Posted , 17 users are following.
Ive been on preds for about 5 years and have finally got to my target of 5mg and feel over the moon.
Its been a rough journey with many relapses along the way.
My new target is now to reduce further but each reduction will now be a greater percentage.
What is the best method of doing this please as I dont want any relapses if I can help it and set myself back as at 5 mg I feel is a great accomplishment.
Thank you so much
1 like, 16 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
constance.de julian99981
Posted
Congratulations Julian! It's good to reach 5mg, isn't it? Don't rush any reductions - the slower the better. I've been on 4mg for over a year and I don't consider reducing.
EileenH julian99981
Posted
Well done!!
The dead slow approach was devised to deal with this problem:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
You can slow it down as far as you like - simply starting with more days between the new dose days - and it also helps at this level to do 1/2mg at a time as well.
One top PMR rheumy in the UK likes to keep patients at 5mg for up to 9 months before continuing the reduction and finds that makes the onward journey easier. Whether one needs the full 9 months remains a question!
patricia43291 EileenH
Posted
This is probably a dumb way of thinking, but, if a new PMR patient were put on 5 mg to begin with, could that be enough to relieve the symptoms? And if not, try the DSNS method in reverse, increasing until they reach a point where there is no pain. Assuming the degree of inflammation is different with everyone, why start everyone out at the higher dose?I guess, we don't know what it is, when it first starts to show up, so perhaps by the time we see the rheumy, it is unbearable, and they go high on the pred.Maybe I just answered my own question. Whatcha think?
EileenH patricia43291
Posted
It is highly unlikely it would work well and the recommendations are that the lowest effective dose in the range 12-5 to 25 mg be used. I have come across a few people who were started at 10mg and it was OK but then they struggled to get any lower. By using a slightly higher dose the existing inflammation is better cleared out before starting on the reduction. It is very unusual for less than 15mg to have a good effect. The dose is one that is likely to work for most people without being too high - there are a lot of factors that are important including the activity of the underlying autoimmune disorder and the amount of the oral dose the patient absorbs which can be anything from 50-90%. Active disease and low absorption mean a higher dose is needed. And there is no way of forecasting that.
When you start low it may not be enough - and when patients see no result they may become unwilling to take steroids because they are often scared of them. One of the most convincing reasons for compliance is when they see a good result quickly - that makes them more willing to accept the side effects they may suffer. A study found that a dose of 12.5mg worked for 75% of patients within a month. My 15mg worked in under 6 hours. I know which I'd prefer! One of the characteristics of PMR tends to be you get a result in under a week with 15-20mg, which rarely happens with other forms of inflammatory arthritis so it is another building block in the diagnosis process.
Michdonn patricia43291
Posted
Patricia, I know we are all individuals and each case is different. About two years I had a bad flare, my Rheumy increased my dosage very slowly up to 20mg, at that point I could not walk and had to use a wheelchair. Still tapering from 30 mg. Three months ago I had another flare , I increase quickly up 20 mg the level that control the inflammation, stepped back down to 5 in 4 day 5 mg steps. I stabilizing on 5 before I start reducing again. I feeling is you have to have get the inflammation under control then worry about reducing. The DSNS is normal taper method, it works! Good luck on your PMR journey. Stay positive, active and try to smile. 🙂
patricia43291 EileenH
Posted
Thank you for explaining it, again.What a strange disease. The more I think about it, the stranger it gets.
susan43406 julian99981
Posted
Congratulations on getting to 5mg. I'm on 8mg but plan to go really really slow when I get to 5mg. To be honest I think there's no rush now at that level, better to be safe. I intend to drop by 0.5mg using dead slow method and then stay at that new dose for a month before trying to drop again. I understand the adrenals don't always 'wake up' and going this slow gives the best chance. Of course the PMR will dictate if we can reduce any more anyway but good luck with it . Be happy - 5mg is great!
Tinapoly1 susan43406
Posted
My endocrinologist told me that the prednisone has shrunk my adrena gland down to nothing & once off prednisone he said it takes a full year for the adrenal glands to grow back to normal size & function.
BettyE julian99981
Posted
Having had two bouts of PMR ( 3years and 5 years with five years in between ) I really am sympathetic to your hopes and ambitions but please don't set yourself up for disappointment and frustration by having specific targets. If you are comfortable at 5 mgs. there is not that much hurry to reduce and your body might take some time to take over producing the cortisol that the pred. has been providing and if you do try to rush it you are more likely to " fail"
I know that there is a link on here somewhere but I can't find it at the moment. However, if you search "dead slow and nearly stop" you'll be able to read a system that has worked for many of us.
Best of luck.
BettyE
Posted
I see that Eileen has put the ink up for you
Elijo julian99981
Posted
My advice would be to NOT to rush it, go VERY slowly like reducing 1/2 mg. at a time (you can cut the ones in half). Keep that dose for at least 2 weeks, then reduce another 1/2 mg. That type of schedule worked for me when I was down to 5mg. Finally after a few months, I had conquered PMR which I had for 2 1/2 years. It's almost a year now without PMR and in that dept. I am doing great! Not that I haven't developed other medical problems unrelated to PMR; I guess that is life.Do NOT be in a rush, as others have cautioned you. Don't forget that we are ALL different! Good luck! Elinor
Twopies julian99981
Posted
im at 5 after 21/2 years; i use the dsns method. i plan to stay at 5 at least until fall. i just got to 5 about a month ago.
Michdonn julian99981
Posted
Hi Julian, congratulations for joining me at 5mg. I plan to use the DSNS method decreasing at a half mg steps. EileenH has put the link up for you. The method works I am down from 30 using it. I had a couple of flares along the way, always my own fault. Good luck on the rest of your journey, stay positive, active and to smile. 🙂
diana21296 julian99981
Posted
I agree with you....
At last I have reached my
target of 5
And now I am feeling a bit
more alive
And there I will stay while
the body adjusts
I won’t try to hurry and this
is a must
I’ve been like a tortoise or
even a snail
I’ve dropped really slowly so
as not to turn pale
I don’t really care if I
never get off
As long as I’m coping and
don’t feel too rough
And I’m cautiously hopeful
that here I can sit
And if that’s the case I’m
not worried a bit!!
patricia43291 diana21296
Posted
Thanks for that......love it.