Hi, it’s many years since I wrote about my own symptoms here but I do follow the posts that interest me which is Steroid reduction. I have been reducing Prednisolone for over 14 years now and have struggled, mainly because of fibromyalgia pain as well as the PMR. Over the passed 5 or 6yrs I have reduced from 5mg to 3mg daily in 2017 and then decided to stop reducing until I felt my body had caught up with the adrenal shift that must occur when reducing.
After two years I decided it might be time to try to reduce from 3mg daily to none. Finally I started on the 6th of January this year and made a 6mth chart following the DSNS method. By the end of July I was down to 1mg a day and feeling ok. Then I made another chart to reduce from 1mg to nil by the end of the year. I’m currently on 2mg per week, Monday and Thursday.
I feel I’m beginning to fluctuate with fatigue mainly and extra aches and pain. Which on the whole seem to be managed with pain meds, rest and activity, along with a heat pad which tells me this is most likely fibromyalgia pain. It’s occurred to me that I may need to stop taking Prednisolone all together at this point, as this may be why I’m experiencing these fluctuating symptoms. Having never reduced so far before, I wondered if anyone could help with advice on whether to carry on my schedule of 1mg twice a week for two more weeks and then finally 1mg per week for a month. Or could I stop now and hope this fluctuating fatigue levels out over the coming weeks? Thank you for reading this and look forward to your insight on this matter.
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Avrael
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Hello there, I too have had Fibro over the years and latterly GCA. I found this dose range difficult while my adrenal function has normalised and Fibro certainly became worse at this time. There is no easy way to do it and it is so frustrating to be at a low level which ought to be the easy last little bit, after all, it is such a small number isn’t it? Whilst fibro tended to be more prominent at this time, I suspect because of the stress of it, Pred was no help directly. If you’ve been on Pred for so long, I expect this last bit will be quite protracted because your adrenals will have been put to sleep for so long. Anyway, I was on under 1mg for a year before getting to zero. My feeling is that you need to go really slowly. From 3mg I did drops of 0.5mg daily every 10-14 weeks. The last under 1mg, as I said, took a year with the longest stint being at 0.5mg. This is such a low dose, why hurry it now? There is no easy way and time will tell. I would also try to get a Synacthen test to check to see if your adrenal glands are still able to work. I had one at 4mg and 0.5mg. It is a handy to know, though it doesn’t tell you if they will work efficiently all the time, but it’s a start.
At such a low dose that seems to be working pretty well I would just carry on as you are doing, no rush! I do know people who got to 1mg every couple of days and were fine - none was not and the PMR symptoms returned after a few months!
I do wonder whether the fact that you are taking 1mg on 2 days only during the week - the symptoms are withdrawal pains on the days you don’t take anything? As you say you fluctuate with fatigue etc - does that correlate with the days you don’t take Pred? Just seems an odd way of going about things, but I guess it’s under medical advice.
You could try taking 0.5mg on alternate days to see if that makes any difference - but to be honest 1mg or 0.5mg per day is such a low dose - and if it gives relief why not stick to that - many would see that as a success story.
Hi, Thank you for your reply. Since posting this morning I have made the connection with feeling really tired on the last two Thursday in particular. And I remember a couple of weeks ago I was extremely fatigued on a Tuesday which would have been my first full week + 1 day. So yes it could be my body is missing that extra 1mg per week. Seems so negligible but it obviously does make a difference.
I’m thinking that I may pick up over the next week or so, as I have before, and maybe stay on 1mg twice a week until I start to feel better on a daily basis and then decide when to try reducing to 1mg per week. It’s hard to believe the body can miss such a low dose but the proof is in the symptoms so to speak. Thank you for your help, it’s good to be able ask those with experience as you get a better understanding what to expect and what you can do about it. Xxx
Negligible yes in isolation - but at that dose it is a massive percentage change.
A few months ago Prof Dasgupta said he often keeps patients at 2-3mg indefinitely as it reduces the risk of relapses. If I got to 1mg/day - I'd take it and run! Never mind 1mg every second day ...
I'm on 1mg a day Pro...been here since September. I did mention round that time I had a bit of R hip pain. That resolved itself within a couple of weeks. Now wondering how long I should hang around at 1mg? I'm absolutely symptom free, no pains. Don't sleep brilliantly but that's all
Thanks for your reply. I’m glad to hear you’re symptom free. Like you I don’t sleep very well, but not sure if that’s because of the restrictions imposed on us through COVID-19. Also I have found that symptoms can disappear as your body adjusts to lower dose. I think it’s wise, as others have said on here that, at such low doses as 1mg not to be in a hurry. I’m still undecided what to do but I think to discuss it with my doctor so she’s aware of where I am with my reduction plan and ask her advice on how to proceed. And probably a good idea to have my bloods done too, to see my inflammation levels. At least then I’ll have an idea if any pain I have is PMR or Fibromyalgia. Thanks to all who’ve replied to my post. It does make a difference to hear what others are experiencing and how they’ve coped. Xx
A neighbour insists our pacemakers mean we are invincible! Don't think he quite understands how they work!
Is B also Covid-protective (so to speak)? I'm O+ve (common as muck) but OH is B-ve which can be a bit squeaky if you need transfusions! Nice if it is useful for something!
Yes you’re right it is a massive percentage and that is where I was uncertain at what to do next. I’ve reduced methodically over time but the lower the dose the less easy to reduce by the recommended 10% of daily dose. But where do you go from there? There’s no information anywhere on this particular problem. The only time we come across it is when we get to the point of reducing from 1mg daily to reducing a weekly basis, and I dare say each person is different. I do wish there was something to help us understand the various possibilities at each stage of reduction. Thanks for taking the time to reply it is appreciated.
As I see it the DSNS approach and going via the smallest you can cut the pills into is one reasonable system. 1/2mg is possible - doesn't need to be accurate, just smaller than the last level. Then from alternate days of the smallest dose and zero you add a day of zero between dose days very slowly, repeating stages a few times before going to the next level. At some point it has to be so low you can say time's up. But it also allows you to stop at the point that works better than the next level.
It is a way of reducing the dose more gently than just going from every day one dose to every day the new dose which for a lot of people is too sudden. I developed the idea together with others based on the idea that A Swedish gentleman Ragnar had used the idea at low doses, below 5mg because he couldn't get much lower 1mg at a time so spread the change in dose over several days. There are other versions as well.
Thanks Av. I did reach 1mg earlier in the year and was fine.....then I went down by .25mg using pill cutter to halve a 1mg tab then got a quarter tab breaking the half by hand. But now from what you say I decreased far too quickly. Went back up to 2 stayed there for 3 months then 1.5 for about another 3 months then down to 1. Will take your advice and hang fire. Thanks 👍😊
DSNS is the method I learned on here. “Dead Slow Near Stop” it involves creating a schedule to reduce steroids very slowly. PMRpro an ambassador on here may be able to give more details on DSNS method.
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