I have been off steroids for 6 months. Started to have increasing pain, my GP just called to say my inflammatory markers are up, would I like to try pred again……arghhh.
It’s been 4 years on them. Should I ask for referral back to Rheumy? I’m really disappointed.
Sounds like your GP is on the ball -and unfortunately it’s not that uncommon for PMR to resurface after a few months if it wasn’t in full remission previously. That’s how long it takes for inflammation to build up again. As you also have a return of pains sounds very PMR ish, so why do you want be referred to Rheumy.
Do you have other health issues that’s make it more complicated?
if you act quickly you may find that a relatively small dose of Pred is enough to get inflammation back under control
thank you for coming back quickly Dorset. I had so many of the ‘side effects’ I was glad to be not sweating, sleeping better, got rid of the shakes, lost weight. I wondered if there was an alternative.
Unfortunately not really -but as I said many find that if they catch a reoccurrence/relapse (whatever you want to call it) promptly a small dose is enough. And at a small dose there shouldn’t be too much in the side effect line.
I hope you are right. I will see what he suggests
I hope you will be okay . It is good that your gp has responded in this way . I hope too that you may not need such a high dose this time . I am a bit puzzled by my own situation . Having had pmr for over two years and after a few minor flares ,I managed to reduce to 1/2 of pred which I realise is miniscule about ten days until the lower back pain and aching legs in bed and morning stiffness and tiredness returned . Looking back I have felt tired and generally off for sometime . I have only increased to 3 mg and symptoms are not noticeable . It is strange as I would not think that would make much difference but will see . I guess I should try and speak to a gp . Last time i relapsed on 2 mg and managed ok with increase to 4 I spoke to gp who wasnt very happy with that because of long term steroid use but was ok after we spoke a bit longer . just encouraging me to slowly taper which i did . I havent been for proper walks for a while and in and been in and out of the car which I recognise stiffens us up . Hopefully when weather improves, I will but not overdo it . Sorry to go on Alazarin . I wish you well .
1/2mg may be minuscule - but at such low doses it can make a big difference -as many will testify.
I would say that some if your tiredness may be due to adrenals stuttering to work rather than your PMR. Maybe have a look at this -
healthunlocked.com/pmrgcauk...
But a v. slow taper will help both
You have a very sensible GP and if you say yes and start with 5mg for a week you can almost certainly be down to 1 or 2mg within weeks. Six months is a common time for the inflammation being caused by a very low activity PMR to build up enough to be felt. Since it took so long, 1 or 2mg is likely to be enough providing to clear out the existing inflammation first.
I too have been off pred for 6 months and all the old pains have started to return. I thought at first it was just down to my shoulder injury, but last night I had pain everywhere - shoulders, arms, wrists even shins! I'll take the pred again no question if my GP agrees - I can't go through that again. Catch it quickly seems to be the advice. It's gutting I know, but think of the alternative. Wishing you a successful resolution.
I was off pred for 8 months before the pains returned! I'm now back on 5mg pred. It's too much of a risk to ignore rising inflammatory markers with both PMR and GCA. You should be reassured that you have a good doctor who has your best interests at heart.
PMR: 2016
GCA-LVV: 2019
I had a lovely conversation with doc yesterday, a complete stranger to me, but she had obviously read my notes. Was going to suggest we went to a 15mg dose( as per guidelines) when I said can I haggle? She heard me out on my experience, and we agreed on 7mg and blood tests in a month. so nice to be heard and have your lived experience acknowledged.
Apparently my adrenals were functioning perfectly normally! Which was nice to hear, glad the poor things hadn’t completely packed in.
So……here we go again.
recurring headaches
Inflammation anaemia?
Temperature and inflammation
Symptoms recurring on 3.5 pred.
INFLAMMATION
