Hi everyone, after trying 1 tablet of Alendronic Acid and feeling awful, my doctor agreed to refer me for a Dexa scan (at my request) to see if I needed it. My local hospital has a waiting list to get onto the waiting list!!!! and the next nearest hospital is an average of 18 weeks to be seen.
I have booked myself a Dexa scan in London at an imaging clinic in Winpole Street at the cost of £65 plus train fare of around £40 and I get it done a week this Thursday with results same/next day. It sounds worthwhile to me, hopefully I’ve got good bones and will be able to manage without Alendronic A. Will let you all know how it goes
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Jo1947
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It sounds really worth it! Perhaps this is why the Biophosphonates are being over prescribed? There are simply not enough DEXA scans available, trained staff etc. It breaks my heart how the NHS is being deliberately run down. Good for you taking the bull by the horns.
It's the people who simply can't afford to do this that worry me.
Good luck with the scan! I hope you have the bones of a 30 year old, like me. 😊 (Yes really!)
My husband had a dexascanner in his department which requried replacement. He had charitable funding available to cover the capital cost and assumed that would be enough. No, he had to include the cost of staff - who were already there and doing scans - and as a result the manglement turned down the request.
I went to the same clinic for a DXA scan earlier this year because my GP wanted me to take AA, but having tried it for a few months a few years ago, and feeling so sick all the time, I refused to take it without knowing how my bones are doing. The clinic is very professional and the staff are kind. My scan showed no osteoporosis, and after 8 years of Pred that is excellent news. Am at a very low dose now, so the risk is even smaller. They send the report to your GP quickly, so chase it at the surgery to make sure you get the news soon. Hope you get good news.
Thanks nevagiveup, that is reassuring, how long did it take for the scan? I shan’t have any time in London to shop but I think that’s probably a good idea, traipsing around shops would send me to sleep for a few days afterwards
They take about 15 mins - usually you just have to remove anything metal that might interfere. So no ages getting undressed and dressed again. I spend longer waiting to get in there than in the room itself.
I'm not in the UK, I can have a dexascan tomorrow and it will cost me 36 euros with a referral - but I have to travel 70km - it is the only scanner in the region.
However - after over 7 years of pred my bone density is well short of osteoporosis (t- scores of -1.0 or thereabouts) and I have taken precisely 4 AA tablets, right at the start before I did my homework and agreed with the GP it was silly not to wait for the scan result. And my cumulative pred dose after 8 years is IRO 20g - so it isn't inevitable you will be osteoporitic.
Thanks PMR, you’ve done well with your bone density. That’s a very good price and access to a Dexa scan. I am having to travel from the midlands to London to get the low price though but I will relax on the train walk to the centre and then back on the train.
I am -2.7 BUT that means an 82% chance of NOT having a fracture in the next 10 years... so even osteoporosis diagnosis is NOT all that bad if you have balance and some fitness and don't fall! Icy England. get Ice-bug boots and shoes. ! Hope you are all okay in the snow and ice! (we need it here in Minnesota!)
Thanks yogabonnie, thank goodness where I live it’s melted today! I will be asking advice on here when I get my results, at this moment I havnt a clue what the scan numbers mean at all.
Thanks Jane, I also feel it’s so unjust that all can’t afford to buy a scan. I live in the midlands about 30 miles from you and if I had it done locally it’s around £225, even more unaffordable.
It’s great how young your bones are, I am hoping but not expecting such a young frame as you.
I do hope you get the result you want to justify no Alendronic acid. When my doctor asked me to start on it, having read about it on this forum,I asked for a dexascan first. I realise now how fortunate I am because I got an appointment for 2 weeks later at a hospital 25 minutes drive from my house.I live in central Scotland. I'll get result next week at doctor so my fingers are crossed too. Hope your journey to London goes smoothly, maybe you'll see some Christmas lights 🎄🎄
Thanks Holly, good luck on your results, let me know how you get on! I have now reduced from 15mg to 10mg which seems to be settling ok. Started end of September on 15mg.
Looking at all the advice on this wonderful forum, I think I shall wait until the New Year before attempting the next reduction on Dorset Lady’s plan.
Will look out for the Xmas lights and might have a wee dram on the train back home as I havnt got to drive,🥃
Snap! I'm also on 10mg now. Started on 15 with a blip of few weeks at 60 while testing for GCA. Getting a bit creaky just now but wonder if it's this awful weather. So cold ❄❄❄ Enjoy your journey 😉
Thanks Klah, I was very uneasy taking the one tablet but knew straight away I wasn’t going to take any more until I knew if I needed to. My doctor has suggested the yearly injection for AA, that’s why I want an early scan to see just where I’m at re bones
I helped fundraise to get a Dexascanner at our local cottage hospital. We also fundraised for staff training. Prince Charles’ wife Camilla opened the facility, I believe she has something to do with osteoporosis. Even with the scanner it is quite hard to get an appointment.
Here's my Prince Charles story. When I was 21 years old I came to "au pair" for my sister who lived in Essex for some months and I had my cello with me. I wrote Prince Charles and said I understood he played the cello (probably as poorly as I) and would he like to play Kummer duets! AND I got back an answer from his secretary saying Prince Charles receives invitations like this all the time (I'm paraphrasing here) and would NOT be able to. ha! I suspect they thought I was the next Wallace Simpson!!! (typical American brashness!)
Hi My GP recommended that I should take AA but after being on this forum for several months and reading of possible side effects, I suggested that a Dexa scan might be a good idea as we didn't actually know if I needed AA. He agreed (he's very good and tends to do as he's told - I do like a man who does as he's told!) and the appointment came through within a week. Results followed equally quickly and turns out my bones are OK. Consequently I don't need AA but how easy it would have been for me to be "forced" on to yet another drug which, presumably, is a lot cheaper than the Dexa scan. I live in West Yorkshire where I seem to be very lucky with getting appointments both with my GP and the HRI. I don't think it's fear on their part but you never know!! Either way I am very grateful and only sorry that we seem to have this unacceptable lottery game going on over the UK in the NHS. I wish you well and sincerely hope your results come back as well as mine did.
I have had a Dexa scan (on the NHS, with just a 2 week wait over last Christmas and New Year) and been diagnosed with osteoporosis and am on Risedronate. I don't experience any problems with it. My pharmacist tells me that it's more expensive than AA! I keep meaning to look up the price difference!
I read somewhere that if you want to compare subsequent dexa scans, you should have them done on the same machine. Apparently there are different types (of scanner) which make comparison difficult. Something to bear in mind for the future.
I am so shocked that a doctor would order Biophosphonates WITHOUT even knowing. There are huge side-effects as I have learned from the Bone Book. Good luck with it. I think it is well worth it! I am osteoporotic but am going to do all the weight bearing exercise and take the vitamins and fit K and Doc said I could have another scan in a year and see where it is. I still won't do the meds for it however....
My doctor argued that I had been on steroids for some time so should take AA and that was his reasoning. There was a minor argument that I thought I had won, but the next time I talked to him he brought it up again. I have a very positive Dexascan but that did not seem to play any part in his thinking.
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