Not sure I will get a response to this question from you good people on here before the GP rings. I was never offered a dexa scan before being issued with adcal. Is is too late to have one now? I have been on them since February 2023 and wondered if there is any point asking for one.
Not too late, never too late! But you may experience some resistance - some doctors think it isn't needed if you are over 65. And the waiting lists in the UK are - needless to say - long!
And our mantra is: No Dexa, no alendronic acid ...
Thanks. I am not taking AA thankfully so, as DL says, why am I worried. It was just that quite a lot of PMR suffers seem to have been offered one before taking pred and I wasn’t.
As PMRpro says always worth asking - especially if you don’t know the state of your bones.
But Adcal is not as heavy duty as Alendronic Acid -so why are you worried about taking it?
I’m not overly worried, it’s just that most posts seem to say that one should be done before starting pred and it was never mentioned. My doctor says she will ask if I can but it’s not likely I will be given one as I don’t fit the criteria.
Not sure that most are offered one when they are prescribed Adcal or similar -but we do suggest they request one if they are being pushed to take AA.
Ok many thanks for your help.
one of my doctors actually offered one so was glad for him to refer me for one. I take you haven’t been put on Alendronic Acid.
It is pretty standard - pred plus Adcal, as a study found that using a calcium and vit D supplement seemed to provide a protective effect on the loss of bone density in patients on pred. Having a dexascan is mentioned for certain age groups and it is best done within 3 months of starting pred to have a baseline but there is a major shortage of scanners so the waiting times are long. So there is one way of shortening the queues - just don't offer them and assume all women of a certain age will have lower bone density anyway. I have had dexascans all along, the first was a couple of months after starting pred which is when it is said the worst deterioration is likely to happen. I took AdCal for some years, religiously. and then stopped the calcium as it was causing bladder irritation but I eat plenty of calcium containing foods and take 4000 IU vit D which is well above the amount in AdCal and that seems to have done the trick.
If you can get a Dexascan go for it! They are like gold dust.
I was offered a Dexa scan at the same time as I was issued with my first prescription for pred. I would ask your doctor when he phones to refer you for a Dexa scan.
I requested one and didn’t have to wait long at all. (Norfolk and Norwich hospital )
I have been taking AA for almost five years plus a vitamin D supplement when diagnosed with Osteopenia I am due to have a follow up scan after the 5 years.I was diagnosed with PMR in 2021 and now down to 1.5pred no noticeable side effects for me and just booked more blood tests and a medication review. It will be interesting to see the results of my next scan although not booked yet.Certainly ask for one good luck.
"when diagnosed with Osteopenia"
Sorry, got to have a mini-rant!!! I see this so often - you cannot be "diagnosed" with osteopenia, it is NOT a pathological state, it simply means reduced bone density that is typical for your age. Everyone over the age of 35 is likely to be osteopeneic, you achieve maximum bone density at about age 30 and then it tends to reduce slightly as time goes on. And the figures for osteopenia or osteoporosis have very little basis - they were just chosen quite arbitrarily. Most people who break a bone have "normal" bone density.
I am not sure what you are getting at.I do understand about bone density reducing with age and being put on AA to help .So please can you explain thank you.
You cannot be DIAGNOSED as having osteopenia - it isn't an illness or pathological state. It is a natural state that has been medicalised to make profits for drug companies.
So why are people like myself prescribed with AA??Maybe I have misused the word DIAGNOSED.
Because the company that made Fosamax, the first widely used bisphosphonate, had such a successful marketing campaign that all the doctors who were training/working at the time were convinced that it was a wonder-drug and if they gave it to their patients there would never be a broken hip in elderly patients again. Unfortunately, like all wonder drugs, it is by no means perfect and has adverse effects too.
I'm not saying it shouldn't be used - there are levels of osteopenia that DO make its use reasonable but you need to look at YOUR situation and make an informed decision about whether to take it or not. I was handed it automatically with the first script of pred. I took 4 tablets and then, having done my homework, talked to a different GP who agreed it was better to look at the dexascan results first. They were only slightly into the osteopenia range, so almost normal, and we left it. After 11 years of taking pred, the scores had hardly changed, I would have been taking it unnecessarily for all that time, And with longterm use like that there are adverse effects to be considered.
I was told by my "ever knowledgeable and omniscient" rheumy after my dexascan last November, that I was osteopenic. Then after the most recent vertebral fractures fiasco that "oh no, I said osteoporosis". She had then put me on AA which makes me nauseous. Then she said "these mean the same thing, but are loosely thrown around by the medical community". She was scavenging thru my reports at this point, because I had called her on it. I've been.on Rabeprazole long before the PMR diagnosis. Now 2 per day. I recently read that it can possibly make bones brittle! COULD IT BE A COMBO OF BOTH PRED AND RAB CAUSING THE OSTEOPOROSIS? Been taking 4000 D3, K2 and calcium almost since the PMR diagnosis, exception is K2 because I didn't know about it.
"these mean the same thing" - what both mean the same thing? If she means osteopenia and osteoporosis she is talking rubbish. That is like saying exam marks of 1-4 (as the pass grades available) and 6 (a fail) are the same.
Unless of course her medical school worked on that premise and she scored a 6 but they still awarded her a medical degree ...
Yes Pro. That is what she said and they just throw the two terms around. Of course, this is coming from a rheumy who "never heard of a vertebral plasty." That is also what she said.
Drivel. Has this woman even got a medical degree?
I was put on AA in May this year, along with pred + Adcal. Problems with PMR and pred started to arise for me in August (see previous post). I am now reading up on PMR and the drugs. As a former A'level maths teacher, I can only say that you would need to have studied some higher level statistics to understand how the so called 'diagnosis' of osteopenia/osteoporosis works. I have now stopped AA due to the side effects it had on me and what I have learned on here from all the long term contributors. Will see where that gets me and use my statistics knowledge to assess my personal risk if and when I get a bone scan. Thanks PMRpro
The cut off between the two was just a number plucked out of the air - a bit like the 10,000 steps a day. In the latter they have now found that the effect peaks at about 4000 and the gain after that is not great. But it sounded good. What it actually has achieved is that many with a chronic disorder have decided there is no way they can get to 10K so it isn't worth bothering at all.
Denser bone isn't necessarily stronger bone and the rate of hip fractures was already falling when they were doing the work. But it provided an amazing basis for the marketing. What doctors learn at a particular stage of their training is very hard to dislodge. I would consider something if my bone density was very poor - but on the other hand my tiny great aunt who was about 6st/80lbs soaking wet, who had PMR for years, without pred as far as I know as it was the 1950/60s, lived to 88 without breaking anything.
Food for thought indeed. The pharma industry is fantastic at marketing. Just watched a drama doc series on Netflix about a pharma company & the Opioid crisis in the US. Also, recent Panorama programme re:SSRI's. Having said all this, I am grateful for pred taking away my pain. But need to find our own path through it all.
I do not know if this will help or not but, I had a Dexa scan in June of last year when I was 81 years young ! I had been on Pred since the previous August and taking the adcal AND AA and all was well. I think my GP is always concerned re. my calcium as I am so intolerant of Dairy ( I come from Cornwall but NO cream for me ! 
) so I do seem to be bucking the trend re. age etc etc . all very best wishes
I have had three. The 3rd one last week.Have osteospirosis. Waiting to hear if my numbers are worse as 4 vertebral fractures since Nov 2022. 6 in total! So I would say yes then at least you will know what you are dealing with bone density wise.
Hi, I’ve had PMR for 3 years. When first diagnosed I asked for a DEXA scan but was refused by my Rheumatologist. I was put on Alendronic acid which badly affected my gut. I’ve now had 2 scans with a private company ( around £200 per scan) to keep a check on things myself. I no longer take Alendronic acid and will only do so if my bone test results warrant it.
I had one in July towards the end of taking prednisone it came back normal I have had and zoledronic acid infusion.
I'm waiting to get booked gor the same infusion. What side effects, if any?
I was told by the infusion nurse 1/3 may get side effects and to take paracetamol. Being positive I assumed I’d be the 2/3 who don’t. Wrong. Didn’t take paracetamol and woke up about 2.00 am shaking and shivering. Felt rough for a day or so. This was pre GCA. You may be luckier than me. I’m due another infusion this year and will definitely take the paracetamol and clear the diary for a couple of days just in case I suffer again.
I had no side effects first time round. I am due a second infusion end Sept but had to delay it due one one occasion it being a few hours before a flight second occasions testing positive for covid third time hopefully ok. I am told there can be side effects but have not experienced any personally
I haven’t asked for a Dexa scan but got sent an appointment anyway. I haven’t been prescribed Adcal or AA, been on Pred since April this year. I must be lucky where I live as I had to cancel my Dexa appointment last week and within days got a new appointment for in 2 weeks time!
Wow, that’s amazing. My GP said the waiting list for a dexa scan was 18 months! She read out the criteria for eligibility and I didn’t fit, so I don’t hold out much hope. Which part of the country are you?
I’m in the South Lakeland area but we come under the Lancaster and Morecambe hospitals. My appointment is at Westmorland General hospital which is in Kendal. It’s amazing the variation in waiting times across the UK
If you have a scanner, the catchment population for it is probably not enormous so the waiting lists are OK.
Bad dexa scan
Update on dexa scan refusal
Update on dexa scan 
latest DEXA scan
PET scan while on 20mgs Pred
