Hi,
was told a couple of years ago that my PMR had subsided enough to go onto 1:2 mg alternate days. Few weeks ago I was told to stop it altogether as my ESR was 12mm and normal for my age,72. Pains have come back over the last few months around shoulders and hips. Though not debilitating it can at times be painful. Do you think I should hold tight or ask for increased dose?
“Few weeks ago I was told to stop it altogether as my ESR was 12mm and normal for my age,72.”
So have you stopped? Sounds as if pains had already returned before you were told that -if so did you tell doctors?
As for comment re ESR-it should be okay when on Pred, that just means the drug is doing it’s job …. not that PMR is gone.
If you hold tight, and it is a flare of PMR , it’s likely to get worse -so you need to increase -just a couple of mgs may be enough -so please speak to doctor.
And in future, suggest you keep your days same dose, not alternate days as you have in past - not sure that helps especially at very low doses -big difference in percentage terms day by day. And use one of the slower tapering plans once you’re back on track - examples here -
healthunlocked.com/pmrgcauk...
Thx as ever DL.
Higher dose - is that half a mg on alternate days or 1mg one day, 2mg the next?
When will they understand that having a low ESR means the pred is doing its job, even at a low dose???
1 and 2 on alternate days. My ESR results have fluctuated over the years between 12 and 16. Never sure what is adequate for my age.
That is a level that suggests you are well controlled. - but as I keep saying, even 1/2mg a day can be plenty to mop up low levels of inflammation but stopping it allows the inflammation to build up until you are back where you started. Nothing would induce me to stop suddenly if on 1 or 2mg. Not least since that is also enough to substitute for lack of adrenal function.
Personally if I find pains are coming back I would look to increasing the dose by 5mg for a week or so, hitting the PMR on the head and then dropping back to say 2mg.
Why do doctors think that if your inflammation markers are OK you can stop taking steroids. Don’t they realise that is why they gave you steroids in the first place to stop your inflammation markers flaring up?
If you ever work out the answer to that question - do share!!!!!!
Abso-blooming- lutely ….😉
Glad your middle word was "blooming".
Well as a Lady and a Viking goddess one has to preserve some semblance of propriety in public…
..and if you believe that, you’ll believe anything 😳
Thx for all the helpful comments.
back again
Does PMR come back again?
is it back again?
Back again - going backwards!
