I have been on 40mg pred for 3 weeks for positive GCA.I have agreed to take weekly alendronic acid as advised by my rheumatologist, and took my first dose yesterday. I asked him about having a dexa scan. He says he will arrange a dexa scan when/if I am off steroids, which he says may be in 1 - 1.5 years time. If it shows good bone density I can stop the bisphosphonate.
I am happy with this but would like to have a private dexa scan now so I can know the baseline.
Does anyone know if a GP/rheumy referral is required in the UK for a private scan and a good place to have one in Salisbury/Southampton or South of England area?
Thanks!
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kalgoorlie
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If you are not using insurance and just want a Dexascan you should be able to just book an appointment. I quite often do for various things. I do let my medical centre know the results, so they can put it on my medical record.
That is interesting, on their website they actually advertise saying ‘no referral necessary’! Were you with BUPA or another private health insurance company where you always need a referral??
No insurance company involved. Plus they sent me the results with no explanation of the scan. There was no way in this world would I understand what the tests meant, therefore I had to get the GP to explain to me what the results meant, allbeit I had to make an appointment with the GP which took 3 weeks to get!!!!
That is worth knowing about Vista as I have started using private health organisations. So far I have never been asked for a referral from my GP. You should write to advertising standards about Vista as they are lying about no referral necessary.
A GP can refer you for various scans. I have just enquired about an MRI for my husband at the local Spire hospital and my GP will need to refer him, which won't be a problem. Just waiting for other results to come through first. Cost is very reasonable...£440. Could be worth checking with a private hospital direct and then asking your GP. Hope you get it sorted soon.
I think you should be asking your doctor to refer you for a dexascan on the NHS. Most doctors will do this and you should also be taking d3/calcium to protect your bones along with k2 to send it in the right direction!
Thanks Koalajane,My rheumatologist said it could take 6 weeks to get a dexa scan appt on nhs which is why he urged me to take the alendronic acid as he says the majority of bone loss in steroid induced osteoporosis occurs within the first 3 months.
Apparently my calcium level is high so he has recommended stopping taking extra for one week then taking half a dose. Blood tests will monitor this aspect anyway.
I was told by the doctor that there was no rush for the DEXA because nothing much happens in the first 3 months. Makes you wonder where they get it from.
Unfortunately the problems crop up later when dentists refuse to take a tooth out because you have taken AA in the past, It happens. So delaying it to make sure all potential dental work has been identified and done first makes sense - and you may not need it anyway. They wanted me to take AA 15 years ago, I didn't need it and haven't until now.
Gosh there’s no end to things to worry about is there? I’m glad I saw this though, I’ll definitely check with my GP re the scan. Have no dental work in prospect but you never know what migh crop up…
I have regular check ups, not due till April though…I wonder what the waiting list is for NHS Dexa scan in Herts. I’ll have a look, see if I can find some info.
my GP put me on Alendronic acid and a couple of weeks later rang to tell me to stop taking it until I had been to the dentist and completed any treatment. I stopped taking it then and didn’t take any more as I had a bone density scan which said I didn’t need it as I had very mild osteopenia. The next scan showed my bone density to be normal.
The Alendronic Acid gave me awful heartburn so I was glad to stop taking it.
I said I wasn’t going to consider taking AA until I had had a DEXA scan. They weren’t happy because it was the gold standard to give people AA with Pred regardless. Getting a baseline showed that due to other factors I had lost about 10% before Pred over the years since I had one for other reasons. Having a repeat after Pred showed that I lost a further 3-3.5% but still osteopaenic . Had I not had this it would have looked like the Pred had done all the damage. The baseline score also meant that AA was not a must have so I didn’t.
You should be able to book a Dexa without a referral. Not sure why they are saying that. Or you could look at REMS scans with a company called OsteoScan. I have also had one of those and was impressed with the person doing it. He is a spinal surgeon and so hopefully knows his stuff.
Call them and find out what they say - your GP can do a referral if one is required.
I'm not sure what world your rheumy is in but the likelihood of being off pred in that time scale is pretty low! And don't take more AA until you have been to a dentist, had a check including an x-ray to be sure that there is nothing invasive (extractions) likely to be needed in the nearish future. Have a hygienist appointment and make sure you have excellent oral hygiene while on it. Otherwise you may find there isn't a dentist who will touch you if you have a problem.
I have been on pred for over 15 years - and only just been advised to have bisphosphonate infusion as I have a spinal compression fracture. My bone density has never merited taking them before
That is good - but it can become almost impossible to find a dentist who will touch a patient on bisphosphonates, been a lot of discussion about it recently. It is lack of correct information but getting a dentist is hard enough in the UK anyway!!
My dentist has said that they wouldn't treat me anyway, because of my ailments and medications, but I still pay for a check up. I'm guessing I'd be referred to the hospital dental department in an emergency situation.
No other sign - no pain at all suggesting a fracture. Just seen by the radiologist when reporting the x-ray and when Christian discussed it with him at their meeting, it was decided it COULD be. And he feels prevention is better than cure. I've escaped so far, over 15 years.
It just happens that I was looking into the same question. I found that Spire will do them without a referral and it costs £125.
However, I got the hospital letter yesterday for the appointment for my scan on the NHS. I saw the doc 2 weeks ago and the appointment is for 2 weeks time. I'm quite happy with that.
The only thing I regret is not having it done as a baseline a year ago, when I first went on pred. The problems with no continuity of care and everyone I saw contradicted the last! I was told to come off pred as I didn't have PMR and I tapered right down, only for my PMR symptoms to re-emerge (surprise surprise). Saw the GP who originally said I had PMR, he wants me on Donuzemab as he thinks it more likely that I will be on pred for the long haul. I can't say that I am too happy to have a depot of anything, but I can't tolerate the tablets. I said that I wouldn't even consider Bisphosphonates without a DEXA scan first to see if I needed it, because of the dental issue, and hey presto, here I am.
You have a Spire hospital in Southampton, but personally, I would try your GP first and see if you can get it on the NHS; your bones aren't going to change much in a month or so, if the wait in your area is similar to mine (Hertfordshire).
Salisbury hospital has a Dexa Scan room. I see it when I visit the Podiatrist next door…it’s in their dept space. I’ve never had a dexa scan, so I’ve no idea what the service is like, but it’s in a very quiet part of the hospital, away from the main area, in a separate building.
I refused AA as I knew from a scan five years previous that I had extremely good bones. Doctor sent me for a scan to confirm this and agreed I was right. AA has side effects that aren’t good for you if not needed
That’s true but at that first scan I was told I had the bones of a 21 year old! And I would never have to worry about them After four years of steroids there was no change in my bone density
I agree with you a lot can change in 5 years. I wasn’t so lucky. Big decrease in bone density for me so I must have been doing something wrong with the amounts of calcium and vit D. Or maybe it is one of those things which is why we are encouraged to start AA without a baseline test even. I read a post somewhere that DEXA scan machines can give different results ( or it could be the operator). How important is it to go back to the same machine for retesting?
I think too much faith is put in the readings to be honest. They aren't absolute results but an assessment of status and even the angle at which the beam passes through the hip can alter the reading - is that even dependent on operator? I'm not sure anyone can reliably position the patient in exactly same position every time. And does anyone ask if the current machine is the same one as last time? I don't think any result should ever be taken in comparison with another. Mine this time showed IMPROVED hip compared with the very first one as far as I can remember! 15 years older ...
I think there are a lot of factors in the patient's history that have an effect - history of HRT for example. lifetime lifestyle, and above all, genetics.
But I also feel a baseline is essential - maybe a patient is ALREADY osteoporitic but later it will be assumed "it was the pred what did it" - when it wasn't.
That’s interesting. I have had several DEXA scans done over the recent years as part of the Bristol university longitudinal study. No doubt following bone density drop pre and post menopausal years. They always showed an above average bone density so I was curious whether my recent drop could be attributed to a change in the machine (university to hospital) or operator or a full year of Pred. The university scan literally tied us in place in a frame so we couldn’t move each time.
It was really annoying. I had one done on the university machine last October and was counting on it to get an indication of how 6 months of Pred might be affecting me. For the first time they wouldn’t give me my results from their research. Photographs and colour printouts. Most likely because there’s been a change of director (Prof Golding has retired) or maybe because we are of an age where too many of us are rushing to our GP with concerns.
hi Kalgoorlie. I would have thought he’d get you for a dexa scan now, right at the start of your Pred, so you both know where you’re at now. (That’s what my surgery did anyway), with a further scan 2/3 years down the line.
I know things change from area to area. Good luck,
I had a self refer private Dexa scan at the Nuffield. £165 Worth every penny as I found out I already have osteoporosis and am therefore more focused around the whole issue.
You are very lucky to want somewhere near Southampton cause otherwise the South West is a private DEXA desert. I went to Nuffield Wessex. They were brilliant. The operator gave me a verbal description of what she saw but the full report had to be sent to GP - I suppose they will need to explain anything complicated. You get a report as well, and I think I asked for the scan to be emailed, but not sure about that. Don't hesitate.
Thanks for this. Did you get a copy of the full report yourself? Seeing as though you booked and paid for this yourself. I have no problem with my GP/ rheumatologist having it but having booked this privately for myself I'd want the full report and explanation from the hospital myself.
For sure. I definitely got the full report. They send that on afterwards because someone else has to compile it. I don't know whether I asked specifically for it to be sent to me or if it was automatic. They have a helpline number and a webpage and I found them very helpful.
I didn't think they would even comment at the time (like the NHS won't) but the woman was very happy to go through the broad headlines of what she saw, eg I was about average for my age. I didn't bother looking through the report in detail and cross checking it with online info, or going to GP for an explanation cause I was satisfied with what she said. If I did want to have results explained I'd come to the forum first. X
I would try asking your GP first. I started on 60 for GCA and PMR. My GP arranged the Dexa for me after about 2 months and last year I had a second one 5 years on I am pleased to say it was "normal". I am on the natural path as much as possible and took Boron (in larger doses than is normal in the UK. although normal in the US) also Vit D and lots of Dairy for the calcium. My sister on a similar path to me had a Dexa scan recently and she has osteopenia. She had taken everything her doctor said including AA. Good luck.
My last dexa scan was 6 years ago. My doctor though it time I had another scan as I have been taking Pred for 14 years. I rang the local hospital to check why I hadn’t received an appointment believe or not it’s a 26 week waiting list!!!
For information: Oryon imaging in Wimpole Street London W1 will do Dexa scans from £95 with a report to take home with you, without a GP referral. They also do lots of other imaging MRI, CT and X-Ray but you might need a referral letter for those.
I've used them twice for Dexa and found them very professional. Also because I go to the same centre, the results are comparable as the machine and staff are the same.
I have got a referral from my rheumatologist for a private DEXA scan at QA hospital in Portsmouth. I asked in early February and my appointment is early April.
Hi, When first diagnosed with PMR I asked for a DEXA scan on the NHS but was refused. I took Resindronate/Alendronic acid for a year as instructed but suffered with bad side effects and IBS. I’ve now had 2 annual REMS scans with OsteoscanUK and will be having a third in three weeks time. I live in the Midlands and my scans have all been with the same doctor who was previously an orthopaedic surgeon. As with everything the price has gone up each year (the next one is costing me £230). I may ultimately have to go onto bisphosphonates again as I currently have osteopenia verging on osteoporosis. I haven’t had to get a referral from my Gp for these scans. 🌸
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