Increased my Pred from 8.5mg to 9mg last Monday ( following a drop from 10mg)
Was on the 8.5mg for 14 days but had a flare from about day 10.
Symptoms did not fully go away ( apart from the fatigue which i've had for a long time..it ebs & flows from tired to have to sleep after normal activity)
Yesterday morning I made a dynamic decision to go back up to 9.5mg and today I struggled to rouse even more than normal, I have been dizzy, foggy head and sweating ( deep joy).
GP has been trying to help with the extreme fatigue so I can get back in the workplace.
Having been on the 10mg for months we agreed to give a drop a go. It's not worked.
He is on holiday so will contact him on his return.
I'm presuming today my system is reacting to an increase in Pred again.....or....is it?
🤔
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Naim1
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The fatigue is a part of all autoimmune disease and for some is as severe as that found in ME/CFS (chronic fatigue syndrome). Have you had Covid at any point?
What you are describing isn't typical of PMR on a dose of 9-10mg because although it could be adrenal insufficiency, it shouldn't be that severe at that sort of dose and the symptoms aren't really PMR-ish. So it may be there is something else going on.
However - if your GP finds a way of improving your fatigue, he could be on the way to making millions!!!
We were going to see if a drop had any detrimental effect on me...if not continue with a taper ( a bit slower) to see if I could continue in that trend to see if PMR symptoms had burnt out, to get me off Pred...to improve the fatigue....to enable me to get back into work.
But it's not worked. 😔
Silly me!.... was worth a shot.
Clearly PMR likes me & does not want to pack up & leave home..... for now!....despite my eviction notice!
Believe us - you aren't at a year yet, it is exceedingly unlikely PMR has gone away. Even optimistic studies found only 1 in 5 were off pred in a year - and real experts would probably dispute it was PMR in the first place. A third may manage it by 2 years. Half take more than 6 years. And while everyone thinks they will be the one that bucks the trend - it is rarely the case.
Who knows… but it could be other things as well. As PMRpro has asked have you have Covid recently - been without fully realising it. Not everything is down to PMR…
I did have Covid last month and to my surprise I got over it in about 5 days....I was astounded.
Not sure if it could be an overspill from that?
Being immuno suppressed I thought I would not be able to get rid of it for ages?
If I get colds, chest infections they normally last for weeks.
I will see how I get on in next few days on 9.5mg....see if things settle down.
I'm still waiting results for my last lot of bloods for Vit D issues, Any thyroid issues or Addison's, however not sure how Addison's can be tested anyway if my adrenals are in hiberanation?
If this is as good as it gets for the medium to long term then it's crunch time with my employer.
Will see if they can offer reasonable adjustments and if so, am I able to cope?
Worrying times at the age of 54.
Thanks for being there for us all... I hope you all manage to get a rest!🤞🤞
P.S....I found another video from Dr Berg where he totally admits adrenal fatigue is not recognised by the proffesion, however his take on it is folk don't just wake up with things. He believes there are things that go on & build up with the adrenals but we are not in tune to recognise it. Which is a reasonable point of view...but it is just that, his view ( right or wrong).
Hi Naim, just wanted to say that I managed covid well but now have post covid breathing issues which came on about a week after \I tested negative, so you never know, it may be covid after affects. Hope you manage to settle back to some kind of equilibrium soon.
Hello dear Naim1!I hope you are feeling much better soon🌹
Did you taper from 10mg to 8.5mg in one go?
I have to taper in v small steps. I wouldn’t manage such a drop. I am currently taking 8.75mg...a drop of .25mg from 9mg. And after a couple of weeks or so, I plan to taper another .25mg.
What was normal pre-PMR and pred is a whole different ball game. My daughter did a big family party at the end of July - far more company and activity than I am used to. I sat around most of the time but it caught up with me during the night!! Far too much in the way of carbs thanks to an amazing VW campervan themed cake from my brother!
I just DON'T do standing - always seek a seat. If anyone wants to talk to me, they may approach the throne!!! I was the birthday girl - first ever cake he's made for me!
Hope that is enough of a rise - we'd say add 5mg to the dose where you flared. Don;t go back to 9,5mg though - at least 10mg and that might not be enough.
The aim has been to get to a point, where it can be safely stated, ' This is as good as it gets' until fingers crossed, It burns itself out ( if i'm lucky) which I now know could be years.
However every time we get to that 'point' of ' Good as it gets' ....I have gone backwards due to tweaks.
So I can't see my Occ Health unit ( Yet ) to get back in the workplace & discuss reasonable adjustments with a final medical report to support decisions as we have not reached ' as good as it gets'.....yet!😩
Such a shame 💐If it was me, I would go to 10mg for a couple of weeks and then reduce to 9.5mg. In the big scheme of things it's just a blip. Then after a couple of weeks or so I would taper to 9mg. But that's just me...we are all different. I'm so keen to get off these meds but I still have PMR - v much so: so I'm trying to do it slowly.
Agree with others, too big a drop. I have adrenal insufficiency from long term pred. No more than is 10% of your dose is recommended which is 1mg. You've created a steroid hole now which is why your body is still complaining at 9.5mg. It's playing catchup now. I would go back to 10mg and start again. Covid will have taken it out of you. Once you're stable a smaller drop of 0.5mg every 2 weeks would be better so your body doesn't notice and grumble too much. I'm currently on 9.5mg trying to taper to 7.5mg. I'm doing 0.25mg a week. I do have a host of other health conditions though so we'll have to see if I get there. The key is to get through a taper as easy as possible but if you're having to go back up often then you're doing it too fast or your body just wants that higher dose full stop.
Do you mean 1/2mg every week? We'd say that is too fast at this stage. It can take at least 2 weeks to realise the new dose isn't quite enough. And we feel 1/2mg every month is plenty!
I think I said 0.5mg every 2 weeks? I just know that certainly no more than 10% of your daily dose is recommended. But yes in our case the slower the better tbh! I do 0.25mg every week atm but may slow that down as I get lower. I'm just impatient lol but as we know.. The tortoise wins the race 😊
Sorry - you said 0.25 per week, brain death!!! Even so, changing every week can be confusing - when you realise after 2 weeks it is too low. when did it go wrong?
I split my pred into 3 doses throughout the day. I'm currently dropping my morning dose by 0.25mg then the next week I'll drop the 1pm dose by 0.25mg. So each dose will get 2 weeks on the drop. If that makes sense? So far I've been ok but as I said as I get lower I may need to slow it down more. My aim is 7.5mg daily.
That's not the way many do it, but if it works for you fair dos.. but just be aware as you get lower you may need to leave longer between each reduction.
I hear you but I have sai too so hence the split in doses. But yes I'm aware I may have to go super slow when I get lower especially as I've on pred for 10 years now.
Mr hubby also has these symptoms he is 59 and has had to take a period of time off work (self employed). He is trying to cut down the pred currently on 10mg. He says can’t think clearly, literally couldn't work out how many slabs needed for a job, which is second nature, also has the shakes and sweats and says his sight seems to be affected(has told doc about this).
Sorry to hear about issues your hubby is having- unfortunately brain fog is all part and parcel of any autoimmune illness… as can be the shakes/sweats. Problems with eyes can be a side effect of Pred….but it does usually settle as dose is reduced.
But make sure he doesn’t try a and reduce too quickly, as he’s only been diagnosed about 3 months to be down from 20mg to 10mg in that time is pretty rapid, plus adding in his physical work.. he maybe need to ease up on the tapering for a while.
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