels great. He has lost in total 25 kg in weight and has had no adverse side effects from the use of Prednisone. All bloods are good, he has very little pain and is living a virtually normal life. He takes calcium and K2 and eats very sensibly. Bone scan does not show any problems.
I have heard that 5 mg is considered a safe maintenance dose. So the question is whether he now starts to taper again with the potential problems he could have...of course he may not....or stick on the 5 and continue to enjoy life. Just wondering what others experiences are. Gp seems happy to let him stay on 5 mg. Thankyou.
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Piglets1
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He started on a high dose for PMR, was GCA suspected?.. and that may be why he has got down to 5mg without too much issue.
Provided his PMR goes into remission [and no reason why it shouldn't given time] then why would he what to stay on a drug unnecessarily?
The idea is to taper gently as the illness recedes, and hopefully once it goes into remission come off the pred entirely... not always as simple as it sounds mind you.
So maybe stick at 5mg for a bit longer but then try reducing - either 1mg a time, or easier is 0.5mg a time... and if necessary a slower tapering plan - couple here -
PS - do you realise you have posted this twice? Perhaps you'd like to delete the other one unless it already has replies - or you'll have 2 running together..
Edit - see you do have replies to other post so will copy my comments there as well,
I’ve been on 4.5 mg for 3 years now and lost count of the amount of time I have tried to reduce even .25 of a mg , every time it all goes wrong . And I go back to 5 mg for a weak struggle back to 4.5mg then I am perfectly fine . I still find it hard to accept my adrenals probably don’t work properly anymore , hence I keep trying to reduce , but it looking more and more like I’m a lifer on pred , over 8 years in now and also on MTX for RA issues also . Hope you get off one day but quality of life is the key at the end of the day . Good luck 🤞
Hi, you’ve replied to me not Piglets1 but they’ll see it anyway. Sorry to hear you are still struggling to reduce, but as you rightly say QOL is paramount.
After 18 months, being at 5mg is about on the curve. He is very likely to get lower than that over time so it is rather early to resign himself to being on pred for life.
In general, a very common duration of pred is about 4 or 5 years but many are off it before then. If you have heard the "PMR lasts 2 years and then is GONE" myth - it is indeed a myth overall but about 1 in 5 manage it.
However - I've been on above 5mg for the entirety of my 15 or so years on pred and it hasn't killed me yet!!! In fact, can't really identify any major downsides of long term pred - but it has allowed me a pretty decent quality of life.
The reason I wouldn’t want to stay on 5mg if it wasn’t necessary is that I’d prefer my adrenal glands to work on their own rather than be forever needing to be reliant on steroids to avoid an adrenal crisis. For some, the adrenal function never comes back so some sort of corticosteroid is a life saver.
As to whether it is bad over all, I think it depends on the person. For me 5mg was plenty enough to know it was still on board so I assumed the negative side to it may also be still worth thinking about.
Perhaps he could try a very slow taper at 0.5mg a time introduced over a couple of months.
People who stay on 5mg have tried hard to reduce and it's found they can't - it's not a choice for people who haven't tried - surprised at your doc thinking it's ok. When it's called a safe dose, it means it's probably unlikely to cause major problems like osteoporosis, it doesn't mean it's entirely innocuous. Also, as people have pointed out, it is still doing the work of adrenals which means you are dependent on medication to function. This could bring issues, even though he is well now. Nothing stays the same in GCA/PMR/pred- land!
At 65 your husband should be more than able to do one of the nice slow reductions highlighted in the responses. He may have some bumps in the road but the end goal of pred-free is more than worth it.
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