I’ve just achieved the slow taper down to 3mg and am feeling fine.
But I’m just wondering about how long to stay on the AA for. (I’m taking into account the trauma of snapping a tooth off last night (a front one) when biting into a square of chocolate and not being able to see a dentist until Wednesday!)
My friend always used to insist that taking AA buggars up,teeth. But maybe it was a case last night of a greed for chocolate - and teeth that I’ve had for many years 😂
Not sure how long you’ve been on AA, but probably long enough to have a rest [some studies say 3 years, some say 5 years] and it really depends on bone health. I stopped just shy of 4 years -so run it past your GP. ..plus it stays in the body for ages anyway.
It’ll be 4 years next month, DL. I’m seeing my dentist tomorrow anyway so I’ll flag it up.
DIscuss this with your dentist! I fractured a root of a molar eating icecream! But it was biting on a pomegranate seed rather than the icecream part! What was in your chocolate?
My rheumy stopped prescribing AA once I was under 5mg - said it wasn’t required at lower doses ( for me anyway - normal DEXA scan) so probably worth checking with GP/Rheumy.
Well, since we’ve been at this new surgery (2.5 years now) I’ve literally done my own thing re Prednisolone etc (they don’t seem interested at all). I’ve just come down to 3mg so going in the right direction.
And since being diagnosed 4 years ago next month, seeing a rheumy has never been mentioned.
I persuaded my GP to let me stop taking AA after 2 years as I'm down to 1.5mg pred. However I was initially prescribed it by a different GP because a dexa scan showed osteopenia, my T Score was -1.1. I hated taking it, and my dentist is concerned about my teeth, a few of which have become loose. She says my jaw bone is receding.
It might be worth asking for a dexa scan just to check. I asked for a follow up one, but was told it has to be 3 years from the last one.
It is so frustrating - a score of -1,1 is almost normal, -1,0 would have been!
Yes, and I believe it's because the lab that sent the results added 'osteopenia' to the results that the GP put me on AA.
Technically it IS in the osteopeneic range - but that is a description of a status, like cloudy on the weather forecast. But is it a couple of white fluffy clouds you can ignore and not take the brolly or is it dense stuff threatening rain? It isn't a pathological state requiring treatment.
I love the simile. And yes, I agree entirely. I think GPs have to act on these things for fear of litigation these days!
Mind you, our GP failed to act on a friend's signs of a TIA and she had a major stroke a week later. She survived, but has a very long road to recovery.
Oh what a shame - going to hospital with a TIA is important, if only for the anticoags to reduce the effect of a stroke. Was the stroke not recognised quickly enough either? Clotbusters and the neuro cath lab can do so much these days to reduce recovery time.
I believe it was during the night.
We all said she should've gone to A&E with the TIA as she temporarily lost movement in her arm and her speech became slurred. But they were on holiday in the Lake District at the time.
What a shame, My daughter lives in a perfect granny flat in Whitby - except she says I'm not allowed to live there, too far to a hospital!
We are so lucky here. We have a choice of 2 major hospitals, one 6 miles away and one 8. We have a cancer hospital 3 miles away, which also does physio appointments, blood tests, and mammograms. It also has a rehab centre, which is where my friend is for the foreseeable.
We have Alderhey Children's Hospital and the Liverpool Heart and Chest Hospital half an hour away over the Mersey.
There is certainly a plethora of options in the NW! Also an awful lot of customers ... And you have an amazing neuro centre in the Walton Centre in Liverpool. Makes a change from all being around London.
Ha, that’s an important thing nowadays.
Fortunately we are literally within a 17 minute walk from our local hospital. It saves trawling round looking for a parking space, not to mention the parking charges!
I have a half hourly train service, 10 mins to the station here, hospital has its own station which, when they aren't building at the hospital, is literally down one lift, 15m across the yard and up another lift! At present you have to walk around to the front door, maybe 100m.
In Durham I said I didn't mind living in town as long as it was walking distance to the hospital for OH, Took about 7mins, less to his department than from the carpark that wasn't big enough anyway.
Me too ! Such a comfort.
Well, my first DEXA scan 3 years ago said I had osteopenia. and the second one I had done about two/three months ago gave the following results:
Femoral neck -1.5
Lumber spine -1.9
Hip DXA -1.5
My third scan will be in 2026.
They have never been in touch to discuss the results so I’m guessing I’m still classed as having osteopenia🤔
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