confused

[2013mayo]

Hi everyone, I’m really confused. I’ve not seen my consultant for GCA/ pmr since last December. Last time I saw him he wanted me to cut down my pred as much as possible in the hope I’d be off pred or nearly off them by the time I saw him yesterday. I’d got down with a struggle to 1/2 mg and then because of headaches and a few shoulder aches I’ve increased it to 1mg over the last few days. When I went to see him he was very charming and advised me to go back to 2mg and see how it goes, he said he’d be happy if I stayed at that level for a couple of years, maybe dropping to 1mg?

[PMRpro Ambassador]

If you need 2mg, you need 2mg - or whatever you need, I suspect he was making it clear you were to taper and you have done that so he is pleased. You aren't classed as a "drug-seeker" so you can be allowed to continue with what is a very low dose. But if that turns out not to be enough - be clear, you will need a bit more. But it is looking good at the moment!

[2013mayo in reply to PMRpro]

Thank you

[SheffieldJane]

You seem to be doing well and the tiny dose is currently necessary. All is fine I would say, unless your confusion stems from something else? Also, doctors live and learn like the rest of us. I believe the correct management of PMR/GCA is reaching the mainstream. I feel sure that we, as an engaged and active Charity are helping, in no small way.

[2013mayo in reply to SheffieldJane]

Hi, I’m not confused with what he said last year, he gave me the impression he wanted me off pred altogether by the time I was seeing him yesterday, so what’s confusing now is he said it’s ok to go up again.

[DorsetLady PMRGCAuk volunteer in reply to 2013mayo]

He’s obviously had a Eureka moment! .. or has been reading this forum and learnt something 😉

[2013mayo in reply to DorsetLady]

🤣

[tangocharlie in reply to DorsetLady]

And/Or learned of Dr Dasgupta's theory that GCA pateients should probably stay on a low dose eg 2mg for ever to reduce the risk of recurrence? Maybe one of his proteges or mentees?

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Whatever it’s better than comments at previous appointment-so good for mayo..

[2013mayo in reply to tangocharlie]

Well he is one of the top boys in GCA, who knows why he said that last year, maybe he thought I was relying on pred too much ( I wasn’t, far from it).

[PMRpro Ambassador in reply to 2013mayo]

He is or THINKS he is?

[2013mayo in reply to PMRpro]

Quite

[PMRpro Ambassador in reply to 2013mayo]

We know one gentleman told people he is a world expert - because he declared himself so ...

[2013mayo in reply to PMRpro]

I’ve looked his name up and it appears he is one of the leading specialist for GCA

[PMRpro Ambassador in reply to 2013mayo]

In his humble opinion ...

[2013mayo in reply to PMRpro]

🤷‍♀️

[Missus835 in reply to 2013mayo]

My Rheumy must have been hit over the head as well. She was a "reduce pred relentlessly to zero" and now says she'd be happy with a 2.5 mg. maintenance dose. Although she's still on the reduction of 2.5 mg. bi-weekly. I explained that this was too quick and what about possible adrenal issues down the road a bit. She said " well it doesn't happen to everyone". Glad I've finally reached the top of the list for an actual GP. Here in Nova Scotia it's like winning the lottery.

You've done well. All the best with the next part of your journey.

[2013mayo in reply to Missus835]

Thank you

[Rugger]

My Rheumatologist, who is an expert in this field and a Patron of the charity has written to my GP that I should "Keep tapering prednisolone to find the lowest dose that is effective for her GCA/PMR." I was tapering from 3.5 to 3mg when I saw her a month ago and she stressed that I should not be aiming for zero at any cost. I'm trying 2.5 to 2mg now, taking 38 days to get there - if I do!

All the best.

[Charlie1boy in reply to Rugger]

That’s excellent. Very encouraging to hear such good news.

[2013mayo in reply to Rugger]

Thank you