To all UK members should I ask my GP for a dexascan, is this meant to be done routinely please?? Thanks

[Wraysbury]

Dexascan

[1964-karina]

Hi, not sure really I had to ask the doctor who looked at me and said why do you want one? I replied because of the steroids! Doctor then looked online and said well yes if you want one I will get you an appointment! At this point I had been on steroids for nearly 2 years. So in reply to your question you may well need to ask for one yourself.

[Wraysbury]

! Ok. Thanks.

[SheffieldJane]

It is certainly good practice for people on steroids with their known detrimental effect on bone density. A lot of us seem to have to prompt a referral. It should then be repeated in 2 years time. Some physicians seem to believe that a prescription for Alendronic Acid or similar, whether indicated or not, is all they need to do. As these are powerful drugs with potentially horrible side effects, I was not happy to take them without Osteoporosis clearly apparent on my bone scan. My first scan was good. I await the results of the second.

[Wraysbury in reply to SheffieldJane]

Thanks

[PMRpro Ambassador]

According to the guidelines yes for patients under 65 - they assume at 65 your bone density sort of crumbles...

You need one soon after starting pred really to get a baselines and then they should be done at 2-yearly intervals to see what happens. I was young, 57 for the first, but my bone density has barely changed despite at the last one over 7 years of pred. And that was without alendronic acid, nothing but calcium and vit D. I was given AA by one doctor, together with the pred, I discussed it with another after 4 tablets and we agreed to wait for the dexascan result. I never took another AA.

[Wraysbury in reply to PMRpro]

Thanks

[piglette in reply to PMRpro]

It looks like the NHS are increasing the time between scans as there seems to be a shortage of scanners in U.K. It seems the shortage is actually of every sort. Our scanning machine is the only one in the county and we only have one because we fund raised for it. Camilla, Prince Charles’ wife, opened the facility. I think they then had trouble finding operators and complained about these do gooder fundraisers raising money for the equipment but doing nothing about salaries.

[PMRpro Ambassador in reply to piglette]

That's guff! My husband had the dexascanner in his department, he had staff who ran it and the service was good. It was getting old and they knew they needed a replacement - and a load of "do-gooders" offered the capital funding. There was no need for on-going funding at all - but the powers-that-were still turned down the offer. He was absolutely furious.

[piglette in reply to PMRpro]

Tell your husband I commiserate!

[Wraysbury in reply to PMRpro]

Unbelievable 😩

[Wraysbury in reply to piglette]

Thanks 😟

[Daisychain12 in reply to piglette]

Oh my gosh I am aghast xxxx

[PMRCanada]

My Rheumy suggested it and I had mine done within 3 months of starting pred and said it would serve as a baseline. I find out the results at my appt with Rheumy today.

Fingers crossed!

[Mikb]

My doctor in Canada sent me for one at the beginning of the pred journey, and then again a year later. She was upset when I told her I quit taking AA but after my second scan showed no decrease in bone density, she hasn't mentioned it again.

[MhairiP]

When I was first diagnosed with PMR, the GP wanted to prescribe alendronic acid along with pred, but I declined. I have since spoken to another GP and she is sending me for a scan to see if I need AA - my appointment is in 4 weeks, so I'll see what happens after that. I don't want to take AA unless I absolutely have to - I'm certainly not taking it 'just in case'!

[Bamber99]

Hi I was diagnosed last month. Had a dexascan last week. GP arranged appointment on diagnosis. Unless you have an early one you won’t know in the future whether the meds have impacted your bone density.

[MhairiP in reply to Bamber99]

Your GP seems very on-the-ball compared to many others! I have my scan in October - have been on pred since July.

[Bamber99]

In addition to my previous post I am also taking calcichew D3 forte plus trying to include more calcium in my diet. Specifically skimmed milk daily , i previously rarely had milk. I am also ‘thinking ‘ about trying some resistance exercises at home. However so far just thinking about that...not really my thing😰

[Hidden]

When l went for my first scan, they also measure your height, but the level that comes down to rest on your head was jammed, l told her l was 5’7” but she shrugged & pushed me under it & recorded me at 5’4”

Now your height is also important when checking for Osteoporosis!.......

Roll forward 3 years & they duly measured me at 5’8” (an extra inch for the crown of my wig) l said l’m 5’7” ~ l was last time & explained what had happened but No she obviously didn’t believe me & said ‘How Can You Have Grown 4” in 3 Years’?!?

I said l’d leave it with her!........

[Telian in reply to Hidden]

OMG so funny Angela, it's good to laugh but who can we trust really.......

I once had a dermatology consultation and never had my follow up appointment as the consultant wrote to my GP saying that I was moving to Scotland and promptly discharged me....

[Wraysbury in reply to Telian]

What??!

[Hidden in reply to Wraysbury]

I know, you couldn’t make it up! 😂

[Telian]

It should be done routinely, I had my first one on diagnosis and bi-annually since. Tried on AA but reacted badly to it - was given Adcal-D3 so some protection is needed on long term steroids. My Dexa results show I'm in good condition, above average they said, for my age but don't suggest taking me off Adcal. Ask for a scan and don't be put off.

[Primarose]

Hi Wraysbury, on my first and only visit to Rheumatology, I was booked in for a Dexa scan straight away. I was told that it was routine for patients on long term pred.

They have a scanner in their department.

[GCA1947]

I am man with G.C.A.-With Klinefelters Syndrome I had this since birth, and developed Osteoporosis sometime between thirteen and forty-six, I know this because two of my upper spine discs fused and curved before I was fourteen. The Endocrinologist who diagnosed the Klinefelters said you must have a DexaScan every two years to check on the condition of your bones and I had no. 11 on 22/08/18, to discover that my spine has improved substantially that it is now falling just in the osteopaenic range, pity I an't say the same for the hips.

Nuffield Hospital said I was the only one with Klinefelters who they are scanning on their machine. Klinefelters is VERY rare. I was just unlucky.

Regards

Colin