Tray

[pmrdec112014]

I have not posted anything for ages although I still read most of the posts daily.

My 76 year old father has just been to see a rhemy who has confirmed he does have pmr after about a year of vague symptoms and treatment from his gp of steroids.

The thing is this...when my mum told the rheumy I had pmr he said it was highly unlikely given my age of 51 at diagnosis.

Also he wants my dad off sterstro asap as he says its not good for him to have been on them as long as he has ( this is at least 8 months less than I've been on them so far) ..so where does that leave me! I am seeing my gp on tues for my routine check up and I am going to tell him what this rhemy of my dad has said and see what he says about it all. I am cuurrenly reducing from 7and a half to 7 via the dsas method.It takes about 7 weeks to reduce each dose and seens as i doing half a mg each time I have worked it out that it will take another 2 years to get off the steroids assuming no relapses along the way. Now I am worried about how long I will be on them ....

[DorsetLady PMRGCAuk volunteer]

Hi Tray,

Sure others will be as amazed as me and you at Rheumy's comments. Yes it's unusual to have PMR in your 50s, but as we know it's not that rare, and what else does he recommend for the pain etc if not steroids? Plus he may want you father off Pred ASAP, but we all know once you've been on them for a period of time that's easier said than done - like most strong drugs.

As for yourself, just keep reducing as you are, your GP seems happy with your regime, so stick with it. Now you're down to 7mg you don't want to rock the boat and upset things. By all means relate your father's case to your GP but don't follow his Rheumy' advice!

[pmrdec112014 in reply to DorsetLady]

Thank you Dorset Lady x

[PMRpro Ambassador]

I was 51 when it started - and the guidelines say over 50 as the age range - and some better rheumies say that yes, it DOES happen in patients in the 40s too. That rheumy is out-of-date - and obviously not particularly interested in his patient's quality of life. Your dad is 76 - he could well be on a low dose of pred for life and it won't do any great harm - and that is the opinion of some of the top PMR people.

I've been on pred for 7 years, I've had PMR for 12 years, I'm better now than I was in any of the 5 years of PMR without pred. Without pred I would be immobile (a major risk factor for osteoporosis), have great difficulty moving around (a major risk factor for falls and broken hips), be depressed because of constant pain and put on weight because I can't move. Plus a whole load of risks increased because of unmanaged inflammation (risk factor for cardiovascular disease and cancer).

For yourself, ignore your father's rheumy - in fact, try to get your dad to seek a second opinion if the rheumy forces him off pred and the GP doesn't turn out to have more compassion. Why on earth should your father's later years be ruined with pain without need? He may live a year or two longer - but it will feel like 20 years longer to him if he has no decent quality of life.

[pmrdec112014 in reply to PMRpro]

Thank you PMRpro. X