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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There is no reason why he should not stop taking steroids altogether rather than continuing at 5mg, if he feels OK. The majority of people weane off totally. He can continue to slowly reduce. Has he been told not to reduce below 5mg?
For completeness - copied reply from your other post-
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 -
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.
worth trying a gradual reduction..the longer he is on it the harder it is to get the adrenals back in action...pred is a wonder drug but better to come off it if possible ...it can have such a wide range of side effects... thinning skin, easy bruising, diabetes , cataracts and glaucoma, susceptibility to infections (UTI etc), osteoporosis....I don't want to make it sound scary and some get none of these side effects. Perhaps a very gradual reduction is worth a try...he can always go back to his preferred dose.
Hi. I started ar 30mgs pred about 6 years ago and have now tapered to 1mgs. On the way down I stopped for a few months at 10 and 5mgs before carrying on with a taper. Planning to stay on 1mgs for a bit longer before slowly tapering to 0. Wouldn't want to have stayed at 5 forever - can't really see the point, unless there's some good reason .
The tapering process can be tricky. I was started on 15 mg of prednisone for PMR last summer, and it has taken me this long to taper down to 10 mg after several failed attempts during which I tried to wean myself off too fast. I have found that tapering by 1 mg a month has worked well for me (so far), along with a variety of dietary and lifestyle changes. In another couple of weeks, I'll be going down to 9 mg and see how that works. I'm worried about the adrenal fatigue that many people have to deal with when they get down to the lower doses of prednisone. So far so good, though.
In his place I would continue with a very slow taper, the aim not being necessarily to achieve zero but to find an even lower maintenance dose. I was at or about 2 mg for several years and eventually about three months ago found my way to zero. I cannot honestly say that my life is any better at zero pred than it was at 2 mg. In fact a couple of pre-PMR conditions I'd entirely forgotten about have re-emerged (notably itchy skin). Otoh I seem to sleep right through the night more often. 🤷
We really are all different, and there are several possibilities for what will turn out to be best for your husband. At 5 mg and less there is absolutely no rush. He's done so well so far. 🍀
My personal experience is precisely that, not a prescription. All of last year, my happy place was 4mg/da with 20mg/wk MTX. Rheumatologist wanted me to taper gradually. Since Jan 2024 I have made the effort very gradually. Now doing 2mg/d 4 times/wk & 3mg/da 3 times/wk. Each incremental change has brought some joint pain, handled with Tylenol. This bothers me but I persist. I'd like to be pain free like last year, yet I want to be off Pred. A couple of months ago, I was ready to tell by Dr. to go and fly a kite. I am inclined to continue tapering. It will be an ongoing experiment for me. All the best to you both Piglets1.
Hello Piglets1. It has been approximately 6 months since stopping Prednisone. I wonder every day if I did the right thing. My Rheumatologist said as long as I didn't go over 5mg it would be safe. I don't remember what she said about how long I could do that. I decided to quit all together it was hard. Had to go back to 8 several times and start over. I wish you good luck in whichever you choose.
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