Once you've found the dosage that works how long have you all stuck with it before tapering? It's so blissful to be without pain I don't want to rock the boat!
You are tapering to find that dose - the lowest dose that manages the symptoms as well as the starting dose did. Once you find the dose where the symptoms return you go back to the previous dose. Most people would then stick there for at least a month or two - but you have always to try a small and careful next reduction step or you would remain at that dose for ever.
Using the Dead Slow approach we go on about here you just keep trying another half or one mg reduction. As long as it works you keeo going.
Ok - slow tapering and pill cutting here I come! I got relief at 20mg - 15mg didn't work for me so I'll be interested in how it goes.
Eileen, I picture you in a study lined with books surrounded by monitors showing patients from all over the world buzzing in with their queries as you share your knowledge! You are amazing 😀
I'm sitting watching Swiss TV and Federer at the moment with occasional essays to read the Guardian online between sets...
Did you try dropping from 20 to 15 in one go? No wonder you had problems if you did!!!!!
I know. Federer whopping Dmitrov! No, I went up from 15 to 22 to 25 - felt dizzy, didn't like it so dropped to 20 (only been on 25 for 3 days, still too quick I think - bit of pain) - really working now with just a bit of awareness in legs so walking to strengthen. Pred may have its side effects to watch out for but for me the advantages are amazing.
Once all your symptoms are steady - and if it applies, your ESR/CRP too, you can think about reducing. But slowly, 1mg at a time really does work best!
And don't make the classic error: DON'T rush round doing everything you couldn't because you feel better! YOur muscles are still intolerant of acute exercise! Slowly does it!
Timely advice! Thanks. Hope you're watching Nadal and Muller -,incredible last set.
celia14153, I know that each individual is different. I was at 7 just come down from 8 mg and got my flare had to go to 30 mg to get any relief. Now at 22 1/2 mg reducing in 10% reductions or less. And will continue that same way till 10 mg, then DSNS. I was on the 30 mg for about 6 weeks, 2 weeks PMR pain free. I reduce only after being PMR pain free for 2 weeks. I will not reduce if not PMR pain free, my Rheumy and I do not agree with that, but I am listening to my body this time, hopefully with a good outcome. Moving forward with a smile on my face! 🙂
Of course - even Swiss TV which wouldn't normally hang around after 8pm stayed! Well done Mueller - another oldie at 34!!!!
And it sounds as if the thunder is back - perhaps better switch the TV off...
You ladies may be pleased but I am in deep depression as Nadal lost. So I am afraid I have had a large glass
Of wine probably not good with the pred but it was that or a bag if Percy pigs, If you know what that are. Sorry about going off piste but a little light relief from
Our PMR is good for us.
Federer is my idol, so economical and elegant as he moves around the court. But yes, sad about Nadal and sometimes a glass of wine just hits the spot. Pred can look after itself! And turns 😢Into 😀- 🎾
You tell 'em Michdonn - sounds like you have a handle on it! 😀
it depends ..... I've only been taking pred for three and a bit years. Sometimes I've been at the same dose for 6 months. Other times just a month. A couple of times I've literally felt "somthings changed" and it was obvious to me I could reduce another step. Other times I could spend days saying to myself "I'll reduce half a mg tomorrow" but tomorrow never comes.
For me It seems to depend most on where the pmr is up to, but also very much on activity levels and how well I'm pacing myself.
There came a time when I found I could walk several km and feel the stiffness born of exercise rather than the pain of pmr and wondering if I had energy sufficient to walk home.
On the other hand I overdid use of my hands and found myself having to increase the pred for a couple of months until I could open marmalade jar for breakfast again.
I did surprisingly well during coronary rehab. Supervised exercise at appropriate level with lots of monitoring, the half anticipated flare didn't arrive. Once I had regained some fitness and was stable I could reduce easily.
I find things that get my blood flowing seem to "wash things out" whereas things that need strength (like carrying shopping in from car and lifting onto bench) can knock me about. Strange really.
Just thinking out loud ... having written "stable" that's probably the time I try to reduce if symptoms have receded. I guess I tolerate a bit of stiffness so I know where I'm up to. If I have no symptoms I don't know how much excess pred I'm taking and I also can't feel whether today is better or worse than yesterday.
It feels like being on a tightrope. I'm good at 3mg/day at the moment. Thinking of 2.5 but not quite ready. For example, yesterday I got ambitious and did a bit of chain sawing. This morning (before pred) my arms are fine but fingers a bit more stiff than usual. It will be Friday before I attack another tree. I don't propose that everyone does some chain sawing, its more a case of knowing the effect each activity has, and thus managing how much I do.
In the earlier stages, on higher pred, I didn't like the side effects so probably reduced activity to allow pred reduction. Which is of course a bit of a downhill spiral as one loses fitness and muscle tone. Now, on lower doses, I prefer to be active, while avoiding flares. Its a very different feeling.
More of a roller coaster than a smooth scheduled reduction with defined times for reductions. I'm not a "paint by numbers" sort of person and I really don't think I would have reacted well if my (very good) doctor had tried to give me a schedule so of course I don't know what alternative approaches are like.
Thanks Julian, that's very helpful. Getting a fix on what other people do and how it works for them a) makes you realise how very much you are not on your own and b) gives you tips. You have got so low - and are doing so much - that's good to know too!
celia14153, I do not know if I have a handle on it, but I am trying to work through this PMR mess. I will know when I get to what ever the end is. Just moving forward with a smile on my face! 🙂
There is nothing wrong in using DSNS at higher dose. If you don't want to go thru long version, pick (or create) shorter version, for example you do :
3 days old dose 1 new, 2 days old 1 new, 1 old 1 new, 1 old 2 new, 1 old 3 new and you are done... It helps body to adjust and it is easier.
If you are at the higher dose and just starting, it helps if you stay at the same level for five-six weeks to clear the backlog of inflamation. After that, reduce no more then 10% of the dose each time. Stay on new dose until stable, or at least 2 weeks, before attempting next reduction. When you reach 10mg or so, make sure not to reduce more then 1mg at the time. Use DSNS method. When you get down to 7-8 mg level, slow down even more, switch to 0.5mg reduction steps. This level is critical for most of us, because it is a level when your adrenal glands need to "wake up" and start producing cortisol. They were inactive while you were at higher prednisone levels.
I don't know your present dosage but over a couple of years I've reduced mine from 10 down to 4. I started at 100 for only a week or so then reduced 5 per day until I was at 10. I've tried to go below 4 but when I do I get night sweats and headaches. I can handle the head aches but I've lost some vision in my left eye due to a false negative when tested for GCA and don't want to lose any more. 4 seems to be my low number.
Thanks Nick, I have just started and learning a lot from this forum. I did wonder how long it takes for the pred to work and when best to start tapering. This timetable and the adjustments that will be necessary make sense. Also, I'm recovering from an op and movements have been restricted. Good from a resting point of view but it will be interesting when I start exercising more. I like the idea of sticking with 20mg which works very well for me while I find out!
I'm currently on 20 but your experience sounds horrid, and a warning not to rely on tests too much when your body is telling you a different story. Hopefully we're teaching our GPS as much as we are learning ourselves. 4 is pretty good if people find 3 a sticking point. I hope it keeps your symptoms under control. Thanks for sharing - it is so helpful.