Posted , 18 users are following.
I am currently reducing from 8mg to 7mg Pred by the dead slow method (previously dropped by 1mg every 4 - 6 weeks having started at 20mg). What I would like to know is, having eventually got down to 7mg for a whole week do I then start reducing to 6mg or do I stay at 7mg for a couple of weeks or so before doing so?
0 likes, 27 replies
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faye______00403 fran2498
Posted
Stay at 7 for at least a month and then start reducing by one/half of 1mg.
You can't rush the reduction or will just wind up going back up when pain
comes back. There is a lot of info on this site about slow, slow, slow it
the way to go.....
3party fran2498
Posted
I am not a doctor, and have never even played one on t.v., but I have a strong opinion about the right answer to your question. My answer is based on the experience of following the instructions of my rheumy, whose dosing regimen is not typical. My answer: Do not reduce your dose after "a couple of weeks." Do it after FOUR weeks. Do it every four weeks, but reduce from 7 to 6.5. After another month, go down to 6.0...5.5....5.0. At that point, consult your physician. Mine has advised staying on 5mg for ever. He says that with that regimen, he has never had a patient experience a relapse, which commnly occurs in patients who have stopped taking it altogther. He would approve of reducing from 20mg by 1 mg every 4-6 weeks, but below 10mg he had me reduce by only 0.5mg. He believes that reducing as slowly as that, then staying on 5 mg, is they key. So far, he has been proved correct in my case. I hope this helps.
alley2 3party
Posted
Hi I like the reduction method fro 20mg below I hope to get to that. At present I'm on 37.5mg have been for a week going to stay for 4 weeks on this amount but not sure on how much to reduce after this I got down to 27.5 last time but got a flair that's why I'm back at 37.5.
1951grumpa 3party
Posted
Are there any long term negative side affects of the 5mg dose forever? I've made it down to after five years with many flares. I was probably going down too fast before.
constance.de 3party
Posted
At last a doctor who really seems to know what he is talking about.👍
linda17563 3party
Posted
Wish all rheumies were like yours.....and the fact of staying on 5mg , which I have read is a "maintenence" dose makes a lot of sense......as Eileen has often said, it is not a race to get to zero!......
jancorb 3party
Posted
This sounds very sensible, I've had 3 flares up to now, so am now reducing by half a mg. to 7.5 instead of one mg reductions. I get to 7.5 on Tuesday and will take your advice and stay at that for 4 weeks. I'm going to print this for my GP, he is worried about my inability to reduce down.
Michdonn jancorb
Posted
Diana112 fran2498
Posted
julian. fran2498
Posted
its a bit like bus timetables. No matter how good the timetable the bus is always late. And never early. We have no control, we catch the bus when it arrives.
So it is with pred reduction. Its no good trying to reduce if the underlying disease is lurking, ready to show its face. We have no control over it.
At high levels of pred I was keen to get rid of the side effects. At lower levels I'm keen to not have a relapse or flare.
I think I was stuck around 6mg for about 6 months. But here I am now just about on 2 1/2mg.
I'm naturally impatient, but what's the hurry?
I'm not at all sure how it works for others but for me it seems to be a case of read the signs. Like knowing that I'm a bit less stiff than a while ago so it must be near time to reduce. And of course as I do reduce recognising new aches and pains.
In consultations with GP she is always keen for me to reduce pred but also recognises its a judgement not a bus schedule.
kathy67492 julian.
Posted
EileenH fran2498
Posted
I would wait for a few weeks before starting again - just to be sure and a slow reduction at this stage makes it more likely your adrenal function will start up successfully.
And hoorah about that doctor who realises slow is the way to go!
3party - the DSNS approach referred to doesn't even do 1mg or 0.5mg overnight - it takes 4 weeks or more to achieve it. But I also suggest 0.5mg spread over the 4 weeks. Most doctors aren't as enlightened as yours!
humpalumpa EileenH
Posted
Hope this message finds you well, after what seems like a lifetime and in conjunction with your DSNS ( of which my GP was extreamly immpressed ) routine , I am now down to 1 mg perday, and have been taking this dose now for one week , im coping well and am only experiencing stiffness and poor mobility when i get up after a long sit, or out of bed in the morning , so i feel proud of myself for sticking with it ,and so thankful for all your knowledgeable advice, i did have a flair about three months ago and i put my self back on a 5mg dose stayed on that for about six weeks then started my reduction plan over again.
My question is, how long do i stay on 1 mg, and how would i reduce hopefully to zero pred , my gp was very non committal and more or less said "consult your forum as you have been given excellent advice which has worked for you" so Eileen im asking your advice again please, i realise we are all different and can only reduce to our body's needs but i would really appreciate any info you can give me
Thank you once again
EileenH humpalumpa
Posted
Oo-er - now there is a question! How long is a pice of string!!! It does sound as if you MIGHT be one of the people for whom a very low dose is all that is required - but you are talking about slight signs the PMR might still be there so I'd be disinclined to be too precipitate!
For a start I'd give 1mg at least a month, maybe more. Then do a DSNS with 0.5mg and see how you go. And if it works do a very slow DSNS for that other 0.5mg. But don't be in denial of those niggle you mention start niggling harder. 1mg is such a low dose I'd take it for life rather than risk it all coming back!!!!!
Anhaga humpalumpa
Posted
hi Humpalumpa, I too am at a low dose only 1.5 but I've got a feeling this low dose is probably what I've been aiming for during the past two years, not zero as I had fondly hoped. My new goal is to stay here until even the niggles have gone away, continuing to do everything I can to live a life which encourages healing.
Juno-Irl-Dub Anhaga
Posted
Hi Anhaga, this issue is relevant to me also. I'm currently working down from 0.75 to 0.50mg. using Eileen's DSNS method, reducing by a quarter of a mg. at a time.. . . Very few 'niggles'.
Like yourself, I have no problem staying on a low dose - In fact I think it may actually be a good idea - but with my bone densty readings it may be better to aim for zero. Any views?
Kind regards, J
Anhaga Juno-Irl-Dub
Posted
Hi Juno, I think I read somewhere that they've no idea what level pred continues to affect bones, but I do know the worst damage occurs early on, at least in PMR when we are generally never at a high dose, at least not for long. I'm trusting that because I was still able to improve my bone density during a year when I was still above 5 mg for about seven months, this low dose is not going to have any measureable effect. I am really, and have been all along, right on the edge of not taking enough pred, so I know it would be foolish for me to push any lower at this time. I'm almost certain what I felt when trying to get to 1 mg was more PMR than pred withdrawal. But I will try a reduction again once the niggles have faded away, which I'm sure they will eventually. I think it's brilliant you are down so low - nearly zero! Probably I should try the .25 reduction next time. Right now I seem to have a number of other painful conditions so in any case I'll wait till they are better.
EileenH Juno-Irl-Dub
Posted
The dose youa re at now is unlikely to have a significant effect on bone density. It's felt the worst changes occur in the first 3 month, which is when you are likely to be at the higher dose for you, which ever you hav, GCA or PMR.
And if it means you are better mobile that is likely to outweigh the tiny dose you are on. Immobility is the biggest predictor of bone density loss. Even if you are sedentary for 8 hours a day - that is not important if you exercise for an hour, even "just" walking - lovely weight bearing exercise!
Juno-Irl-Dub Anhaga
Posted
Sorry to hear about your other conditions. I hope they improve soon. Ongoing pain is no fun.
Re. trying the .25 reduction, the real hassle is cutting the half mg. tablets and then part of them disintegrating. Lots of waste, big quarters, small quarters. . . .
Re. PMR and high doses of Pred., you're right in saying we're not at a high dose for any significant period. I don't think my high Pred. had much to do with diagnosis of OP as I tend to blame dietary issues eg. poor protein intake.
Keep well, J
Juno-Irl-Dub EileenH
Posted
Thanks Eileen. I have to say that mobility isn't a problem - I'm a bit like the Road Runner, always on the go but with a quick nap in the afternoon. My mother used to tell me that I made the central heating boiler work harder as I created such a disturbance of air in a room (never staying still!). . . .
I'm seeing the rheumatologist at the end of this month and I'll see what she has to say. I have this idea that staying on a really low dose for a few years may have a protective effect against relapse . . . . But that's only my head which often gets things wrong. . . .
EileenH Juno-Irl-Dub
Posted
Juno-Irl-Dub EileenH
Posted
EileenH Juno-Irl-Dub
Posted
I didn't say it was - just EVEN if it was...
humpalumpa EileenH
Posted