Recap of Bio, if needed. 67 year old female. Diagnosed PMR and started on 15mg Prednisolone July '24. Until then healthy and active, apart from OA for 30 years in some fingers/1 toe. Currently on 10mg and midway between being on for 2 months before GP review on 25th. Yo-yoing before, some of which down to me with the attitude of getting off within 2 years, not! Take Vit D3, 1000 and recently, reading on forum, Vit K2-MK7 200. Other basic supplements too. Never been advised to take Calcium but although think have good diet I've increased natural intake. I don't need persuading to eat cheese/Greek yoghurt! Walking a big part of my life and back to that whilst being mindful of doing too much.I brought up subject of Alendronic Acid with GP, as friend on it. He thanked for reminding him (wishing I'd kept quiet now). He prescribed and arranged Dexa scan. I haven't taken it as wanted results firstly and after reading pros/cons very much leaning towards not wanting it at all. The results are in and as follows:-
AP-Lumbar spine(L1-L4) T -2.1 (not good?)
Left total hip T -1.3
Left femoral neck T -1.5
Corresponding Z scores:- -0.3, -0.3, and -0.2
WHO classification-Osteopenia
10 year Fracture risk (forearm, hip, shoulder of spine)-11.97%
Hip-1.95%
I've looked in FAQ and so many other posts but hard to take in and feeling quite overwhelmed, not least because don't fully understand. I'm still thinking I'd rather not take AA but worried either way. Recently got over a nasty cough, diagnosed couple of weeks ago with a prolapse, my decision making a see-saw and brain like mush😢.
I realise bone density isn't the full story, as excellently outlined by PMRpro and DL.
Would really appreciate members thoughts and perhaps those with similar results what affect it had on their decision to take, or not, AA. Not entirely sure how bad it is for my age?
Thank you for listening and being there. I've learnt so much from this site and although no qualms really about care from GP I would be in the dark about GCA, adrenals etc. without this Forum.
Written by
Gc2596
To view profiles and participate in discussions please or .
As commented your results do show osteopenia [not unusual at our age], but that doesn’t necessarily mean it will turn into full blown osteoporosis…
You say you have plenty of calcium in diet. , but Pred does leach the calcium from bones which is why a calcium/vitamin D3 supplement should be have prescribed initially - GP obviously didn’t read that either…
Perhaps go down that route initially - and have a think about the AA.
For the record I took it for 4 years with no problem whatsoever, thought it best due to personal circumstances but it doesn’t suit all…and it’s a bit of a marmite scenario!
Don’t want to overloadbrain even more but maybe call the ROS helpline to discuss -theros.org.uk
Thank you DL. I had seen another post where ROS had been contacted and found helpful. As I mentioned, GP appointment later this month so will have to explain why I've not already started AA and assuming don't my reasoning. Calcium supplement of 1000mg mentioned along with Vitamin D3 (800-I take 1000) and AA on Dexa report. Is the calcium supplement something the GP can write a prescription for or just obtain over the counter myself?
Thank you for that. As it's 2 tablets daily does that equate to 3000/800? My current D3 as I said is 1000. I'll certainly bring this up at my appointment and to be honest this is more what I was thinking about when I queried about needing something additional originally.
Yes -it is Calcium3000mg/VitD3 800iu. So at the moment you are taking more VitD, but probably not enough calcium…and that’s what the Pred leaches from your bones …
They are much the same as mine were at the start of pred, over 16 years ago, though I think my lumbar score was a bit better. I discussed it with a different GP and we agreed, AA didn't seem essential, we would monitor it. Some years later the local osteoporosis guru was determined I should take a bisphosphonate - I said no! The next time I saw her she looked at my latest dexascan result, said she'd never see such results in a patient on pred - keep on doing what I was doing.
Fast forward a year or two and I developed very bad back muscle spasms - the most common cause is spinal fracture but nothing was to be seen on an x-ray. A year ago another x-ray showed one spinal compression fracture in the lumbar region that was painless, though I still had soft-tissue problems. We agreed on a course of 3 bisphosphonate infusions at annual intervals. After the first, the back pain slowly but steadily improved, I had the second a few weeks ago - further improvement. I will have one more and then get a 3 year holiday - studies have shown 3 consecutive infusions are as good as 6. The first didn't cause the common flu feeling - it did wake up my atrial fibrillation a bit but it went away and this year, nothing.
On balance - I had 13 years without a bisphosphonate. In her talk to the Yorkshire group, the Leeds expert inferred that our baseline dexascans are borderline for no bisphosphonate. My dexascan after the fracture was only just into the "you definitely need a bisphosphonate" range. What you don't know is how the pred will affect the density and the trabecular structure. I can have a dexascan on demand if I pay the princely sum of under 40 euros! In the UK it is a different matter and while I would say, check in 2 years - maybe you won't get a scan when you want/need it. I'm glad I did it the way I did - I have Long PMR so have slugged a LOT of pred over the years and it wasn't a dramatic fall in bone density. I escaped many years of AA. But it might have been very different.
I've read your 'journey' in several posts from yourself, very informative useful and enlightening. When I think how well informed I'd be without this Forum it amounts to very little. Dexa report advises another scan in 5 years. I'm very much in the mind I will delay taking AA for now and concentrate on alternatives. I will also look into whether it's possible to have a private Dexa scan in a couple of years if not possible via the NHS. Also, will have to see how my tritation progresses going forward. Once again thank you for your input.
Hi Gc2596. I've a poor diagnosis from a DEXA scan 2 years ago but refuse to take bisphonates. I have, like you, taken Vit D3, K2, also Mg and lots of Ca from fat free natural yoghurt. I am waiting the results of a recent second Dexa. Have you tried the FRAX test ? It adds in all sorts of criteria that affect bones like family history and so on.
Im in a similar position, results nor far off yours, osteopenia and not yet discussed with GP (thats next week) and I just started some basic weight training (personal trainer as I wasnt confident in what I should be doing) with the idea it should help bone strength. I already walk a fair bit. I'd prefer not to take any extra medication if possible. ROS have exercise guides
Thank you for sharing. Yes, many similarities in us and the Dexa scan results now too. You however, are titrating and obviously feeling well with it at a quicker rate than myself. I did get down to 5mg November '24 but kidding myself that if I coped with the return of aches I'd get there. Ostrich comes to mind! I do remember that when I queried the need for calcium supplements a locum GP (I've seen the same GP all other times) said as coming down didn't need them. At that point taking 7.5mg. It will be interesting to know the outcome of your review and what decision you take.
My GP from the off gave me a diet sheet for calcium. Got the impression they weren’t keen on supplements. After a year another GP out the blue added supplements and Alendronic Acid to my prescription so I requested a DEXA scan which showed I was borderline osteoporosis and the notes recommended taking AA as preventative measure until I got to below 5mg Pred. Today I have tentatively got there so will be stopping AA. Yay! My GP left the decision to me so why did I take it ? Because over the years I have had several scans as part of longitudinal research at Bristol University. I did have well above average bone density so the drop was a shock for me. As for the supplements - I didn’t take them but ran my diet past my GP who was happy. I upped my Vit D, I was already taking vit K2. With hindsight I should have taken AA during the first year of Pred, not the second, but it wasn’t offered, and knowing me I would probably have taken the same risk/pathway. Hindsight is a wonderful thing. These days I do 50 heel drops daily and have invested in a weighted vest.
Thank you for your own insight. I noticed that you had a private Dexa scan. The report suggest my next one in 5 years. However, seems a long time whether or not take Alendronic Acid so you don't know whether progressing or regressing. I'm thinking whatever I decide 🙄 I will look into having one earlier. Different GPs it appears certainly take differing stances regarding vitamins etc. I intend having a chat with the ROS so will see if that helpful in coming to a decision. Once I've made a decision I'm generally fine, it's the getting there!
I went private because it was available the next day! I would have to wait several months for the NHS scan. The prescription for AA was so random and really worried me. And as I'd been stuck on 11mg of pred for several months at that time I thought it best to find out more info sooner rather than later. My GP has put in my notes my request for a scan (NHS) in two years time. Two years being the minimum time. If your results are okay that's maybe why it's 5years for you but you have a good case (long term steroids) for requesting one sooner. I had 2 long chats with the ROS and it really helped.
I think some rheumatologists take the view that if you are going to be on long term steroids (particularly starting on a high dose) it’s best to start protecting your bones at the outset . May be an age thing but certainly what I was told - I was aged 75 at diagnosis (Dexa scan 6 months before for another issue had been fine) I was prescribed Adcal-D3 plus Alendronic Acid. When I read about AA I thought no way as I’ve always had difficulty swallowing pills. Instead I’m having an annual Zoledronic infusion. Whilst I probably didn’t need it at this stage I took the view it was better than waiting til osteoporosis crept in on top of everything else. So many choices we have to make as what’s right for one may not be so for another.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
DXA Scan
Dexa scan results meaning
latest DEXA scan
dexa scan
Dexa Scan Results
