Update to 6 weeks without Pred

[Suffererc]

plucked up courage and rang Surgery to leave a note for my GP by name.

Appointment this am.

went very well. Agreed for me to go back on 5mg Pred for 2 weeks then drop to 4mg if all going ok. Agreed to take AA weekly as GP very worried about my bones and to have a Dexa scan which she arranged.

another appointment in 4 weeks and blood test in 2.

So I think a win win and I admit I came away happy.

Didn’t expect that sort of service 😊

[PMRpro Ambassador]

Sounds a plan. If you are direct enough it does seem to work.

[DorsetLady PMRGCAuk volunteer]

Hope it goes well

[Suffererc in reply to DorsetLady]

Thank you 😊

[HeronNS]

Will you be able to have the DXA scan before you actually take any AA, to get a proper baseline? Although I suppose things don't change immediately.

[Suffererc in reply to HeronNS]

Doubt it. Don’t start taking until Monday. But last Scan was 2021. Didn’t really think GP would agree to another 😊

[PMRpro Ambassador in reply to Suffererc]

Not so much the GP as the UK protocols which say 2 years must elapse between checks. Bone density doesn't normally change quickly and because of the technology, small changes can't be reliably established, It isn't something that can be compared between different machines either though 2 readings on different machines are equally valuable in looking at bone status.

[Broseley in reply to PMRpro]

I had a DEXA scan in June 21 before PMR was diagnosed. I asked the GP for a follow up one this summer but she said I have to wait till I'm off pred. (I was put on AA for a T score of - 1.25 N of F, osteopenia. The results notes from the hospital recommended it.)

[PMRpro Ambassador in reply to Broseley]

NOTHING would have persuaded me to take AA for a t-score of -1,25! That is barely under normal for 30!

There is also no rule I know of to say you must wait until off pred - it is actually important to know what is going on. I know of one lady who took AA for several years and then developed severe compression fractures of the spine. Her consultant admitted the AA had achieved nothing ...

[Broseley in reply to PMRpro]

Her reasoning was that I was at risk anyway, and with pred that risk is increased, so I would not be allowed to stop AA until I am at least off pred.

[PMRpro Ambassador in reply to Broseley]

My t-scores were not quite as good as that, I didn't take AA and after over 11 years on pred - not much deterioration in the t-scores and haven't yet broken anything ...