PMR progress or not

[Darcy2000]

I am now on 10 mgs for my PMR having started at the higher dose of 40 mg and the lower I go the worse my mornings are ... that being said by 10:30 am I am pretty well back to normal... so I can deal,with about 4 hours of severe stiffness and shuffling if this is a Normal direction for PMR... I have had this for about 8 months and will be decreasing by 1 mg a month til.... whatever happens....

[PMRpro Ambassador]

You are already showing the signs you are at the very least on the borderline of the lowest dose that manages the symptoms. A diagnostic criterion for PMR is morning stiffness that lasts more than an hour. You are back to that.

But I'd say you are already too low - either that or you need to split the dose to improve the mornings.

[Louisepenygraig]

It sounds to me as if you are on too low a dose, I'm not an expert though. You do need to listen to your body and not reduce relentless whatever happens. Too little pred means the inflammation slowly builds up. How long have you been on pred for? What dose were you on when you still got relief?

[Darcy2000 in reply to Louisepenygraig]

I have been on for 8 months with the goal reducing my 10 mgs by 1 mg a month...having started at 50 mg

[PMRpro Ambassador in reply to Darcy2000]

It doesn't work like that - the underlying cause of the symptoms we call PMR is an autoimmune disorder that, luckily, is generally self-limiting and burns out eventually. All pred does is provide a better quality of life in the meantime. However, that can take some years and a fairly recent study found the median duration of pred management to be 5.9 years. 42% of patients are still on pred after 10 years.

medpagetoday.org/rheumatolo...

[Darcy2000 in reply to PMRpro]

Thanks for info... may die before the PMR burns out such is life

[Louisepenygraig in reply to Darcy2000]

I'm learning the hard way not to set goals. I was going to say 'I've learnt' but I don't think I'm there yet.!

[DorsetLady PMRGCAuk volunteer in reply to Darcy2000]

That’s. A very high starting dose for PMR - can I ask why?

Plus 8months is nothing in the great scheme of things as others have explained.

A long way to go, and you might just as well be comfortable so an increase is on the cards, but try the splitting of your dose initially to see if that helps.

[Robinsnest72]

I am now down to 8mg from 15mg. My experience is the same as yours. However, it is in my hands and upper arms. So far legs not bad but am stiff when I stand up. I am also 1 mg per month right now. As long as my blood counts are good I am just going to push forward and accept this is what I have to live with. Try splitting your dose maybe 6mg am and 3mg in the evening. It has taken me a year to get here.

[PMRpro Ambassador in reply to Robinsnest72]

But you don't have to live with it. You are never reducing relentlessly to zero - you are tapering the dose to find the lowest dose that gives the same result as the starting dose did. That will vary for everyone which is why you do it as you do. You should never feel worse at the end of a taper step than you did at the beginning.

When you get to a step and you feel worse - you have found that dose for now, you go back to the previous dose and wait a bit before trying again - it doesn't mean you won;t get lower, just not yet.

[Darcy2000]

Thanks...,sounds reasonable...will,soldier on

[PMRpro Ambassador in reply to Darcy2000]

No - you don't just soldier on. You are never reducing relentlessly to zero - you are tapering the dose to find the lowest dose that gives the same result as the starting dose did. That will vary for everyone which is why you do it as you do. You should never feel worse at the end of a taper step than you did at the beginning.

When you get to a step and you feel worse - you have found that dose for now, you go back to the previous dose and wait a bit before trying again - it doesn't mean you won;t get lower, just not yet.

[Louisepenygraig in reply to Darcy2000]

Just soldiering on can make things worse in the long run and then tapering takes even longer