I spoke to an old friend the other day. I knew she had Pmr, but she doesn't like talking about it. When I told her about the forum when she first got diagnosed she dismissed it saying she wanted to stick with her doctors. She did the usual nhs protocol of reductions.Anyway, now she is on her last 1mg and says she will be off them by August! All she complains of is backache, and feeling achy when she overdoes things.
This is in just over a year! I can't believe it!
It's not impossible, but as PMRpro often says there do seem to be different types of PMR... and obviously we don't often see people like your friend on here because they don't need us..
Proof of the pudding will be a few months after she's taken her last pred.. let's hope she right in her prediction.
She isn't off pred altogether yet and 1mg can be a fair bit in the context of PMR, One study found that 1 in 5 managed to be off pred in a year - by 2 years it was 1 in 3. But the patients off in a year were at a much higher risk of relapse - I think because the underlying disease activity waxes and wanes and patients often manage to get off pred when it is at a low level of activity and then it starts up again and back come the symptoms. That can apply at any time of course.
But there are definitely different types of PMR, just as there are different causes, It is fairly clear the cases triggered by the Covid vaccine tend to be relatively short-lived, not always, but often.
People like her are lucky - but also at a bit of a risk since they can all too easily be in denial about the return of symptoms.
Lucky friend !! I'm 3 years in and very slowly tapering from 2mg to 1.5mg . I feel lucky compared to some on this forum.
Hi Carol, old buddy! Yes, I'm the same. I was on 1.5 for a couple of weeks but had to go back up as pains in my shoulders were getting worse.Maybe I need to stay on 2...
I'm on my third attempt to get down to 1.5 but I might have to go up again. It gets very frustrating as the rheumy keeps telling me I have to come off!
He's not in charge!!!
It is silly for them to bully patients on that low a dose.
He said himself that it's not so much a problem being on low doses only then to go on and say I'm to come off in three months. Exactly what he said last year but I ignored him then and I'll probably do my own thing now. As long as I can still get the pred from the surgery I'd rather take advice from here.
It does happen. I have noticed that those who get off steroids quickly do seem to be more likely to have a relapse. That is not a scientific comment, it just seems like that!
STUCK IN A PRED RUT
Just a year in and clear about personal approach
Two weeks off pred …
35mg Pred after a year of GCA,PMR
