Good Morning, am speaking to GP next week to ask him to refer me for a DEXA scan ...diagnosed with PMR Aug 2019 ...fairly bumpy journey but have been on 7.5mg now for past 3 weeks...so far so good but having to really pace myself ...reducing 0.5mg per month... have taken AA since being diagnosed...never been offered a DEXA scan ...any advice on how I can put my case forward to Doc to refer me for scan?......was sent for one several years ago after X Ray on very sprained ankle, told Osteopenia then, so just feel need to see where I am at! I do have Calcium and Vit D as prescribed and have a healthy veggie diet...any advice would be welcome! Many thanks for all the info this site gives, I read it every day!
Trying to get a DEXA Scan: Good Morning, am... - PMRGCAuk
Trying to get a DEXA Scan
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Devon21
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I would hope you won’t have to put your case forward. My doctor suggested it and I have to ask for a referral every 2 years now that my bone density is normal
Thank you, was hoping he might have suggested sooner...fingers crossed!!
Hi Devon21.If you already had osteopoenia diagnosed before PMR diagnosis, I would have thought it would now be quite important to have a DEXA scan for a baseline assessment of your current bone health. Steroids are well known for causing bone health deterioration and you really need to know what state they're in and what further deterioration (or improvement) is happening. It could also determine whether you need biphosphonates or calcium supplements and what dose. I think it's true to say that most of us have dexa scans so I'd definitely push for one.
Hi, yes me too, am surprised I haven't been offered one, but really feel need to know where I'm at...would love to stop taking AA too! Thanks for your reply 😊
I’m in the same boat with osteopenia- my rheumatologist set up an appointment for me for a Dexa scan. I want to know what’s needed now to look after my bones after four years on biphosphonates. You can get them privately I believe but hopefully your GP will be sympathetic.
I'm quite surprised that you've been put on biphosphonates for osteopoenia. I personally would have wanted to wait to see how well that could be maintained or improved through diet, exercise and calcium/vit.d supplements. Biphosphonates are not a particularly nice medication and I would only be on them if deterioration had been shown over time.
I may have misunderstood though and maybe you started with osteoporosis and biphosphonates have now improved your bone density.
See FAQ'S for lots of really helpful information on this subject
Hi thanks for your reply, was put on them when diagnosed with PMR...Was hoping along my journey would be offered DEXA scan, but then with Covid and other stuff, didnt think to ask for one, but do feel need one...appointment now made to see doc 😊
I was given AA at the start. Stopped taking after 10 months. After Dexa Scan results it wasn’t really necessary. Just GP being over zealous.
I think that's a good decision. .. I would always advocate not taking any medication without some evidence that it's required first. There's no question that steroids can cause harm to the bones but many people do actually manage to maintain their bone health quite adequately without biphosphonates & whilst taking steroids. Without an up to date dexa scan it's impossible for anyone to know their current bone health and if we don't actually need biphosphonates then why would we take them. You wouldn't just take a paracetamol because you might get a headache!I'm not saying they might not be required in the future, but they are quite toxic drugs that I wouldn't be on if it wasn't absolutely necessary.
Exactly what you have said in your post - you need the information to make informed choices. I’m having one tomorrow - a bit of a day out up to Oswestry - but well worth it!
Let us know how you get on 🍀
If you don't have any luck getting a Dexa scan with your GP, if you are over 60, the Nuffield Hospitals will do one privately, I think it was about £120 or £150 can't remember exactly when I had mine done a couple of months ago, and no waiting either.
Meant to reply to Devon21
Many thanks, will try NHS first, but good to have an idea of costs!
Morning Devon, nothing really to add, but when my doctor suggested AA I asked for a DEXA first and would then discuss afterwards. She happily agreed and no problems getting the scan which I think, without checking, was in January. Results were excellent so not on AA at the moment.
Hi Requested dexa scan with GP last month. Pmr 14 months and cannot tolerate AA.His reply oh no we just presume you have osteoporosis as you take steroids!!Private one booked £150.
I had the same response from my rheumatologist who is pushing me to have infusions even though I had a reaction to AA.He said after six years of steroids there is no point. I had one done privately and it was normal. He still says I need the medication.
I have been on pred for 12+ years, no bisphosphonates and my bone density has barely changed in that time, still at a level that doesn't require any more management that calcium and vit D.
Two months into taking Pred my GP refused to refer me for a Dexascan scan, so I went privately. He seemed to think taking AA was all that was needed. Didn’t know about the importance of a scan until I found this forum.
I had a Dexascan privately before I took prednisolone, and another 5 months later prescribed by my rheumatologist. I had osteopenia, mild to moderate, before taking it and osteoporosis in the lumber region after. Apparently the worst damage is done within the first few weeks of taking steroids because you're usually on a high dose. It's less of a problem when you taper to 5mg and below. I would definitely ask your GP for a scan.
Many thanks for your reply...I also had a lot of spinal surgery several years ago, so be good to know my lumbar region isn't suffering too much! Many thanks 😊
I was diagnosed with PMR in July this year and have already had a DEXAscan after suggesting it to my GP. He was only to happy to refer me to the local NHS hospital for the scan. I don’t know why some GPs are so unwilling to refer, unless it all impacts on their budget. My results were encouraging. My GP suggested I take over-the-counter Vit D 400IU and eat cheese and dairy products for the calcium( I told her I was a cheese addict).
That's encouraging to hear...fingers crossed mine will be happy to refer me too! Many thanks, always good to hear others experiences 😊
in reply to HalleysComet
Hi, My GP told me to eat cheese too but plenty of articles out there to say that's not the answer! Bone chemistry is massively complicated and GPs haven't a clue it would seem.
Add Vitamin K2 (not K1) to your supplements. It's the vitamin which sends calcium to the bones. Vitamin D can't do that.
I live in Wales and the waiting list was over a year. Went private (in Stockport England) paid £119. Two weeks. LBM 1953.
I'm in the same boat as you. I was diagnosed with PMR (and started on Prednisolone) early September and was also prescribed AA by my GP which I didn't take after reading all I could on this forum. I requested a Dexa scan but was made to understand that for people over 65 (I'm 69) the NHS guidelines are to not have a scan but to prescribe AA on the assumption that at that age a person must have osteoporosis.Your post has reminded me to try and get one privately.
Thanks for your reply...I'm 59 so fingers crossed they might agree to one! Hope you get one sorted too!
Hello Devon 21.
When my doc put me on to Pred staring at 20, one of the tests she needed then was DEXA, in order that there was an initial scan to compare with in the future. Sadly that is too late for you now. I do agree with the fees for the test in the private hospitals. Here is the New Forest area. Spire and Nuffield are £150, and done within a day or two.
Good luck and keep safe.
Just ask. I did for the first one. I am now having a 2nd in November. I asked again . My GP desperate for me to take Alendronic Acid. But I won’t if it not necessary. My first scan was good so now I have a baseline .
Oh dear I had no idea about Dexa scans till I go on this forum, so was put straight on AA in December along with 40 mgs of pred . no questions asked or no discussions. having eventually talked to the Rhumat. recently I asked shouldn't I have had one and he said that is a point, so may or may not get one in future, along with my MRI scan and my prolapse consultation and my Musculaskeletol appointment to really depress me went to the local walk in centre this morning for my "third vaccination" and they had such a response they have changed it to appointments only and had 700 booked in. How, it wasn't changed on the internet Grab a Jab site. Plus my daughter had tried ringing the main site to book and put in my NHS number and it says I am not eligeable, for gods sake I am 74 and they are telling the over 50 to book, As to paying just how do Idecide which is the most important. really depressed and I am never depressed , apart from early steroids when i rang the children one dark wet night to say I was leaving their father. Not sure how, I could hardly get down stairs. Let alone head out into the night, I'm sure I will laugh about all this one day.
Oh dear 67Blue, do I empathise with this! I seem to be going from one frustrating appointment to another at present! 😟
However, as far as I’m aware, I haven’t yet threatened to leave my husband😂 In fact I don’t know what I’d do without him at the moment….
All the best, it’s hard isn’t it!
Nextoneplease x
Thanks for the reply, sadly the time of covid hasn't been a happy time for us, both too used to going out a lot and doing our thing and I imagine being at home with a man who refuses to wear his state of the art hearing aids, has tele on 99 volume and yells WHAT for all the neighbours to hear every time I speak to him went towards stress which helped bring the PMR and GCA on. He also thinks because I look ok there is nothing wrong with me, Foolishly I dragged myself around at the start so now it is hard to convince him I am not ok. But I guess at 74 and 84 it is a bit late to move out, I just hope he never needs my help or he may not get it!!!! I have seen him through two new knees and various other ailments, But hey ho that is what wives are for apparently.So I am envious of the people who have these nice helpful husbands.
Self pity over. Thanks a lot
Hi 67Blue
I’m sorry to hear you’ve been having such a difficult time. I think sometimes we underestimate the difficulties that retirement or ill health can bring, and you’ve certainly had your share of problems!!
I am fortunate, I know, to be married to a lovely man, but that doesn’t mean we never snap at each other or disagree…..over all kinds of things. And we’ve had major disagreements in the past over life choices like moving house and so on.
And you’re right, before Covid we both had our own lives, activities and friends, which gave us a break and also something to talk about when we sat down for dinner etc…..As things have eased a little, pandemic wise, hubby has got back to some of his activities, but my health has meant I haven’t to the same extent…..so I do feel quite sad at times, but I know it’s not his fault.
Anyway I guess we all have our problems…
Are you in a position to get out of the house to have a break, and do at least some of the things you did before Covid? Maybe even a couple of afternoons a week would take the pressure off?
I do hope things improve for you 😊
Sending you hugs xx
Thank you, having read your posts I realise i am the lucky one when it comes to health problems. The isolation is my choice. As the rhumat. said stay away from everyone, even when you have the first two vaccinations you will have at the most half of what others have. So apart from having trips to garden centres (sometimes meeting a friend there for just a coffee and always outside.) where they still mostly wear masks. I have friends in several groups I belong to and they all went back in September apart from people like me who are nervous. They will welcome me back when I decide the time is right. Not sure when that will be. I did miss the dinner one of the groups had in a pub last week, but at least a friend rang up next day and said she really missed me being there.However my area, Ipswich has just received the award for the worst covid area in England for a couple of weeks ago and calling for help from the government to help contain it. So not good ahead as it means less catch up for the hospitals for us people awaiting help and the Suffolk hospitals have stopped hospital visiting for now.
Have just had my 3rd jab, gave up on Ipswich, why go into town if you don't need to, I haven't been other than a couple of necessary visits and the out of town one was closed due to road works. What a disaster, so went up to Bury St Edmunds. Driven by a very glum husband.
I have a lovely garden, after all last summer work then pottering this summer, so it has been a life saver. But still have projects if I feel better next year.
Hugs to you too.
xxx
Thank you 67Blue for the hugs 😊
I don’t believe that isolation is really your choice, and nor is it mine. We have autoimmune conditions at the time of a pandemic, and this makes it reasonable to be cautious. Like you, I think, I find this incredibly hard. I’ve been sociable all my life, lived for and alongside others, and now I find that I am caught up in a tide of ill health, just barely managing to keep my head above water in the slipstream of busier lives going on around me. Part of this is age and retirement, of course, but most of it directly relates to health.
I really identify with your need to take care, but for me I think a time will come when the balance will shift, and I’ll decide it’s more important to travel, see people, get out and about, than it is to stay safe. I have a feeling that time may not be far away!
Take care of yourself, and again, hugs to you xx
"nice helpful husbands" - what's one of those?????
You've heard of at least one.😂
True ...
I just had my Dexa scan today. Dr referred me to 'check health of bones' after being in Pred for 6 months - so they have idea of what my density is now as guide for further down the line. Apparently all OK though hip is showing only just OK! (though have to wait for official results). But certainly you should have one and definitely shouldn't have to pay!So definitely push for one - good luck!! X
Hi there. I was diagnosed in March last year. My GP sent me to a rheumatologist who recommended to the GP that I have DEXA scan. The appointment came though 5 months later. It’s really important you have a DEXA as you were diagnosed with osteopenia. You’re right, you do need to keep an eye on things.
I was diagnosed with PMR in August 2020. I have tried unsuccessfully on a number of occasions to get a DEXA scan. Two consultants have refused saying I can’t have one until I come off the steroids. I have asked to pay for a private scan but they refuse to refer me. I’m continuing to take a bio phosphonate as per the consultants instructions but have bad side effects from them. I’ve tried AA, Resindronate and now have to try Ibandronate (taken monthly) in a couple of weeks. It seems in the UK that it’s a postcode lottery as to whether you can get a scan. Do you have to have a referral to get a scan at a Nuffield Hospital? If you can get a scan does the hospital explain the results of your test?I wish you luck in getting a test.
Hi Tiggy70
As far as I know, you don’t need a referral to book a scan at a private hospital 😊 However, I don’t know who would explain the results (the hospital may do, I just don’t know).
My only experience of doing similar was booking a heart scan some years ago. The service was brilliant and very reassuring, the only problem was getting the scan results on to my NHS records 🤦♀️ I hope the system is better now, with all the use that’s being made of the private sector x
Thanks for your reply. I think I’ll just do some research on Nuffield hospitals in my location and give them a call. I’ve also had difficulties in the past when switching between the NHS and private healthcare.
I suspect this is all to do with different areas budgeting for their own perceived priorities. I had no trouble at all getting an NHS scan within 4 weeks of asking. My GP is managing my PMR- we agreed there is no need for a rheumatologist consultation.
That’s good. I think I’ve just been unlucky with the area where I live. Where are you located?
Keighley. Our local A&E is Airedale.
To all concerned about what is happening to your bones. Supplementation with magnesium and Vitamin K is just as important as calcium citrate and D3. New bone cannot be formed without them. Dr. Ken Barry's videos about bone health on YouTube best explain how to protect your bones and the effects of these drugs. It is so important to reevaluate when you have reached a safe low dose of prednisone.
Thank you AdoptMeow 😊
I’ve finally reached this conclusion after eight years of being prescribed only calcium and D3 by my doctor….will take a look at the YouTube videos you mention x
Should be Dr. Ken Berry
I am surprised they prescribed AA before even having a Dexascan. I would certainly push for one as you’ve been on pred since 2019.
I was diagnosed May 2018 and had a Dexascan within 2 months so they had a baseline to compare to moving forward. I had another bone scan in the fall of 2019 which showed some changes but it was done with a new/different type of equipment, so difficult to compare “apples to apples”.
When I asked about another scan last fall I was told I need to wait until 2023! Surprising given that I am constantly warned by medical professionals of the possibility of bone deterioration being on pred long-term (3.5 years now). The pharmacist at the rheumatology clinic where I currently attend said it was a funding issue?!? If I have to wait 3 years between scans, that’s plenty of time to experience deterioration. To combat this I try to engage in weight bearing exercise, like walking, regularly. No need to wear a weighted vest, cuffs, etc as I am overweight so my body serves me well in this regard lol.
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