Does anyone know when or if I am likely to need/be offered a dexa scan? Will symptoms occur which may lead my doctor to suggest one or this a routine procedure when one has been taking pred for a certain length of time?
At what point is a Dexa Scan necessary? - PMRGCAuk
At what point is a Dexa Scan necessary?
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Lclmlbls
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Dear Lclmlbls,
Your Doctor/ Consultant is, in all probability, just being 'Cautious'- which isn't a Bad idea, after all. I have had a number of DEXTA scans, over the years, as I am on Pred. permanently. In my case 'They' only Do them, about once a year (or Less), as I Don't Appear to be loosing Bone Density..... Thankfully!
By all means Do 'Speak' to your Doctors Lclmlbls, if only for re- assurance. Try NOT to Worry, my friend.
AndrewT
Hello, I asked for one as a baseline and refused any bone hardening meds until I had one. It turns out I already had osteopaenia so if I had had a scan, say 2 years after Pred it would have been blamed on the Pred, when actually I had lost 10% in the years prior. It also turned out that my level of osteopaenua didn’t require bone meds. Being on Pred for 3.5 years starting at 60mg caused a further 3-3.5% loss and still no meds needed. Some people don’t suffer any bone loss on Pred. Osteopaenia or osteoporosis don’t have symptoms unless you sustain a fracture from it.
Some doctors see it as sensible to get a baseline but many I’ve met don’t even consider it. I have been told there is no point in doing it more than about every 3 years, 2 maximum. I was also told that Pred effects on the bone don’t really show before 3 months.
I requested a baseline DEXA scan and the GP outright refused. So after being on Prednisone for one year, I finally had a DEXA scan, which showed osteoporosis in my spine and osteopenia in my hip and femur. I really would have liked to have known what the levels were prior to Prednisone as I'm sure I was already in osteopenia range for all 3 areas tested, but I guess I'll never know. I will ask to have another scan at the 3rd year anniversary of taking Prednisone (2 years after first scan). Hopefully I won't have to fight for it. I seem to recall my rheumy saying something about every three years.
DorsetLadyPMRGCAuk volunteer
Ideally you should be offered one at outset to judge the state of your bones too see if Alendronic Acid is required - but unfortunately that rarely happens, even before the current NHS crisis.
Pred can weaken your bones and make some more susceptible to osteoporosis - have you been prescribed a VitD/Calcium supplement.
maybe have a read through this -
nhs.uk/conditions/dexa-scan...
Or look at the ROS site for more info-
PMRproAmbassador
A dexascan should be done within 3 months of starting pred to get a baseline reading. Then repeated at the intervals available - preferably 2 yearly but in the UK these days either seems pie in the sky!! There is little point doing them more often tha 2 yearly in most cases - bone density doesn't usually deteriorate rapidly.
As Snazzy says - you need it then so they don't use the default blame game saying it is pred. Like her, I refused a bisphosphonate until I had the results - it was agreed it was such that I didn't need one and I never have taken anything other than calcium and vit D. I do need another I suppose - the last after 11 years on pred was fine but had deteriorated slightly in the previous 4 years.
Many thanks for your replies. A dexa scam was never mentioned by my GP. I had one last week along with various MRIs and other tests as part of a BioBank assessment for research purposes. Unfortunately part of the agreement is not to have access to results. They may inform patients if they discover something life threatening. Dexa scan results of course doesn’t fall into that category. I will mention it to my doctor at the next assessment.
It might be worth appealing for the results because you are on treatment that directly affects the bones.
sadly I don’t think it would help to ask for them. They are very clear that one will not have access to results. All those taking part have to sign the agreement that states that.
after 5 yrs on pred, AA and Evacal D3 I asked if I could have a DEXA scan. Doc telephoned to say scan results ‘satisfactory ‘ therefore I could come off AA especially as it’s not a ‘nice’ medication!! Apparently my next scan will be in 2yrs time which I’m lead to believe is the norm. (The scan was quick and simple by the way)
If you have PMR you should be offered one on diagnosis and then every two to three years depending how often the NHS will let you have it! Three years where I live.
Hi Lclmlbls🙂I had a dexa scan last week and was told I might be asked to go back in 18 months and to tell the gp nearer the time so that they can refer me.
It went well.
Best wishes
🤗
I refused the standard Alendronic Acid for 6 months. I asked for a Dexa scan after the GP kept asking me why I didn't want to take AA and I got the scan when I explained it was because of potential side effects and because maybe I didn't need AA Results showed osteopenia so I'm taking AA now. Guess we're both 'happy' now!
But virtually everyone of our age is osteopenic - maximum bone density is at about 30 or so.. After that the density of our bones rarely increases but falls slowly. The t-score is the deviation fron the maximum of the graph. It is a question of degree, A t-score of -1 is normal, -1.1 is osteopenic but so is -2.4 while -2,5 is the start of the osteoporitic range. If you got a score of -1,1 or -2,4 then the report says the same but there is a massive difference, Scores better than -1,6 are usually deemed to only require calcium and vit D - which have been shown in studies to slow loss of bone density with pred.
I was 2.4 x 2 of the measures and a 1.8. Luckily 2 months into AA it's not disagreeing with me so far and I'm almost enjoying the extra hour in the day when I get up early once a week to take it (got to look on the bright side!).
I have just had a dexa scan having started prednisone for gca in Dec 21. I had one zoledronic acid infusion in July 22 and am awaiting another this July. Any further infusions after that would depend on the dexa scan results. I hope to finish prednisone within the next couple of months. I have taken adcal during this time also.
no idea what a dexascan costs but I have come across a marked reluctance from GP and gerontologist (!) to request one at less than 3 year intervals. The consultant’s argument was that there is quite a big margin of accuracy and doing them too frequently could be misleading. But definitely have one if offered!
Here they are supplied by a local private hospital, the patient can request one even without a referral by an "NHS" doctor and we pay the same co-pay, 37 euros! In the UK it is possible to get a private one for £100 at Southampton who give you the results the same day.
uhs.nhs.uk/departments/rheu....
Other private options are available - for notably more needless to say!
I haven't had a DEXA scan and I refuse to take any more AA until I get one. I took the first two in the pack and both days spent the rest of the day sitting on the toilet feeling dreadful. I'm not doing that for one day a week, without knowing that I really need it.
My GP booked one within a few weeks of starting steroids but as to when it will actually happen is anyone's guess. In the meantime I will keep refusing the drugs. I asked the rheumatologist and was told not to worry too much as I'm supposedly low risk
That's interesting, what makes you low risk?
Believe it based on combination of young age, solid build and lack of family history
Hmm - some people get nasty surprises when they have a dexascans - which are more all-seeing and effective than a crystal ball ...
Agree - it was a silly response !
I just had a bone density test after being on pred for 15 months. Praise God it was normal because I read that the damage might be done in the first few months of taking prednisone.
Of course ,we read a lot that might not be the case!
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