how often should you have a Dexa scan ?

[Seekingasolution]

I had one when I was first diagnosed with PMR about 6 years ago. Since then I have tapered down the pred but couldn’t get below 2 mgs until … I restarted HRT. I have now managed to taper to zero for the last 2 weeks and fingers crossed, I’m hoping that’s it ! Mindful it could always creep back of course. Should I have another Dexa scan now to check where I am or would that be considered a waste of NHS resources ? I don’t take any supplements and haven’t been offered any.

[SheffieldJane]

Fingers crossed for you! I was advised that a DEXA scan made sense repeated every two years.

[piglette]

In my area we can only have a Dexascan every three years if we are lucky.

[Indigo2417]

I had a DEXA scan in 2021 after compression fractures in my spine, due to osteoporosis. It was recommended that I have another one in five years unless I break anything else. I discovered I’d got PMR in Sept last year.

[Meggie22]

I am having my 2nd Dexa scan this morning recommended by nurse practitioner at my rheumatology department. Diagnoised with PMR in July 2017, was on pred for 3 years now have Polymyalgia onset seronegative rheumatoid arthritis I am taking methotrexate and sulfasalazine.

[Seekingasolution in reply to Meggie22]

but hope the scan result is positive

[Zebedee44]

Three years seems to be the accepted practice where I live in East Sussex. After referral by my GP an appointment was offered within three weeks and the result was available to the GP just five days later. Impressive. And it is reassuring to know that seven years of pred has done no harm to my bones, with no AA and barely any Calcium and Vit D supplements. But we are all different, so probably time to ask for a scan.

[Seekingasolution in reply to Zebedee44]

Yes. I think I will ask ( again )

[SnazzyD]

Three years where I am.

[Oh-my]

My GP very recently told me 2 years is the minimum time between scans on the NHS. Usually 2-3 years. I believe bone change is very slow.

Patience isn’t one of my things so when I asked if I could request a letter for a private scan for one sooner the reply was ‘Yes you can have a private one anytime. They are very happy to take your money!’ (Background - I had gone private the first time round thinking it may never happen. My NHS one has now materialised which I’m grateful for but will cancel.)

It is not a waste of NHS resources. It is good to be kept informed about what is happening to your bones especially if, like me, you are worrying about it. I have since accepted I need treatment on the back of it.

[S4ndy]

I had one in 2016 and then one in 2021 but only because I asked for them. Will probably start asking again in 2025 for next one. NHS very busy in Essex so long waits for everything including urgent stuff!

[Rugger]

I have had one every 2 years since 2017. My first scan showed I do have osteoporosis, so this is a way of monitoring the state of my bones.

PMR: 2016

GCA-LVV: 2019.......

[Bluey-1]

I had one in 2017 after breaking a bone then in 2021 after breaking another (pre GCA). Two osteoporosis infusion treatments since 2022 and not due another scan until 2025. Long waits here for DEXAs.

[Pixix]

hm..am I the only one who has never had one? I’ve seen 3 rheumies & it’s never been suggested! I took AA, then risenodrate, for 2 years, then stopped. I’ve had a lot of x-rays in past 2 years & nothing noted there. People seem to be ‘pushing & asking’ to have them…is this a necessity then? My Dr is pretty clued up, generally….

[Seekingasolution in reply to Pixix]

dexa scans seem to be recommended regularly for people taking steroids such as prednisolone which can thin your bones. Fortunately I was never on a high dose of pred so I’m hoping I should be ok.

I’ve just looked up risenodrate and that appears to be a medication that protects bones so that’s probably why you haven’t been offered a Dexa scan.

[Pixix in reply to Seekingasolution]

To be honest, I thought nearly everybody on here takes either alendronic acid or risenodrate! It was recommended when I was first diagnosed.

[PMRpro Ambassador in reply to Pixix]

By no means everybody though I wouldn't like to hazzard a guess how many don't ... Many just take calcium and vit D which is actually the first layer recommended for younger patients. Unfortunately. there is an assumption that older patients are already osteoporitic - which is way out of line these days given how many have been on HRT and THAT can make a massive difference.

[Pixix in reply to PMRpro]

Thanks, that’s interesting. Given the fact that I’ve had x-rays of feet & hips & ultrasounds of hands, is that sufficient to say my bones are OK (in that respect), or should I ask about a Dexascan. X-rays & ultrasound all in last 12 months. I was on HRT for a long time following a hysterectomy in my late 30s. Thanks for your help! (On another subject Easyjet Is now flying gatwick to Innsbruck this summer so I looked it all up, found an apartment…but the flights, for 2, are £850! I thought Easyjet were cheap, but guess it’s only when you go at their ‘cheap’ moments! The flight I would like stops at end August ). S xx

[PMRpro Ambassador in reply to Pixix]

No - if x-rays show demineralisation of bones, they are a pretty bad state!!!

That's a bit steep! Is that a Saturday/Wednesday? I'm seeing far lower prices on other days. Like half the price or better,

[Pixix in reply to PMRpro]

Ah ha…OK! X-Ray of one foot showed disintegration of small bones but nobody seemed interested! (It was when I had a bad fall and my ankle was badly sprained, they were checking to see if ankle was broken). Yes, it’s a Wednesday. The flights the other days leave at 0700/0800 and I can’t manage that early…we’d have to stay overnight at gatwick for any flight, really. Yes, good prices for other days, but I thought most people would prefer the earlier flights, tbh. I need to know my limitations, sadly! S x

[PMRpro Ambassador]

Every 2 years is recommended and not much point any sooner. However - 6 years is far too long a gap. All depends what the resources are where you live. And some doctors assume if you are on a bone-protection drug you don't need a dexascan. You do really - but that is another story.

[ladygigger in reply to PMRpro]

"6 years is far too long"? I asked my rheumatologist during my last telephone appointment last autumn whether I should have another as I'd now been on pred for almost a year at that point.

I'm now 70, and had to fight to get a dexa scan whilst going through an early menopause in my late 30's/early 40's, particularly in view of the fact that my mother had had advanced osteoporosis with frequent rib fractures. That scan showed that I had osteopaenia, and I was told that it was probably due to better diet.

The second (and last) scan was carried out 2 years after I'd had a fall. It took that long to get a *** x-ray as well, because my then GP just said that I was getting older and things were going to hurt more. I was 54 at that time, 56 by the time I got the x-ray (which revealed 2 crushed vertebrae) and followed by the dexa scan which showed no change in my hips.

So that's 14 years since my last scan. My next rheumatology appointment isn't until June, and I'll bring it up again (depending on how often it gets cancels or re-arranged before then)

[PMRpro Ambassador in reply to ladygigger]

That is disgusting - particularly since early menopause puts you at a much higher risk. AND you have a history of spinal fracture. The mere possibility of one resulted in blood tests, a dexascan referral and medication, all within 3 weeks, when my rheumy saw it!

That GP wants reporting. Mine tried the age card for the PMR symptoms - as a 51 year old who was at the gym most days I wasn't having that and told him so. It didn't encourage a diagnosis out of him though!

[ladygigger in reply to PMRpro]

That GP has, thank goodness, long gone. He also told me to take up to 3200mg of ibuprofen a day to deal with my back pain after the fractures, but without prescribing anything to protect my stomach. Perhaps not surprisingly I now have multiple things that my gut doesn't agree with, diverticulitis (whether that's age or hereditary, not sure - mum had that too). However, I can no longer tolerate ibuprofen or any nsaid at all. I eventually dealt with the pain (after my vertebrae were forcibly re-arranged by a rugby physio) by going for acupuncture. Just wish that helped with PMR! It also doesn't help hip bursitis, which is my main pain nowadays.

[PMRpro Ambassador in reply to ladygigger]

My hip bursitis pokes its head up if I walk a bit further than usual - waiting for an extracorporeal shockwave therapy appointment in March. The awful back pain has improved with a steroid injection in the SI joint and a bit of muscle needling - I can just about cope without pain relief!!!! Just hoping the ECST finishes off the right side triumvirate that seems to crop up and egg each other on!

[ladygigger in reply to PMRpro]

And if all else fails, there's co-codamol or what's left of the tramadol I was given after lung surgery last April.

[Seekingasolution in reply to PMRpro]

I thought my hip bursitis might disappear completely with all the rest I’ve had with this double bunion op … but it hasn’t. It’s definitely better but it’s still there at night time in particular. I’ve just managed to stop taking pred and I am hoping my PMR is in remission. I thought the bursa was connected to PMR. No ?

[PMRpro Ambassador in reply to Seekingasolution]

PMR can "feed" the inflammation and bursitis can be part of someone's PMR. But it can also exist in its own right due to overuse irritating it.

[Seekingasolution in reply to PMRpro]

I’ll nudge my GP again then. I asked at the beginning of December and thought I was just waiting for an appointment but I ll check in again.

[Indigo2417 in reply to Seekingasolution]

Nearly 20 years ago I brought up the subject of a DEXA scan with my then Gp. The background was that my Mum had got osteoporosis and fractured her hip and I’d read that it would be advisable for me to get checked. His reaction was “ I wonder what started you off with that” and more or less dismissed it. Oh how I wish that I’d been a bit more assertive then. I didn’t pursue it. Fast forward to 2019, when I hurt my back and only later in 2021 when I had a private DEXA scan, that I discovered that I’d got osteoporosis in the spine, which had resulted in compression fractures in 4 thoracic vertebrae and osteopenia in the hips. I had to go for a private scan as the NHS one was going to be a wait of 14 months. I was put on Alendronic Acid and Calcichew D3 Forte. I was given physio exercises and I tried to build them up gradually. Then, developed bursitis in the hips, followed by shingles and then last year PMR. I would dearly love to build my fitness up again, but every time I try, something seems to get in way. Come the time I’m due for another scan, I’m definitely going to press for it. I’ve learned my lesson the hard way.

[Floridafan]

At the start of my PMR journey I asked my GP for a DEXA scan which she said was a good idea ( I’m certain that I wouldn’t have been offered one otherwise). I now ask for one every three years and each time it hasn’t been any problem. I refused Alendronic acid on the back of my results.

Having learnt everything I know about PMR from this forum I feel equipped to ask for tests when I think I need them, recently I asked for a cortisol test which was granted without even speaking to me.

I definitely think you should ask for a DEXA scan now, much better than waiting until you have a fall and then find out the hard way!

Good Luck