I keep reading about dexascan on this forum, should everybody have one, as my doctor has not said anything to me, but saying that i think she is learing along with myself about this condition.
She is really good, as i go armed with all my info that Eileen tells me about and as yet she has not questioned me about anything i have asked.
Hi Margaret -I have not had a Dexascan, one reason I stopped the AA. When I went to my GP he was not that happy that I had 'disobeyed' him, when I explained my side effects from taking it and that it was only prescribed 'just in case' his attitude changed but still has not sent me for a scan! Now I'm down to 7 mg of preds it's not so important.
I had a scan in connection with starting prednisolone as a precaution - good job that is the only reason I found out that I had osteoporosis - I hadn't started feeling any symptoms so they caught it and could start stablilising the condition.
Had a new scan last year to see if there was any change - a slight improvement. Am booked in for a new scan in August.
I did think that a dexascan was par for the course when starting prednisolone? Maybe not in UK?
Sometimes you just have to ask and point out that longterm use of pred can have an effect on your bones. It is best to get a baseline within 6 months of starting pred.
Both my GP and Rheumy arranged for a Dexa Scan within three months of being on high dose because of GCA. Bones were fine and still are 7 years down the line, 5 with pred and 3 without pred.
If you've never had a DEXA scan and are now on long term steroids, then you must insist on one, at least to get a baseline reading, otherwise if you are diagnosed with osteoporosis in the future you will never know whether it was there before steroids or caused by the steroids. I was refused a DEXA at the outset by both my rheumy and GP, both saying that there was a long one year waiting list at the time anyway, so I asked to be referred privately (they were both happy with that!!!). My scan was normal, and my rheumy was quite happy to repeat it during the following years on steroids - they showed only a very slight deterioration into the osteopenia range (the stage before osteoporois) but not needing any treatment. Now 3 years since stopping Pred, and my latest scan actually showed a tiny improvement.
It is mentioned in the BSR guidelines - patients under 65 should started on calcium and vit D as bone protection and sent for a dexascan and then a decision made about any further medication on the basis of the result. Then it should be repeated every couple of years to see if there is a change. The received wisdom is that the majority of the change in bone density, if it is going to happen, will occur during the first few months so that it makes sense, they feel, to do the first scan after about 3 months. Scans can only be compared if done on the same machine and they are not sensitive enough to detect very small changes - hence the 2 year gaps in re-doing them plus the demand for the scans. Being on long term pred, especially high dose. is supposed to make you a priority.
As Janet says - some people already have osteoporosis or close to it and they do need AA or something like it to improve the situation. Many others have excellent bone density and simply don't need to add another pill to the mix at this point - and we know of over-80-year-olds with perfectly good bones despite years on pred and no AA. But there can be 52-year-olds with osteoporosis that the doctors wouldn't dream did so or the opposite - someone lately was found to have excessively high bone density which can be a sign of other problems and being given AA without knowing that might have led to problems.
The bottom line is you can't tell who needs or doesn't need AA (or one of its classmates) so a dexascan should be done to find out. They aren't horrendously expensive - a couple of English hospitals even offer them privately for about £55 - so really it is money well spent by the practice to avoid the cost of unnecessary drugs and, more importantly, the risk of the side effects. A month's supply of AA is up to about £4 - a year's supply pays for a dexascan.
How I wish that everyone with PMR and/or GCA would read and download the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment of both.
They are freely available on the websites of the BSR website, NHS PMR GCA UK North East, PMR&GCA Scotland and PMR GCA UK.
There will be new guidelines shortly which patients have had a hand in and worked hard with the professionals.
Hi Margaret,
My internist did not order my dexa scan. My cardiologist wanted it. So I had him order it. It was within normal limits. Just playing with the healthcare system.
Charlie 44644
In my area, we have a fairly new DEXA scanner, donated by fundraising and installed by royal dignatories. I did not want a DEXA scan last April and was cursorily told 'it's normal' which I expected. But this April, having changed my GP, I was sent for a scan without even being consulted. I'm only on 7mg of prednisolone for the past 6 months and take daily vitamins and minerals, plenty of sunshine and a pint of milk a day. If you have a scanner standing idle,the doctors will fill it to keep the staff employed. If there is a queue for the scanner, you are unlikely to get an annual appointment. If you need Aledronic Acid, they should not prescribe it without knowing you need it and they know if you need it by giving you a DEXA.
Thank you Mrs O, i have been on pred since January of this year, i will mention it to my doctor next time i see her, there is so much to ask about iand i dont want her to think i am a busybody as she is so good.
Thank you Eileen as i said to Mrs O i will mention it to my doctor,
Eileen please excuse my ignorance but what is AA, i have read that some people dont want to be on it, if i know more information about it just incase my doctor mentioned it to me. Many thanks
Alendronic Acid - it is the first line medication for bone building medication for people at risk of osteoporosis since it is the cheapest. The next in price is risendronate I think.
They are both from the drug group called bisphosphonates so have similar side effects although the risendronate is said to have fewer. Neither should be given to someone who has a history of gastric problems. Then there is strontium ranelate - it must not be used for anyone with a family cardiac history or DVTs. You start at the first option and work through the list. They come as a weekly or monthly tablet.
The further options are very much more expensive but are approved for use on the NHS provided you cannot use the others - either because of contraindications or the side-effects you experience. They are injections I think and are given every 6 months or even once a year.
I had a scan last year and was told I could not have another one for three years on the NHS. Are you able to have one yearly?
I believe that the BSR Guidelines (6) suggested that anyone 65 or over should be given Alendronic Acid or equivalent and not to bother with a DEXA scan. I am not sure if that guideline has been changed. It may explain why so many doctors are so keen on AA though.
Ptolemy, you're right and I've always also felt that may be the reason for some GPs pushing AA.
The BSR guidelines state:
"Individuals with high fracture risk, eg aged 65+ years or prior fragility fracture: Bisophosphonate with calcium and vitamin D supplementation. DEXA not required.
Other individuals: Calcium and vitamin D supplementation when starting steroid therapy. DEXA scan recommended. A bone-sparing agent may be indicated if T score is -1.5 or lower.
Individuals requiring high initial steroid dose: Bisphosphonate with calcium and vitamin D supplementation (because likely to have higher cumulative steroid dose)."
It's concerning that all those of us aged over 65 should be considered "Individuals with high facture risk", when quite clearly some of us are in our 70's and have no bone thinning showing on our DEXA scans. PLUS at least a couple of us on this forum have normal bone density in spite of
probably having the "higher cumulative steroid dose" referred to due to the high starting dose for GCA.
It will be interesting to see whethet the new guidelines when published contain any changes to this section.
hi margaret where you been i not had a dexe either must be wakefield gp thing lol x
I think it is historical - it was assumed that little old ladies who had reached menopause in their late 40s would be osteoporitic by their mid 60s. We are more active, have had far better diets and menopause is far later these days - but the concepts haven't kept up. In the past it was an assumption that had to be made and it wasn't until the mid-80s that dexascanners became available to actually measure bone density and then there was a delay before they became common. We are probably the first generation to have such access to a means of measuring whether we are at real risk of fractures - previously you found out when you had fallen and broken a hip and were bedridden.
It is incredible that the BRS guidelines which were written at the end of 2009, less than five and a half years ago, should still think that way though.
Yes - but it all depends on what they learnt at a particular stage of their training! It just sticks and they struggle to readjust their ideas - and many of the senior rheumatologists now trained in the 1980/90s and haven't brushed up their orthopaedics knowledge since then. You do see a big difference in the younger ones who trained in medicine since 2000 - they are also much more open to the expert patient concept. For some reason they feel less threatened. There are a few who are hovering around retirement who are now even more actively involved in research and you can see them changing their attitudes as they work with the much younger colleagues.