when I’m reducing .. slowly.. half a mg every 3 weeks.. I never have what is described as a flare! I can still lift my arms above my head for example!!!
but I just want to lie on the sofa!!! My eyes feel bleary.. more anxiety..!!sweats.. sudden hot cheeks? Sometimes shoulders ache in night a little ..
As for my hot throbbing knees and feet at night.. that continues!!! I’m seeing a specialist in the neurophysiology team at the Royal Free in Jan. it has been said it could be connected to pmr/ predisolone. ??
Am also trying to see Charlotte Wing at St Albans.. highly recommended on this site.. but Gp not able to refer to a specific rheumy!!! Someone in the team!!! Honestly! Wait till Jan 11 th if not heard by then! The rheumy I saw discharged nexsaying I was doing alright!!
Just got the PMR Newswire!
so healing to be reading about stuff that others don’t understand.
I am now on 7mg having reduced from 15 in July 2021 .
onwards and upwards !!!! But not much fun!!!!
Written by
Bedwell
To view profiles and participate in discussions please or .
At 7 mg you may well be into the zone where the adrenals need waking up. With some of us the fatigue hits later (I was at about 4 mg) and I've read of others a bit higher than you are. I think it relates in part to how well an individual metabolises the pred. I feel I must be a lucky one who absorbs pred well as I've managed at lower doses most of the time; even when handling a major flare I didn't have to go higher than 10 and that for only a few days. But there are others who do need more, and it could be that although the PMR has been well controlled you might need to stay at 7 and not reduce for some extra weeks while your adrenals slowly get the message that they need to start producing cortisol again. Increasing pred is not the solution here, of course, even though it would give you more energy. That would merely postpone the inevitable. However, if you find things don't improve, you need to discuss with your doctor. There may be other factors in play as well. In my case it was a matter of low iron, and there can be other causes of fatigue, not just the sleepy adrenals.
Hi so sorry Iv not contacted you. Iv had another bug wiped me out! I’m soo tired and lethargic. Blurry eyes are something I get too. I’m still on 8mg they say it’s tougher in winter and Xmas to decrease so I’m waiting until January to gon7.5 mg. I don’t think anyone really helps with pmr except here. No one really gets it. Or at least that’s my experience. This site is my doctor. I’m hoping the next reduction goes ok
I so agree with you Uglow! This wonderful site is my doctor. The only people who can possibly understand PMR are fellow patients. I am lucky to have a brother with it so we have wonderful "have a good moan" conversations from the opposite sides of the world (he is in Wales, I am in Tasmania). All the best.....
Click on the "Chat" option, and you should be able to find Uglow's message to you.
Morning, I did the 0.5mg taper monthly. I managed to get to 5mg then a mini flare. Sadly, GCA symptoms too. I increased to 10 for one day, then 9, then 8 then 7mg. I then started Dorsetlady regime. 5 Weeks Plan slowly introducing New Dose. Currently week 3 and seem to be doing okay.
Exactly three years since diagnosis. Seeing my Reheumatologist in March. I will tell him I do not want to take the Methotrexate.
I would say the tiredness and flushes are adrenal related. You can also get upset tummies, mood swings and feel quite dreadful too. I would reduce using the DSNS method, meaning it takes about 6 weeks to get to the new dose then stay there for a fortnight before reducing down again. From experience you need to be really patient from this point onwards and listen to your body. You will have good days and bad but don't do what I and others have done and get over keen and reduce faster or by more than 10% during the good phases. Read up on the signs of Adrenal Insufficiency too if you are unfamiliar with them. IMHO this stage is as difficult to negotiate as treating PMR itself, and sorry to say it, but your PMR may still not be fully in remission yet if you only started this journey 18 months ago. The tortoise definitely beats the hare with this one!
I don’t quite understand! You say 6 weeks first and then 2 weeks?? I’ve been doing 6 weeks 1mg. But doing that by doing half a mg every 3 weeks! Isn’t that the same reduction? Anyway will stick to 7 for 6 weeks. Then what? Go to 6? Or 6 and a half? All so complicated.. I have tried to have adrenal blood tests.. 3 times! Returndd as not enough blood taken.. or labelled in sufficiently!!!!
if you use a slower taper it tales approx 6 weeks to get from current (higher ) dose to the new (lower)... then stay on that new dose for 2 weeks before you try and taper again.
Personally I would reduce by 0.5mg each time - easier for your PMR and your adrenals...
If you are above 5mg of pred there is no point having adrenal blood tests done, all they will show is that you are not yet producing much cortisol because the dose of pred is suppressing it. Even at 5mg it is still suppressing cortisol.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Reducing
reducing Prednisolone 
Reducing prednisolone
Reducing TCZ?
Wonderful Rheumy
