PMR. I've tapered from 15, now down to 2 by going down 0.5/month. Chatting to my chiropodist the other day - his parents both have PMR - he said they were both told to stay on 1mg for life.
Is that usual? If my GP says once tapering is ended that's that, no more steriods, do I say OK?
Any experience of this?
IF your PMR has gone into remission - and you won't know that until you have been at zero for a few months with no return of symptoms - there is no need for any Pred.
But 1mg is neither here nor there with respect to side effects, so probably not doing your chiropodists parents any harm. But maybe ask him next time the rationale behind their doctor decided that
If you can get off pred without repercussions - why not do so?
Prof Dasgupta told us in a seminary during Covid that he often keeps patients on 2 to 3mg pred long term as it reduces the likelihood of relapses. There is this concept that PMR only lasts 2 years and then magically disappears. His comment suggests to me he is tacitally acknowledging that it does indeed last a lot longer! Many patients get off pred and find they get symptoms back a few months later - 1mg was plenty to manage low disease activity, zero pred was a step too far. If that happens a couple of times it is a message the PMR is still alive and kicking, just. If sticking at 1mg stops that - you will probably use a lot less pred in the long run. But if you CAN get off pred without a flare - you won't need even 1mg.
Interesting point. I tapered off pred and got to zero in July 2023 after having had PMR since Jan 2022. No flares at all in that time. Followed standard NHS protocol and DSNS when on low doses. But 6 months later (early Feb 2024) GCA hit out of the blue. I have been wondering whether the same ( PMR or GCA) may happen yet again, after I get down to zero pred again. Seems there's no sure way of knowing if has gone, even with no symptoms at all. So.... it seems there is an argument for staying on say 1mg. I shall watch this space!
That was mean - usually at 6 month you'd think you were safe, Six months is about the limit for very low disease activity building up to give a relapse but 18 months is quick for PMR to be in remission - and obviously it was heralding GCA. It never really is gone - the predisposition to it starting up again remains for life, like any autoimmune condition.
