I had a DEXA scan in 2020, as far as I can see the only worrying result was the neck of femur -2.7.
I have just had another DEXA scan on a different machine, and the same result was -2.9. To me, that is not a great difference, having been on steroids for 2 1/2 years.
I now have been told I should go onto Alendronic acid which I have avoided so far. Or 6 monthly injections , and having done a bit of research, have got quite worried about this.
Getting quite stressed as I really don’t want to do either!!
Just wondering of other’s experiences with this situation, and how bad is -2.9. Would be so grateful to get some advice please
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Hollyberry12
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Are the two measurements you mention T-scores or Z-scores?
I had a bone scan in May 2022, one year after diagnosis of PMR and one year of being on Prednisone (starting dose, 40 mg daily, currently tapering to 4.5 mg):
Total Hip: T-score: -1.8, Z-score: -1.0 (osteopenia)
Because I have osteoporosis in my spine, I decided, after doing a lot of research, to start taking Apo-Risedronate DR (35 mg once a week). I started taking it July 2022 and I haven't had any side effects so far that I've noticed.
A bone density scan compares your bone density with the bone density expected for a young healthy adult or a healthy adult of your own age, gender and ethnicity.
The difference is calculated as a standard deviation (SD) score. This measures the difference between your bone density and the expected value.
The difference between your measurement and that of a young healthy adult is known as a T score,
The difference between your measurement and that of someone of the same age is known as a Z score.
The World Health Organization (WHO) classifies T scores as follows:
above -1 SD is normal
between -1 and -2.5 SD is defined as mildly reduced bone mineral density (BMD) compared with peak bone mass (PBM)
at or below -2.5 SD is defined as osteoporosis
If your Z score is below -2, your bone density is lower than it should be for someone of your age.
Although BMD results provide a good indication of bone strength, the results of a bone density scan will not necessarily predict whether you'll get a fracture.
For example, someone with low bone density may never break a bone, whereas someone with average bone density may have several fractures.This is because other factors, such as age, sex or whether you have previously had a fall, also determine if you're likely to sustain a fracture.
Your doctor will consider all of your individual risk factors before deciding if treatment is necessary.’
Do you have any other readings rather than just neck of femur? I think I would try and get hold of the other readings before making a decision. I did read in some American Medical Journal that the use of bisphosohonates such as Alendronic Acid has decreased recently. They did not give the reason unfortunately.
"The factors most strongly associated with discontinuation of alendronate were: benzodiazepine prescription (adjusted odds ratio [aOR] = 2.5; 95% confidence interval [CI] 2.1, 3.0), having a dual-energy X-ray absorptiometry (DXA) scan (aOR = 1.8; 95% CI 1.7, 2.0), and skilled nursing facility care utilization (aOR = 1.8; 95% CI 1.6, 2.1) ...
Our national evaluation of bisphosphonate discontinuation showed that an increasing proportion of patients on long-term bisphosphonate therapy discontinue medications. The factors associated with discontinuation of alendronate were primarily related to worsening of overall health status, whereas traditional factors associated with worsening bone health were associated with restarting osteoporosis medication.
... Over the last decade, there has been a significant decline in the use of bisphosphonates.(1,4) This decline is related, in part, to the fear of rare adverse events, namely osteonecrosis of the jaw (ONJ) and atypical femoral fractures."
I know someone with UCL who has been doing research with Oxford University, who was saying that they were none too sure about long term bisphosphonates and the effects on the bone. Things have been mentioned on radio too recently. I suppose Merck had done a wonderful sales job initially and people are now seeing the long term results.
Exactly. had they reserved their use for those who could be said to REALLY need them, then they'd probably have far fewer problems. But what medics learn at a certain stage of their career remsins fixed and it is very difficult to disillusion them,
Major problem is that medics forget how to read after they have qualified! Or they believe nothing changes. Same problem with antibiotics they should never have let GPs get their hands on them.
As people who follow my bone/medication comments on here no doubt know, I am a bit cynical about the motives of the drug developers. I believe women are under-researched and also considered fair game for making money.
(We see that money-grubbing tendency everywhere as a recent tv show pointed out how identical but differently packaged products cost significantly more when marketed specifically to females, e.g. a pink bike for a little girl costing more than a blue one for a little boy although every other detail was identical, or a box of naproxen marketed to relieve menstrual pain costing several $$$ more than the identical product marketed as a simple painkiller.)
My mother was a great cook and loves her food . She switched to the 6 monthly injection under her doctors advise and at 93 she lost all her jaw bones and cannot eat except blended food.
Oh that is a terrible shame. I hope this dismal result has been reported? I do hope your mother is doing okay otherwise but it must be really hard for her.
my 2 sisters are both on the injections and have had no side effects. Both have had vertebral fractures and a LOT of pain. My bones are ostepoenic but the spine cannot be measured due to arthritis...I have restarted taking risedronate (which is like alendronate)...its a bit of a nuisance taking it weekly but no side effects. Sisters are 80 and 70 and I am 73
Thank you so much for all your information and time.
This site has been invaluable to me. So much information, and hearing about other peoples experiences. In fact, I don’t know what I would’ve done without it. Now down to 3 mg, having taken tapering advice on here
I don’t post much, but read everything every morning.
I am on Risedronate Sodium 35 mg once a week and have severe Osteoporosis in my spine, neck and right hip, Osteopenia in left forearm.I have been on Risedronate since October and I haven't had any side effects, in fact it has made a big difference.
My last DEXA in January 2022 showed -3.9 in the hip and that was after 2 years 3 months on Pred. Dire result but I'm still resisting Zoledronic Acid. Have been taking calcium citrate supplement but only half recommended because of UTI's plus Vitamin D, Magnesium, MSM & Bovine Collagen hoping that makes a difference. Also dairy products where possible. Have no clue if I'm right by resisting Zoledronic, but the side effects give me the horrors.
I feel the same as you. and refused AA which was automatically prescribed.Took Adcal D3, but started getting UTIs. Then took Vit D plus K2, and had even more UTIs. Think I might’ve overdosed on that!!!
Have now ordered Sogar bone supplements. I had a bad fall in January, and had a hairline acetabular fracture So spent five weeks on crutches. Nobody mentioned osteoporosis! I’m now fine. If it hadn’t been for that I would be a bit more gung ho about the whole thing.
So sorry to hear about your fall. Five weeks on crutches must have been a nightmare. Hope the Sogar bone supplements help you. So many supplements and they cost so much! Who can afford to be ill these days?
A fragility fracture is one which occurs without significant (sometimes with no) trauma. Most fractures in human beings are not the result of osteoporosis but are caused by trauma through accidents, falls, etc. Improving our sense of balance and removing tripping hazards in the home are as important as any medication we can take to avoid breaking a bone. Load-bearing exercise (likewalking!) is also very important.
As I have just said below - even I would accept something if I had a t-score of -3,9, that is very low bone density. Low bone density doesn't always equate to fragile but it is very likely, especially in the hip which is the fracture all orthopods dread in the elderly as it is a major injury and usually lifechanging at best, Diet isn't going to improve that level of loss of bone density any time soon and I would be asking for Prolia/denosumab as it builds bone quite quickly. You then either remain on it longterm or you must switch to a traditional bisphosphonate to maintain the improvement.
If you read the PIL for paracetamol or ibuprofen you would never take them either - side effects lists mention ALL the effects patients have associated with the drug that can't be proven NOT to be due to it - that isn't the same as being due to it. As with pred, no-one gets them all, some get none.
Not stupid at all but there isn't a straight answer! It depends. This probably the most detailed article I have seen about it. The longer lasting effects seem to be the dental ones - it is really important to get your teeth checked before starting it.
What you probably know is even if you have no side effects but decide not to continue with Prolia you should take another bone medication to guard against rebound OP. Initially we were told that one dose would be safe if you didn't continue but I've since read, can't put my hands on it right now, that discontinuing after even one dose might be bad in some cases, so best not to take any chances but switch over to a bisphosphonate or teriparatide before the denosumab dose has worn off.
What a minefield. Im not on it but my rheumy was pushing for me "for my bones" some time ago to go on something. He said an injection so i presume its prolia. There was no reason at the time he hadnt even seen a dexa scan. When i did have one it was ok, but one of the scores was kinda bordeline, wouldnt take much to tip it over!! He didnt see it it went to my GP. Im sctually afraid to have one which would be due now. I constantly feel like im dodging bloomin bullets!!! 🙉Thanks Heron.
As I outline in my story, I was recommended AA even though neither I or my doctor were given my t-score. Thankfully I'd done so much reading by the time she wanted to write the prescription I felt quite comfortable refusing. I do acknowlege I turned out not to be borderline (-2) but given how relatively quickly I became -1.6 I don't really see why people like us aren't given options other than drugs. Guess we have to blame the med schools.
Prolia (denosumab) is an antiresorptive drug same as bisphosphonates (alendronic acid and others). Prolia stops osteoclast activity so old bone is not discarded so builds up increasing density but its not new strong bone p, this process also slows osteoblast activity.
When Prolia is stopped/delayed/missed for any reason then osteoclasts start up again and go into overdrive and very rapidly remove old stored bone back to pre treatment levels or even lower. This brings the real risk of spontaneous multiple vertebral fractures occurring during this ‘rebound phenomenon’ which happens irrespective of number of doses and the time range of these fractures are reported by manufacturers as 7-43 months from last dose. Only way to reduce this risk is to take another antiresorptive bisphosphonate to try and safely ‘relay’ off Prolia. Manufacturers and research all state this. Use of bone turnover marker blood tests will allow monitoring of the rebound allowing stopping of relay drug as rebound stops. Rebound phenomenon does not occur with any other osteoporosis drug and it should be discussed by medics before prescribing it as if unable to take the relay bisphosphonate drug then should the Dr even prescribe it to avoid patient being left in Prolia trap with no available relat drug.
I have osteoporosis and took Risedronate for 5 years up to 15 months ago, with no adverse side effects. The main consideration with the bisphosphonate drugs is to have any invasive dental treatment done (eg extractions!) before you start to take the medication. However, I have recently had an extraction, 12 months after stopping Risedronate and all is healed, thank goodness! Have a word with your dentist, maybe?
Thanks Rugger. Had a dental check up 8 months ago when I was more than considering the Zoledronic acid infusion. He said teeth were fine, but couldn't tell me any more about the effects of having the infusion than I'd already read about. He did say he wouldn't refuse dental treatment after I'd had the bone treatment however, which surprised me because the Rheumy told me no dentist would touch a patient who'd had biphosphonate treatments.
My NHS dentist was considering taking it out for me, but had second thoughts as it had broken while he was trying to root canal fill it, so there wasn't a lot to get hold of! He wanted me to have "the least traumatic extraction", because of the bisphophonate, so referred me to the hospital maxillofacial department and although I had to wait 51 weeks for the extraction, the dentist there has done a good job. The dental nurse at the hospital said that they take teeth out "all day and every day" whereas my own dentist might do an extraction only every couple of weeks. Your Rheumy was quite wrong.
I have denosumab and the nurse who does it told me the dnetist would want to know. He said it wouldn't affect any treatment, they would just be more careful when doing anything like extractions.
Minus 2.7 is well into the oseoporosis zone, so is -2,9 although you can't compare the two readings since they were done on different machines. Whatever - you have considerable osteoporosis in that hip and that is the joint they worry about most in the elderly as it can fracture easily if you fall and is a major injury.
The t-score is a measure of your bone density compared to what it would have been at its best in your 30s or so - very much lower which is what is usually seen. The z-score is comparing you to a population the same age as you and there you are about average - but that is just comparing you to a population with osteoporosis.
Risendronate is usually tolerated better in terms of gastric effects for tablets, There is also zolendronic acid that comes as annual infusions as well as the Prolia/denosumab you have been offered. There was a problem with Prolia where if you stop it, the very good increase in bone density is lost very quickly as a rebound effect. It is very good at improving bone density quite quickly so the ideal is to use it to improve the bone density and either continue it indefinitely so it stays good or switch to bisphosphonate infusions to maintain the level that has been achieved.
I am against the use of bisphosphonates "just in case" and I never took any but I have checked my bone density every few years all the time I have been on pred. However, if my t-scores got anywhere near what yours have been I would have accepted either an annual infusion or Prolia which is what I am more likely to be offered here in Italy.
Thank you for all that information. I didn’t properly understand the DEXA information. Do you think the Prolia injection every six months, which is the one I’m being offered, is better than taking Alendronic Acid? I am just a bit put off by the possible side effects of Prolia.
They are not significantly different from the potential side effects of any of the bone protection drugs. If it were me I'd try the Prolia/denosumab - very simple, you go to the clinic for a jab once every 6 months. Easy-peasy! My husband was put on it and he reacted to anything and everything - it didn't seem to bother him. If the first is too awful (unlikely) you don't have another,
Why should you have understood the DEXA stuff if they didn't explain it? If you are told something you don't understand, ask here, if we don't know, we'll find out. Turning medical-speak into people-speak was the purpose of my career for many years.
Thank you so much, that has all been so helpful. I think the stress comes from not being able to talk to a doctor easily these days. My lovely GP retired just before I got PMR. Just when I needed him most!!
The biggest difference is with the bisphosphonates the substance remains in the bones basically for the rest of your life when you stop taking them. With denosumab, and some of the other newer drugs, the benefits wear off relatively quickly. In the case of denosumab discontinuing the medications without immediately starting another, usually a bisphosphonate, can lead to rebound ostoporosis, often worse than the original condition, so once you start this medication, or a similar one, you are on it or something else forever.
Not to suggest your choice to take a medication is wrong, far from it, but there are people with rather terrible DXA scores who as long as they have not suffered a genuine fragility fracture have successfully elected to try non-medicine methods of improving bone density. The biggest risk for fracture is actually having already had a fracture. I know that seems to make about as much sense as the current public health advice to get sick so you don't get sick, but it is true if you avoid a fracture and you also do other things to improve your bone density you may be able to avoid taking medication.
If you haven't already read my story, please have a look. Even if you opt to take medication you may get some ideas about how to look after your bones in the future. Also, have you been checked for "secondary causes of osteoporosis" which include factors other than prednisone and aging?
You can also read interesting and enlightening comments about Prolia and other bone medications on the Bone Health and American Bone Health communities right here in HealthUnlocked.
I think the debate is always interesting, but having had 3 wedge fractures of the spine, I decided I wish I had done things differently. After the fractures I was given zoledrate infusions. These are done yearly and I had no side affects. Bisophates stop the bones losing more calcium. I then put myself on a programme of supplements which helped the bones absorb the calcium. I had not released that the time you take these is even more important, and what you wash them down with . Coffee is only good for flushing calcium straight into the urine, so it needs to be drunk at least an hour after calcium tablets, and magnesium is best before bed. There was also an interesting link recently about how bones talk to the rest of the body, i.e. soft tissue and organs. The research they are now doing is brilliant in understanding how the whole body works. I wish you well in your decision and journey. I have not had an infusion since as my last scan was good and this was taken on the wrist, in order not to have false readings.
I’ve been on alendronic acid for about two years and have had no problems or side affects. I was started on it when my dexa scan showed I had osteoporosis
More illuminating is often to know how often the same side effect appeared in the placebo group during the clinical trials. That is mentioned in the article I gave the link for above in my reply to powerwalk. In once case, oedema (swelling) occurred in 4,9% of patients on the Prolia - but also in 4,6% of the patients on a sugar pill!
I have tried many Biophosphonates over the years, could not to lerate them, in November had Zelondronic Acid in fusion...(15mins) no side effects.....hope this helps....
Surprised me, dreaded having the i nfusion because I cannot tolerate meds, but Rheumy advised with my readings. I reasoned if I had a reaction wouldn't have another. I am dizzy quite often and lose my balance, so tricky!....
I’m 55 and already have osteoporosis in my spine and osteopenia elsewhere. I was very fit and active before my PMR diagnosis in October’21 . It’s probably genetic for me as my mum was diagnosed with osteoporosis in her 70’s. She has had lots of spinal fractures and been in a lot of pain over the years. My consultant Rheumatologist kept pushing me to take weekly alendronic acid tablets but I refused - like you I was worried about side effects. However… I have recently had a zolendronic acid infusion and will have 2 more at yearly intervals - I haven’t had any side effects. My Mum has injections every 6 months and her last dexa showed improved scores ( she’s 82) I changed my mind as I really don’t want to be in the same position as my mum in 20 years time. I also pushed back about the weekly alendronic acid tablets… yearly infusion so much easier.
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