dexa scan, how often?: I 'm wondering how often you... - PMRGCAuk

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dexa scan, how often?

Tiredcat profile image

I 'm wondering how often you PMR sufferers are offered a dexa scan in the UK?

I have osteoporosis, had a dexa scan going on for two years ago, and because I am rather uncertain if I should agree to another yearly dose of aclasta, (Have had one), I would like to know how my bones are doing. My doctor says I wouldn't get another one provided by the health system until five years from the first one. I would be happy to pay myself, but just wondering how often you people in the UK have them? Am I just being a fuss-pot?

25 Replies

I had one every two years after 6 months with GCA. (higher doses than PMR) but still should have Dexa.

I am aware that although this is stated in the Guidelines it is often difficult for patients to get GP's and Rheumy's to follow that particular part of the Guidelines.

My Rheumy and GP were excellent.

Tiredcat profile image
Tiredcat in reply to jinasc

Thanks for replying jinasc. I'm pleased to hear that every two years is a reasonable expectation.

I was told every two years and have had two good DEXA scans. I expect that I will have to chase a third.

Thanks for that, I think I am right wanting to have one sooner than five years, then.

I have never been offered one routinely. I asked for one when first on pred so I had evidence I did not need to take alendronic acid. I probably should ask for another, as I know it won’t be offered to me!

Tiredcat profile image
Tiredcat in reply to Mary63

Yes, we do have to be proactive about our health, but easy to feel you are fussing and expecting too much!

I had a dexa scan 2014/15 with no offer since then till now..luckily a nice Gp receptionist tagged me onto the days patient call list so now it’s being sorted as I’d been overlooked..

Hi Tiredcat, I had mine before I started steroids only because I saw a private rheumatologist first and asked for it myself (this was while I waited for my NHS referral to come through). It will be 2 years in September, so I will need to have another one. However, as we may have to suffer the consequences of the pandemic for a few years to come, if I can't get an NHS one, I may have to have one done privately again. A place in London (Oryon Imaging) allows you to self-refer for a dexa and it costs £65.

hi moaning violet, thanks for your reply. I am in New Zealand, no problem with covid here, but it seems our health system doesnt take osteoporosis as seriously as they do in the UK.

Sophiestree profile image
Sophiestree in reply to Tiredcat

That's interesting that they are not tuned in to Osteoporosis. I wonder if it is your good weather and people are out much more than other countries and so you get a good dose, supposedly, of Vit D from natural sun. I was told (UK) they were every 3 years, but had to fight for one with my consultant as she said I didn't need one if I was having a zalendronic infusion, duh, would be good to compare numbers me thinks, anyway, I nagged her every time I spoke to her and she relented. Terrible depressing results, buy hey....

I need mine checked as I have osteopenia and want to know if results have changed since Pred of 6yrs...hiatus hernia/ mildly inflamed oesophagus/gall stones to name a few need discussion with Rhuemy as and when time comes...it’s in the pipeline now as I’ve been overlooked..

Yes, you definitely need to know if you haven't had one in the last 6 years. I know about the overlooked part, happened to my late husband and me. Hence it's a full time job being in check with your own health. Let's hope they can organise it sooner rather than later for you.

PMRpro profile image
PMRproAmbassador

The official recommendation for people at risk - and that includes on pred - is every 2 years.

I applied for one that would have been 2 years coinciding with an extended trip to the UK who at the time still provided my healthcare and it was turned down by the delightful rheumy, a former colleague, who hadn't recognised PMR and insisted it was OA (no sign of that 13 years later) because it was a month too soon. I got one done here - a whole 37 euros at a local private clinic who actually also do the NHS-equivalent ones here for the same price. I get round to it about every 3 years, -ish.

The argument for the minimum 2 year gap is that it isn't a definitive figure you get as a result and any change is mostly not that great in less than 2 years. And now it is because of demand and lack of dexascanners - so could be far longer.

Tiredcat profile image
Tiredcat in reply to PMRpro

I shouldn't have moaned about our health system, we have a lot to be grateful for, but five years does seem a long time to find out if the bones are improving or getting worse, and therefore how to manage the situation.

PMRpro profile image
PMRproAmbassador in reply to Tiredcat

Couldn't agree more about the 5 years. But the NHS brings some of its problems on itself. My husband ran the department where dexascans were done. The scanner was ancient and needed to be replaced - he had charitable funding for the capital cost but the CEO wouldn't approve it because it didn't pay the technologist's salary and disposables - they were already covered and had been for years by the NHS, the technologist had other duties too. So no new scanner due to sheer pigheadedness. The gentleman concerned was later investigated for fraud ...

Tiredcat profile image
Tiredcat in reply to PMRpro

Ouch!

I had one a year after my first and now it is every 2 years

Tiredcat profile image
Tiredcat in reply to Koalajane

One a year! now that's service!

I’ve never had one , and I broke my wrist 2 years ago .

I’ve had PMR since 2012 . My GP practice really is rubbish. I’ll try and get one done privately. You’re certainly not a fuss-pot .

When I said to the lady who did the scan ‘see you in two years’ she said ‘no, three years’! There is an enormous demand on the scanner in my area, people come from miles away. They only have the scanner as a group of us fund raised for it.

Maybe that explains the pressure to routinely prescribe Alendronic Acid and it’s like.

Hi I just said my rheumatologist wanted another one and it got requested - they rejected the request but I said it was necessary and they accepted that - last one was 2 years sgo

I had no problems getting the first one, even in the middle of the pandemic, a few months into PMR doc suggested I might want to consider AA and I suggested a DEXA first to which she happily agreed. Not been on Pred long enough to worry about another one yet.

Having read on site that a dexascan was a good idea before using AA, I requested one from my doctor. A month or so later I chased it with him he said letter had been sent to hospital and I would hear from them. I contacted them to check I was on list. They said as high steroid user (GCA) I would be a priority but expect to wait at least 4/5 months. I was lucky and got a cancellation about 4 weeks later, so had my first scan approx. 3 months after diagnosis. On the letter confirming results were good and no AA needed, it said repeat test every 2 years.

Five years seems a very long gap, especially if you have osteoporosis. I would certainly want one sooner than that.

I had my first one when first diagnosed and have just had my second one (2years later) I did have to push GP to refer me, my appointment came through really quickly. Reading what others have said I feel really lucky to have got it so quickly.

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