Dexa scan refusal: Hi, this is my first post after... - PMRGCAuk

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Dexa scan refusal

Yorkgirl2 profile image
88 Replies

Hi, this is my first post after being diagnosed with PMR November 2023. The information from everyone on this forum has been invaluable, thank you. I started on 15mg Pred and now with the support of my very good GP, I’m slowly tapering and now on 12.5 and reducing .5mg every 4/6 weeks. At the beginning my GP put me on AA tablets, but in January he took me off them as the caused real problems with my stomach even though I was taking omeprazole daily. Too be honest, I wasn’t keen on taking AA but went with his advice. At my last appointment he thought I should consider alternative treatment to protect my bones. I can understand his feeling that prevention is good but I asked if I could have a Dexa scan first. There is no history of osteoporosis in my family, in fact my lovely mum who is 95 has had quite a few falls and has bounced, thankfully with no nasty damage! The GP agreed to my request and said he would request this. I have just found out that the request has been denied and to contact my doctor regarding treatment. Not too sure what will happen next as I’m still not too keen on taking more medicines if I don’t need it, but how do I know . I’ll make my appointment as I know my GP is very supportive, but wondered if this has happened to anyone else. Many thanks to everyone

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88 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Did your GP prescribe a VitD/Calcium supplement? Many find that is quite sufficient to protect bones…

Guidelines do state DEXA scan not required if patient over certain age….what age are you.. and what reason was given for rejecting scan?

Yorkgirl2 profile image
Yorkgirl2 in reply toDorsetLady

Hi, yes my GP prescribed VitD/Calcium supplement. I’m 73 but until I see the GP I’ve no idea why the scan was refused.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toYorkgirl2

Age may be the factor then, if a jobsworth made the decision.. but it would be nice to know. Guidelines say 65 and older…

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Which can be totally meaningless these days - I know 2 ladies who are well over 80, never took bisphosphonates and their bone density is normal.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

It is, but in many fields the powers to be don’t look at patients as individuals most of the time do they…

Yorkgirl2 profile image
Yorkgirl2 in reply toDorsetLady

Yes, I’m thinking the same. Thanks for all your help(not just for me). I’ll make an appointment with my GP and see what he says but I would prefer to keep on with the VitD/Cal without taking anything else. It would just have been nice to know the state of my bones now and the the decision would have been easier

Poshdog profile image
Poshdog in reply toDorsetLady

Why the age cut off? Are we expected to crumble after 65?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPoshdog

It seems to be the age* that most international organisations suggest that it’s much more difficult to retain/increase bone mass, even without using steroids.

*females 65, males 70…

Its known that steroids may leach calcium from bones, so I guess it’s assumed that patients on long term use will require a bisphosphonate and therefore a DEXA scan not required.

Poshdog profile image
Poshdog in reply toDorsetLady

Thank you, that may explain why never offered DEXA scan as over 65 when PMR started. Having now requested one at 75 and allowed one (still waiting for results) it will be interesting to see what it says. Not sure entirely useful as no base line to compare 🤔 xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPoshdog

No, not that useful as no comparison- but at least you’ll know the state of them now..

Donna5658 profile image
Donna5658 in reply toDorsetLady

What dosage of calcium/vitamin D do they usually recommend?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDonna5658

Usually Calcium Carbonate 1500mg/Vitamin D3 400IU per tablet- taken twice a day.

Donna5658 profile image
Donna5658 in reply toDorsetLady

Thanks!

Donna5658 profile image
Donna5658 in reply toDorsetLady

Just to clarify. Is it both 1500 calcium and vitamin d 400 IU twice daily? So a total of 3000 mg calcium daily? And 800 Vitamin D?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDonna5658

Yes that’s correct….

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDonna5658

this is quite a common one - should be prescribed -but as you can see also able to purchase..

chemistdirect.co.uk/adcal-d...

PMRpro profile image
PMRproAmbassador

It seems to depend on a lot of factors, not least region and availability of NHS scanners. But a bit more info would be helpful as DL says.

Blearyeyed profile image
Blearyeyed in reply toPMRpro

Yes, it's also knowing whether the request was denied by the Management at the Surgery or the Dexa testing centre.I've found that this can make a big difference in knowing whom you need to get a medical explanation if the refusal from and whom complain to.

Recently , I've found the GP has received refusals from the lab or hospital.....but I've also had a few occasions when the practice managers refused to move forward with a referral or test because of costs as a blanket refusal without looking at the individual circumstances and the fact that the guidelines recommend it.

piglette profile image
piglette

It always amazes me that doctors prescribe AA without checking a Dexascan first. I would have thought it would be common sense to see if a patient required a drug before just giving it to them, but it does seem that common sense does not seem part of the NHS any more.

Bcol profile image
Bcol in reply topiglette

Sadly, there seem to be a lot of areas of life and decision making by the powers that be, where common sense is the last thing thought about or even considered.

piglette profile image
piglette in reply toBcol

So true

PMRpro profile image
PMRproAmbassador in reply topiglette

AA is so cheap they think it is cost-effective to assume all over 65s have poor bone density - and of course most will have some degree of osteopenia. But that is medicalising a normal process.

However - NICE have a bit of egg on their face this week about cost effectiveness don't they!!!!

piglette profile image
piglette in reply toPMRpro

NICE have messed up a bit, but not as much as the NHS. My surgery now does not accept questions by computer when they are not open. I think now all the doctors there are also private.

PMRpro profile image
PMRproAmbassador in reply topiglette

Well no - I was working in the NHS when the bloods thing was going on and we were all horrified. It was a disaster waiting to happen - and it happened. Absolutely disgusting.

piglette profile image
piglette in reply toPMRpro

I remember it all happening and assumed that it had been sorted out in the last century, but NO! Quite horrific. Government does not seem to care about individual human beings.

PMRpro profile image
PMRproAmbassador in reply topiglette

Don't care about anyone but themselves ... Oh no, I knew it was all being denied and hushed up, Like a few things.

Blearyeyed profile image
Blearyeyed in reply toPMRpro

My best friend is a contaminated blood widow.Her husband died very early when they were in their twenties.

She married again with two lovely daughters but the trauma of how they were treated by the Health service , and knock on effect of the abuse and prejudice they both suffered from the community because of what he was diagnosed with has never left her.

Plus, the long term effect on her ability to get things like mortgages , insurance and loans lingered on.

So , much so , that she'd stopped telling people what her husband died from and would say it was Cancer because she was always anxious that people would judge her and her family.

I didn't even know until she had to take part in the Inquiry and decided to explain why she was struggling.

She's just had to revisit it all for the Inquiry and it's been like pulling the scab off a wound.

Ok, so she's finally getting compensation which she deserves , but that doesn't do anything to make having to relive a trauma that you've had to suppress for 39 years to live normally each day any easier to cope with.

PMRpro profile image
PMRproAmbassador in reply toBlearyeyed

Too little and far too late to coin a phrase. And it never really compensates.

Blearyeyed profile image
Blearyeyed in reply toPMRpro

Especially, as she's spent the last three years with her illnesses flaring from the Stress, and will have goodness knows how many years getting over reliving the trauma again just to get the acknowledgement she deserved.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topiglette

I noticed the OOH block when I tried to send an eConsult one evening… didn’t want an appointment, but to notify my blood pressure readings I submit quarterly…. 🤦🏻‍♀️

piglette profile image
piglette in reply toDorsetLady

I just don’t understand the reasoning. They can always store the message until they are able to read it, like the rest of the world.

PMRpro profile image
PMRproAmbassador in reply topiglette

Maybe they are too depressed when they open the emails to find a couple of hundred!! Same number whenever they look at them ...

piglette profile image
piglette in reply toPMRpro

I have sometimes suspected that they take the attitude that if they block off as many of the routes as possible to access them, they will not have so many people contacting them. Even the media is asking do they really care about the patients any more.

PMRpro profile image
PMRproAmbassador in reply topiglette

Very much depends on the practice I think. And I suspect the morale is steadily sinking further and further.

piglette profile image
piglette in reply toPMRpro

I so agree.

JGBH profile image
JGBH in reply topiglette

Totally agree. Overprescribing of drugs for osteoporosis, often when it’s only osteopenia, which can actually do more damage long term before even doing a Dexa scan is wrong. Not good medicine. Checking first should be primordial. Also Dexa scans can give false results depending on the model of machine used and on the clinician doing the scan. If one cannot be totally flat because of pain then the results won’t be accurate. I also noticed that often only the T scores are given omitting the Z scores which give a more accurate result. All drugs prescribed for osteoporosis do not actually rebuild strong dense bones. A good diet plus Vitamin D plus vitamin K2MK7 and magnesium supplements will help in getting stronger dense bones plus exercises for those who are able to exercise. Calcium should only come from food sources. Vitamin D and K2 should be in olive filled capsules for better absorption - both being fat soluble. A few years ago I was ´forced’ in taking such a drug (Prolia/Denosumab) by scare tactics. Unfortunately I didn’t know much about such drugs… I have regretted it since as I got rebound spinal fractures when I had to stop having the injections before important dental work. I was not even told by the medical staff this would be a strong possibility. So people do need to inform themselves as much as possible when being pushed to take such drugs.

PMRpro profile image
PMRproAmbassador in reply toJGBH

" also noticed that often only the T scores are given omitting the Z scores which give a more accurate result. "

That isn't true. The z-scores compare you with others of the same age. Many of whom are also osteopeneic or even osteoporosis. If you are the same as them, it doesn't mean that you are unlikely to have problems. The interesting evidence is how much bone density you have lost compared to being young and with peak bone density. Comparing rubbish with rubbish tells you nothing - it will look as if that is the rule.

Your statements about diet and activity are also not entirely true - you can develop low bone density even when you are eating well and active.

And your Prolia experience wasn't because they omitted to tell you - they didn't know. As soon as it was discovered the rebound loss of bone density, the procedure was changed and if you start on Prolia now - and it is a very impressive way to create bone - you will either remain on it permanently or switch to a bisphosphonate to maintain the bone density gained.

JGBH profile image
JGBH in reply toPMRpro

I am afraid we will need to agree to disagree to a certain extent.

One cannot really compare peak bone density when young since this, to my knowledge and experience, is not tested when young, unless one experiences problems. Therefore comparisons can only be made according to an estimation of what values should be in a general population. Of course we all differ, different frames, health, etc. Therefore different results. Therefore not exactly accurate.

Of course if one has absorption issues even a good diet and healthy eating (and regular exercise) might not help 100%. However, in my experience and that of a few friends, having tweaked our diets meant that our Dexa results had not become worse. That in itself is evidence that it does work if done properly and regularly, also, I do have absorption problems. The osteoporosis ´consultant ´ who was so keen to push for the drugs had to admit she was impressed with the fact there was no further deterioration shown following the 2nd Dexa scan.

Furthermore as for NOT knowing the dangers that patients who are pushed onto Prolia and the likes is really unacceptable. Why take such a risk with peoples’ lives if they are not sure of the outcome of using such a drug ? Where was their evidence ? Clearly not enough research done, not for long enough obviously. So patients have been used as guinea pigs. Not acceptable when one suffers a life changing situation because ‘they didn’t know’. In my case it was only oestoepeania not even osteoporosis . I am resentful and quite rightly as I am paying a heavy price for their lack of knowledge but nevertheless ´let’s try it’ approach. I clearly should have stood my grounds and refused, as I do now.

Furthermore I couldn’t take biphosphonates. Many people can’t.

In fact no drugs have been discovered yet that truly help with osteoporosis. Perhaps one day.

I do understand research advances by leaps and bounces, with ups and downs as well as financial investment and time. I do hope that an efficacious treatment, without all the unpleasant and debilitating side effects, will be found to treat osteoporosis in the future.

PMRpro profile image
PMRproAmbassador in reply toJGBH

My point was the z-score is pretty meaningless. What is of interest is the change from the usual level in young healthy adults and many scans have been done to establish that - and that applies whatever the age is. Our line on this forum is also NOT "just in case" for similar reasons to those you quote.

Pol53 profile image
Pol53 in reply topiglette

Yes I am 52 still awaiting dexa scan was put on AA and calcichew d with the pred

piglette profile image
piglette in reply toPol53

Quite a few doctors seem to go straight for the AA without checking for osteoporosis, which I personally do not agree with. I fought for a Dexascan even though I was told I did not need one. I really feel we should not be taking AA if we do not need it.

Pol53 profile image
Pol53 in reply topiglette

I agree I am going to stop taking the AA and keep taking the calcichew until I get the dexa scan I will phone them to tell them this maybe they will chase up the scan I feel awash with pills atm I have so many side effects they are starting to worry me more than the Pmr and because I’ve been shoved in so many new pills I don’t know what is causing what so I feel like taking ones I possibly don’t even need on top is too stressful - I also have a loose tooth which is agony I’ve only been on AA since 26 of February 24 i wasn’t given any information about it affecting dental work I’m terrified of dentist and barely go so my teeth aren’t great at all it’s all too much !

PMRpro profile image
PMRproAmbassador in reply toPol53

You shouldnt start a bisphosphonate until you have had a full dental check, including panoramic x-ray, and any dental work likely to be required completed. Do get that loose tooth seen too. Dentists don't bite!!!

And it infuriates me that they start patients on multiple medications all at the same time. There are absolutely essential drugs that are less likely to cause a problem that should be started soon after diagnosis but others should be introduced one a time afterwards so any adverse effects can be identified.

piglette profile image
piglette in reply toPol53

Some doctors really are second rate. The least they could do is give you some information about the drugs they are giving you. Hope it all goes well without AA!!

PMRpro profile image
PMRproAmbassador in reply topiglette

Back when the marketing was on for Fosamax, doctors were told by the reps it was a wonder drug, no side effects and could be used for years, banning the dreaded hip fracture that back then was the terror of the elderly, all too often resulting in total disability, need for a care home and in some cases ending in death. And what they learn at a certain stage of their career they never unlearn or question.

piglette profile image
piglette in reply toPMRpro

You are so right. The trouble is they don’t seem to bother to learn anything new after the age of about 30. They read something somewhere and that is their answer for the rest of their working lives it seems.

PMRpro profile image
PMRproAmbassador in reply topiglette

For too many I think that is the case, There are exceptions - thank goodness!! I suspect that is the source of the 2 years PMR rubbish too.

Bcol profile image
Bcol in reply topiglette

Think that applies to a lot of people/professions and not just doctors.

piglette profile image
piglette in reply toBcol

Sadly I think you may be right!

Sew_And_Sew profile image
Sew_And_Sew

I requested a bone dexa scan which i had on 15th December 2023 - I'm still waiting for the results!!

Spoke to my GP this week and he's contacting them as it's been such a long time you wait.

Previous requests had a response 'they're not back yet' and that was it. No offer to contact the x-ray department at the hospital.

This GP is brilliant - he was the one who dismissed me 18 months ago but he was a junior finishing his final year. He left.

Apparently he's now doing supply at my surgery and got so much more from him in that phone call, is making me feel more in control.

He's asked me in for bloods and a face to face at Surgery. Appointments made, just how it'll be him who sees me. 🙏🏼

Dreehal profile image
Dreehal

I had a dexa scan 2 months after starting Prednisolone.

About 6 months ago my gp (not the same gp who has been treating me since pmr) asked me to take something to protect my bones.

I asked for a repeat dexa scan which was given and there has been no changes in my bone density in the 4 years I have been on pred.

It makes sense to check before taking any unnecessary medication as I think sometimes gp’s thinking they are doing their best reach for the prescription pad too soon.

rosie_jones profile image
rosie_jones

Morning Yorkgirl2.

Yes, the same thing happened to me - I had a DEXA at the beginning of my treatment for PMR. This was suggested by the rheumatologist who started me on prednisolone when I saw her privately in January 2017 having been left untreated for 4 and a half months. The result was fine at that time.

Fast forward 3 years and, in early 2020, I asked for a repeat DEXA which was refused. My GP explained it was because of my age (I was 66 at the time). At my request, the GP appealed on the basis that I had been on steroid treatment for 3 years which necessitated a regular check on my bone density. An appointment was then offered which begs the question as to whether the staff who make the appointments are given information advising that there are certain situations where the age cut-off is inappropriate.

The DEXA appointment was given for April 2020 by which time it was lockdown and so I didn't get scanned until late August . My bone density had suffered and I was classed as osteopenic from the DEXA scan. I don't blame prednisolone entirely as I wasn't given a calcium supplement at the start of my treatment and I now know I consumed far less calcium through food than I should have done. Anyway, I started alendronic acid and will have been taking it for four years in October. And I'm still on prednisolone - got to 2.5mg in February and flared! Oh well.

I suppose the moral of the story is that we shouldn't just accept refusals like that of your DEXA refusal. Sometimes we have to argue, fight, enlist the help of others (the PALS department locally to me are really excellent) and maybe even go through the political system to achieve change. Hard when you've got PMR fatigue but... So go for it and good luck Yorkgirl2.

Googleeyes1 profile image
Googleeyes1

After reading your comments would like to add, same age as you and female i have dexa scan every 2 years. had 12 vertebral fractures 3 years ago . Still not healed . can't stand straight . lot of pain. had to take steroids because had temporal arteritis and if high dose of steroids not taken immediately can lose sight. one of my worse nightmares. always said as long as i can keep my sight ill cope with everything else. had to use steroids for TWO YEARS then taper. had another bout of it few years later. point of issue. prednisone is a deal with the devil. no matter what you have to take it for , there's a payback. its not free. you sign the devil's contract and he comes knocking when he wants payment. no argument. he took my bones . insist on a dexa scan! you might feel fit and healthy but would you go skiing if you knew you had brittle bones? my back fractured through bending over and leaning.nothing more . its your job to look for what your body needs and to insist you get it. you don't get second chances. just read somewhere, In the 70s was in my 20s now I'm in my 70s in the 20s. look after your b. body and it will look after you. you might get new bits, but you only get one body,

MamaMia12 profile image
MamaMia12

Hi, I was diagnosed with PMR in October 23. I was put on steroids , along with adcal d3 but I asked my GP to refer me for a Dexa scan last month.

I used Vista Health who charge £125 and arranged it within a week . The report was done within 3 days showing I have osteoporosis in my lumbar spine and femurs. I was shocked as always been extremely fit and healthy. My GP just had to do a simple referral stating I was on steroids and needed to check bone density. I’m 61 so maybe being post menopausal (I wasn’t on HRT but have now started it ) along with steroids has caused the osteoporosis. Hope this helps

moconnolly profile image
moconnolly

My NHS rheumatologist requested DEXA Scan and it was refused because I'm over 75 and had broken my wrist in the past due to a fall in the street, so it was assumed I had been treated for my bones. However, the fall was at the time of the Covid peak and apart from the wrist being plastered, it was never followed up on; even physio was just one session. They also cited the fact that I had been on AA as I had been on steroids, so 'not necessary'. In fact I had stopped AA because worried about side effects should I need tooth extractions in the future. I still take adcal and vit D3, As it happens I have recently been prescribed HRT patches for 'post-menopausal flushes and night sweats; therefore Rheumatologist says that should compensate in part for the AA. I am informed that one can requesst DEXA scan from GP so perhaps you should follow this up again. Good luck.

taichikung profile image
taichikung

Have a private dexa scan if you are able to, it will take a lot of stress away from the experience you are encountering.

Tiggy70 profile image
Tiggy70

Like you I have been refused a DEXA scan on the NHS even though the AA was playing havoc with my gut. As mentioned in a previous reply to you I have been paying privately through Vistahealth for scans. One a year for the last three years called REMS. I think my last one was about £160. If you can go privately I would recommend that.

Dinahmite profile image
Dinahmite

I was diagnosed at the end of October 2023. Im 75 and my request was denied too so I paid for a Dexa scan at the Nuffield. I think it was £165 or something like that. Anyway I discovered I had Osteoporosis so began taking the AA. Tummy upsets too but they do seem to be settling.

PMRpro profile image
PMRproAmbassador in reply toDinahmite

There are alternatives to AA if it upsets your stomach. My daughter who works in endoscopy insists it is fine if you take it properly - I'd beg to differ!!!

Dinahmite profile image
Dinahmite in reply toPMRpro

Thank you.

Gimme profile image
Gimme in reply toPMRpro

I'm inclined to agree with you. I'm damn sure I took AA correctly and after losing a day a week for 3 weeks, sitting on the toilet and being afraid to move, I decided enough was enough. When I did get off the toilet, I spent the rest of the time lying in bed feeling too ill to move. Awful stuff.

autumnlass profile image
autumnlass in reply toDinahmite

I used to take AA but had joint pains following it, so GP put me on Risendronate 35mg weekly. No problems with it 2 years on.

Washingup profile image
Washingup

I have been on pred since May 2022. Since then I have managed to taper down to 2mg. There doesn't seem to be any history of osteoporosis in our family including my mother. When I was initially prescribed pred 30mg because my pmr was so severe, there was no mention of me being prescribed AA but I was put on Adcal. It was over a year before my GP decided I ought to take AA. Since then I have suffered multiple fractures in my spine and pelvis and in constant pain after being prescribed all the painkillers under the sun that don't give me relief, I wouldn't wish this on anyone! It was only then my consultant decided to do a dexa scan to find I have severe osteoporosis. I am now on a new drug call Evenity to strengthen my bones. So please get a dexa scan before your bones get in my state!

Exflex profile image
Exflex

Just replying on the age thing, I had a DEXA scan at age 71. Results took 6 months, the report saying in normal range but to have a repeat DEXA in 5 years.

PMRpro profile image
PMRproAmbassador

I was very lucky in that I got my first on the NHS within a few weeks of starting pred so know it was normal back then and calcium and vit D was all I needed, I could refuse the automatic AA. Since then I have been living in northern Italy where I could request a dexascan whenever I liked and it cost me a co-pay of 37 euros done by a private clinic! I thought it was subsidised by the healthcare system and I needed a referral but no, it would be the same price if I rang them directly and asked. I got them at intervals, very little change over 15 years. Currently there are 4 dexascanners, one state funded, the others are private but sell capacity to the equivalent of the NHS. And my rheumy said in a talk in the village last week that there are plans for a more equitable distribution over the region. There is a lot to keep me here.

JGBH profile image
JGBH in reply toPMRpro

Indeed. Health is so precious so if you have a better health service (as you do in Italy) then make the most of it. The problem is being far from your family, I should think.

PMRpro profile image
PMRproAmbassador in reply toJGBH

It is and I know I shall HAVE to come back at some point as I am totally alone here, My daughter has just bought a house with a bit at the side that will be ideal to turn into a granny flat - already has a toilet and study which will be turned into wet room and bedroom and I shall build a wintergarden outside it to make a living area. It will be barrier-free and future-proofed - this daughter is a nurse so I shall have on-site care when I need it, The flat she lives in (mine) should be sold today and the new main bathroom in her house will be done by the end of the month, should have been started today but will be late, and then they can move and I will have plenty of money to do my bit. Just working out how much time I can spend there without too many complications in terms of retaining my Italian rights. Sod the B-word ...

JGBH profile image
JGBH in reply toPMRpro

Like you I say sod the B-word… being French. It has achieved nothing but division and hardships… interfering with scientific research in all fields of industry and education. But there we are…

I understand your concerns about having to give up on a great medical service and coming back to the UK where the NHS has been crumbling for years and getting worse. Being elderly and having many health issues I do worry a great deal.

However, coming back to the UK to live with your daughter (though independently) sounds like a great plan plus the benefit of having your own private nurse.

I hope it will work well for you.

Macas profile image
Macas

I have. Just had a dexa scan as requested by my GP as it’s 7 years since last scan. The waiting time is 26 weeks!! No results yet. I am 84 and previous scans have been very good. Will let you know the results which I should receive this week. I do not take AA just vitamin D.

Sally_Bones43 profile image
Sally_Bones43

I am in the same boat more or less. No symtoms of osteoporosis but GP says I should be on Alendronic acid. I said I wanted a scan but she says it will have to go through osteo and they may refuse. Only risk factors are age 80+, Pred and too much alcohol (2 glasses of wine in the evenings!). I will refuse unless there’s evidence for a need. None of my female forebears had osteoporosis, and when I have fallen from time to time I bounce!

Yorkgirl2 profile image
Yorkgirl2 in reply toSally_Bones43

Thanks for you (and everyone else) for your replies. Seriously considering asking for a private Dexa scan. If results show a need I would certainly take further medication but don’t want to take unnecessary drugs either ! I’ll sort out an appointment with my GP and take it from there.

Purplegloss profile image
Purplegloss in reply toYorkgirl2

The Nuffield Hospitals do not require a referral from your GP you can just phone the department and arrange it as I did earlier this year. Report does go back to your GP of course and takes a couple of weeks. Cost was £125.

Oh-my profile image
Oh-my in reply toPurplegloss

I had to provide a referral note from my GP for the Nuffield hospital. GP was happy to provide. It cost £165 and results went directly to my GP. Took a bit of chasing to get them - even though I was the one paying!

Purplegloss profile image
Purplegloss in reply toOh-my

I have had two done now three years apart, and neither needed a referral from my GP, so maybe your Nuffield is different to mine. Only £125 as I said previously, and that was a couple of months ago. Report back after a couple of weeks, which was excellent.

Oh-my profile image
Oh-my in reply toPurplegloss

Mine was January this year. I was a bit put out that they needed a referral given I was paying but they asked for one. Maybe if I couldn’t get one they would still have done it - for the money. Who knows? I could literally choose any time and day I wanted.

autumnlass profile image
autumnlass in reply toPurplegloss

I do it too through the Nuffield Hospital. Very easy!

PMRpro profile image
PMRproAmbassador in reply toSally_Bones43

They MAY refuse - but they may not. Nothing ventured and all that.

But do look at the post I put up a few minutes ago and you will see why they assume a lot - age is a BIG factor.

Yorkgirl2 profile image
Yorkgirl2 in reply toPMRpro

Yes, thank you. It’s sad that once you get to “a certain age” you don’t seem to be treated as individuals. Oh well, that’s life I suppose. Keep smiling and carry on. PMR causes enough stress without the NHS adding too it. I’m now going to enjoy my garden in the sunshine☀️

OonaSt profile image
OonaSt

My rheumatologist put me on 40 mg for PMR and told me to have reclast without first getting DEXA. I turned it down and found another rheumatologist ASAP. That was 3 years ago. I also was going through and still am, many dental procedures which can cause catastrophic issues mixed with reclast and other types of osteoporosis drugs. I’m glad I got my Dexa before taking anything for I do not have osteoporosis (just osteopenia) which I’m following up on with an endocrinologist and doing what I can to increase bone strength. I hope you’re able to sort this out with your doctor and get your Dexa so you can make your decision.

Sally_Bones43 profile image
Sally_Bones43 in reply toOonaSt

Thanksall round. If they refuse me a Dexa I will try private. .

Body_bonkers profile image
Body_bonkers

Sounds like a postcode lottery scenario. First thing my GP did was book a scan (I was 48) but still waiting year on. The rheumatologist says my risk is low and no family history either

PMRpro profile image
PMRproAmbassador in reply toBody_bonkers

How do they assess risk though? Sounds like crystal balls to me ...

Body_bonkers profile image
Body_bonkers in reply toPMRpro

My thoughts exactly !

PMRnewbie2017 profile image
PMRnewbie2017

Wow, your post has prompted many replies. Apologies for not reading every one. Could you afford to have a scan privately? I live in East Midlands and travel to London. The centre I use do not require a GP Referral. Provide you with results and forward them to your GP. The cost was £90 two years ago. I'm guessing you live in York where there's probably reasonable services???I repeat my DEXA every 3 years out of choice.

TheMoaningViolet profile image
TheMoaningViolet

Hi, while it is useful to have a baseline DEXA, they are recommending AA prophylactically, so in their mind, however good your DEXA may be it does not mean you won’t need the bisphosphonates . There are some studies showing that the loss of bone is the most pronounced in the first 6 months of taking the steroids and once you are down to 5 mg, you could simply stop. Some people choose not to take them no matter what and suffer no consequences, others end up with serious osteoporosis. There are many things you could do with diet, supplements and exercise, so you could do your best and take your chances. Only you can decide.

Private DEXAs are not punishingly expensive and in some places you can self-refer. If your bones are already in bad shape, you may want to see someone about it before deciding which medication to take (taking AA orally is not the only option). It’s a separate problem that requires careful consideration and a decision on the right meds for you.

I hope you can get the answers you need and make a decision you are comfortable with.

AnnaColuthon profile image
AnnaColuthon

I asked for a DEXA scan as I don't want to take Alendronic acid just in case. Doctor wasn't keen so I asked for a referral to have it done privately for £165. Didn't seem too bad to me but of course not everyone could afford it. Waiting for result.

51Highland profile image
51Highland

Bottom line up front is - in my opinion - get the scan done. It could be enormously beneficial.

I was on 15mg Pred and tapered down to nothing but it took time (4 yrs). I was on AA throughout and seemed to have been left on it which I’m ok with.

Last year I broke my collar bone and as a result was invited to have a Dexa scan in April 23. I got the results in March this year but that’s another story. The scan showed I had osteopenia. It also showed a fracture of T7 I didn’t know I had so I’m grateful they told me to have it.

This year my hip told me it needed replacing. The Orthopaedic consultant told me osteoporosis comes with age (I’m 71) and was delighted I was on AA (‘why wouldn’t you?’).

Meanwhile the Dexa results sent me to the GP who has put me on Adcal (VitD/Calcium tablets). I’m so pleased your lovely mum ‘bounced’. Will you?

Best of luck.

PMRpro profile image
PMRproAmbassador in reply to51Highland

Were you not also taking calcium and vit D while you were on AA? It is actually MORE required when on AA to prevent low blood calcium levels as the calcium is sequestered to the bones and if there isn't enough in your diet the calcium level can fall - and that isn't good for muscles, in particular your heart.

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