Hi guys, currently tapering on tortoise not hare method from 7mg to 6mg. Have been so well past 6 weeks or so and even had energy to do stuff other than just what I needed to😀
Yesterday and today I’m completely floored. Feeling really heavy and tired. Just fit for lying about. How long should this last? Need to work on Tues and wondering if I’ll be ok if I rest tomorrow too. Suppose it’s hard to answer. Started tapering 20 days ago... how long before energy comes back? Or is that a daft question? 🙈 Feeling impatient 🤪 thanks so much x
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Allsgrandso
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If I were you I'd go back to 7mg, wait a month or so and then try again. This is adrenal function territory and it does tend to take a few weeks to catch up with you. It doesn't mean they won't wake up - just they are protesting. If you have to work, it's a no-brainer.
Thanks PMRpro for your swift reply even though it’s not what I want to do 🤪 but I know you are probably right. I’m just wondering if this fatigue will lift on it’s own or if I stay at 6mg will I risk it getting worse and possibly a flare then too? I’m actually struggling to remember anything today I’m so tired!
At 7mg your body is still being told that the adrenal glands need to wake up - and that is the important bit. If you stick at 7mg for a month and try again it may work because they have started to get their act together and in the meantime you can function. It isn't saying you can't, just wait a few weeks and it may make all the difference. This really isn't a race - more haste less speed. And if you can't function properly you are probably a liability to yourself and to your work and colleagues!
Plus if I wait another month and begin tapering again, I’ll be going on holidays 3 weeks in and although looking forward to it I’m a total bag of stress about flying so need to be stable. Wanted to be stable on 6mg for that as holidays last year were a nightmare. I wasn’t diagnosed and in agony every night and morning ... it was awful. Really want to enjoy this year ☀️
In which case - stay at 7mg. You have no guarantee you will stabilise at 6mg, nor any guarantee that the fatigue will have resolved by then. Or do as DL suggests and use 1/2mg in the DSNS taper. It is far less of a change for your body to adjust to and if it works you can then try the other 1/2mg.
But you can "want" all you like. PMR has its own rules - and you can't dictate to it.
Agree with PMRpro about adrenals and going back to 7mg. Next taper why don’t you try just 0.5mg reduction- been there....but fortunately I wasn’t working!
Your body needs all the help it can get, so be kind to it!
Oh dear! Hello and welcome to running in luke warm soup. I’ve been stuck here for,ahem,a long time. At 7 mgs I mean, every time I try to reduce by even 0.5 for one day I feel unwell and the pains start. My solution to the fatigue is not open to you because you work. ☹️Basically it’s early to bed, early to rise and a siesta. If I stick to that and some pretty slothful weekends I hardly notice. I think it’s risky, well for me anyway, to reduce when you feel like this. I really think I might end up at the beginning again. So I am mindfully staying here until somebody brandishes a steroid sparer at me again. ( Personal opinion only).
Right so, back on 7mg tomorrow it is! Could be worse. Just one thing please, would you recommend trying to taper again in 2 weeks or is that too soon? If I wait a month it’s gonna be too near hols ✈️
You could try, depends on how you feel. But you can always wait until you get back off holiday you know! It’s a tapering plan.....and plans sometimes need to be amended!
Ohhhhh, bummer. After 6 weeks, that must be so disappointing and frustrating!
If it's related to the reduction (and not a flare) hopefully it will only last maybe 3-5 days, which is the length of time my withdrawal symptoms usually last.
How much and how often are you reducing by? Isn't the recommended reduction not supposed to be more than 10% of the starting dosage?
It’s not pain like I had before when I had a flare(also while tapering to 6mg) it’s just extreme fatigue so must be adrenal related as PMRpro suggested.
Last visit to rheumatologist was to taper to 6mg and to stay there for 6 weeks then taper to 5mg where I’m to stay until I see him in August. My starting dose was 15mg July 17
I can certainly understand your frustration as I am going through periods of extreme fatigue. Currently on 7.5 from 10/8.5/7.5 at monthly intervals and not having much fun. maybe I should go back to 10 (when I felt OK) and reduce 1mg strictly monthly and see. It's so debilitating and I have to work with this also. Catch 22! Anyway, good luck to you!
I would definitely consider going back up to last dose where you were well. That’s the advice usually from the aunties here. I’m back to 7mg and hopefully will be ready to rock tomorrow 🤞 very hard when you’re working, take care and hope you feel better soon!
Allsgrandso I was diagnosed with pmr in 2017 put on pred but think it got reduced to quickly had a massive flare up in 2018 which resulted in another 3mth off work sick and like yourself found the fatigue dreadful and difficult to cope with but tackling each day has it comes really gets me down has I like to be so active.
Oh I hear you Jura!! I was the woman cutting hedges, lawns, painting walls and ceilings! Walking, jogging, all go go 🤣 I have learned to take time now to read books and also got a gorgeous British shorthair kitten and he makes me sit. (Always promised myself one some day) I only work part time at least. Honestly don’t know how people manage working full time with this. You can have a few great weeks and then next thing BAM. Be kind as you can to yourself X
It does get tricky at this point, and as others have already said I would go back to 7 and stay there until you settle down again then perhaps reducing by .5. Would definitely rethink tapering prior to hols. One things for sure impatience won't help you, sorry.
Thanks Telian, I thought I was on the pigs back! Had it nailed and 6mg was gonna be good. Oh PMR puts you in your place doesn’t it... getting too cocky I was. Painted a wall last week, did a bit of gardening... how dare I!! Back up to 7 I go and hope that will suffice. You are right about tapering before holidays, I’m just going to leave it be for now and try and settle again. Hope you are well x
Sounds like the pigs thrown you off! BUT also sounds like you've got a plan to get it back on so careful cornering tactics next time eh! I'm okay thank you - you just have a great holiday!
Hi, I am interested in your post as I am about to go from 7mg to 6mg this week. I stayed on 7mg for a while as I was on a two week trip and didn’t want anything to happen while I was traveling. I am sorry that you feel tired etc. but I do know that the adrenals do have to get to work. I am not sure if you have GCA which is what I have, started with PMR. Good luck with your next taper.
I have been having flares every 4 months since this began in 11/2016. I have finally figured out it is all about the reduction of prednisone. ( I think) I was going very slowly about 1mg every two months. I did ok until I got to 6 and wham got hit with a big flare that is now been going on for about 3&1/2 months. In the meantime, I suffered a stress fracture (my first) and have suffered more pain than I would have thought a person could stand and still live thru it.
When this all settles, I am going to go up and down with the doses. Someone here suggested it many posts ago. I am at 8 trying to get to 7 &1/2. Some days I do ok with the 7&1/2 and some days I don't. On the days I don't do to well, I go back up to 8. In the past week I have tolerated the lower dose about 3 days. I'll see how this next week goes.
This is one miserable disease and is just maddening. I try and stay up beat and find the positives in all of this..
Oh dear you poor thing! I really feel for you. Maybe you should stay on the 8mg for a good 6 weeks until you are more stable and then start to taper? I know going down when you are not stable where you are is risky. And on top of that I’m sure the stress caused by your fracture hasn’t helped either. Mind yourself x
So sorry for your pain & suffering....I too tapered from 10mg to 9 mg, felt fine for 3 weeks & then had so much pain I had to ask the MD for sleeping pills to get thru it....did not understand that 'a flare up' would hit after 3 weeks....??? Had to go back up to 10mg....at least you are down to 7mg/day....that by itself is great....!!
Oh dear that’s terrible LMAR yes I believe from the wise ones here that if you have pain initially in the first week or so then that could be withdrawal from preds. Later on like 3 or 4 weeks then it’s usually a flare. Mad the way it goes! PMR does dictate to us, we really have no control except to listen for signs and try our best to taper if/when it lets us. I hope you are at least comfortable now on 10mg and will get tapering again when you are ready. Mind yourself x
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