Aledronic acid

[Uglow]

hi should I get a dexa scan before starting Aledronic acid for osteoporosis. I’m very worried about Aledronic acid.

[Jemi7266]

I’m in the US and it’s my understanding that a DEXA is a test used to properly diagnose osteoporosis. So unless I had a DEXA I would never take an osteoporosis medication.

Just curious, what tests are used to diagnose your osteoporosis?

[Fruitandnutcase]

I’m in the U.K. and I wouldn’t even consider taking osteoporosis drugs without a DEXA. You can have no idea of your T scores for a start. How does your doctor know you have osteoporosis? Have you broken any bones? Even then I would want either a DEXA scan or a REMS scan - unfortunately that can only be done privately.

[Met00]

It's possible to diagnose osteoporosis without a DEXA scan if you've had a fragility fracture. However, a DEXA scan should still be given to confirm the diagnosis and to give a base-line to check against later. It also should be a personal choice whether or not to take the medication. Bisphosphonates like AA don't guarantee to prevent fractures, they simply reduce the risk. Most people with osteoporosis don't fracture, even if they don't take medication, while a fairly large proportion of people taking medication still fracture despite this. There's a helpful patient decision aid published by NICE, which you can find if you Google "bisphosphonates patient decision aid".

[711debbie in reply to Met00]

Get Dr. Susan Brown's newsletter from betterbones.com. She's sent a message about a new REMS scan:

"Conventional bone density testing by DEXA has been proven

error-laden and incapable of measuring bone strength or real fracture risk. In

fact, studies from around the world document that up to 80% of those who

experience an osteoporotic fracture do not have an “osteoporotic” bone

density as measured by today’s DEXA bone density testing. Most fractures

occur in those with “osteopenia “or even normal bone density as measured

by today’s bone density testing. On the other hand, many, especially small-

framed, lighter-weight women, are inaccurately given a diagnosis of

“osteoporosis” and told to take bone drugs.

What is needed is a safe, radiation-free way to test bone strength and

determine real fracture risk. This is just what the new Echolight R.E.M.S

testing offers. With this new Echolight R.E.M.S technology (click to learn

more), individuals can get an accurate picture of their bone strength, their

true bone density and their real risks of fracture."

[restlesspegs in reply to 711debbie]

Firstly, I seriously doubt the accuracy of REMs based on my personal experience with it.

Also, doctors should not be parroting stuff like "more people fracture with osteopenia" in an attempt to put patients mind at ease, where the simple fact is that far more people have osteopenia than osteoporosis, hence the numbers being higher.

They should be educating people on the relative risks. It stands that you are more than twice as likely to fracture with osteoporosis than osteopenia, and more than four times as likely than someone with normal BMD.

[osteo2021 in reply to restlesspegs]

I agree that one should get a scan before taking medication. Why not a REMS scan if you can afford it? Restlesspegs, can you tell me more about your experience with REMS and why you seriously doubt its accuracy?

[Hidden in reply to restlesspegs]

Interested in your post. I’ve been trying to find a REMS test here in U.S. to compare to my recent Dexa results. Many thx

[Met00 in reply to 711debbie]

I agree that REMS is more reliable, but Uglow asked whether she should have been prescribed AA without a DEXA scan. It's personal choice whether to pay for a private REMS scan (not available on the NHS), but DEXA is the NHS "gold standard" for diagnosing osteoporosis and I don't understand why anyone would be prescribed a powerful medication without first confirming the diagnosis.

[superbones]

I would because how do you know if you need it otherwise? I insisted on a dexa and it did show that I have osteoarthritis at -3.3. I tried AA and then Risedronate. AA made me exceptionally tired - abnormally so. Risedronate was another matter - after 10 days of taking the first tablet I got the headache from hell. I never have a headache. This turned into sinusitis so bad I had to go onto antibiotics. Then it went to my chest which is my weak point. More antibiotics. I am waiting for a private consultation with a rheumatologist which is taking ages to come through. Why is everything such a battle. I want to know how bad am I and can I control this with exercise. I am about to be 70 and very active with dog walking and at the sports club. Weight training yoga aqua and pilates. Many people are fine on these biphosphates but equally many are not. And the docs just seem to dole them out rather than give you a DEXA. I fought for a whole year to get the DEXA with me screaming at them "I will pay for goodness sake" Crazy or what...

[Fruitandnutcase in reply to superbones]

That’s interesting superbones - I started alendronic acid and among the other side effects I had I had to have three lots of antibiotics for three massive sinus infections

[Cappuccinobaby]

I agree with the others you need a dexa scan to confirm you have osteoporosiz. How does your Doctor know otherwise. Then if the dexa scan does confirm it, you need blood tests for calcium, vit d and parathyroid hormone doing to make sure its not caused by hyperparathroidism which can be cured.....

[Scandi123]

hello - have you had a fracture? It is possible to be given a diagnosis of osteoporosis without a scan if you’ve had a fracture.

But similar to other replys - personally I would 100% want a scan as the scores may inform your decision to takes the meds or not.

If you can afford a REM scan (private) as opposed to a dexa (nhs) then do that as it is generally believed to be more accurate. Ive had both - waiting for my REM, will be interesting to compare scores.

As for the AA - I just wanted to say - I was terrified of starting it. There is literally never been an anaesthetic/mainstream med/chemo med/supplement that I’ve not had side effects from. So it’s come as a huge surprise that I’ve been ABSOLUTELY FINE on the AA🤣. It’s only been a month - situ may change yet I guess, but it was not what I expected. So if your scores are bad, maybe worth a try???

Good luck. X

[Gillymar]

stay away from Alendronic Acid ! I took it some years ago and got two fractured femurs as a result. I am 90 and almost completely immobile following a stroke in October..

Keep smiling.

Gilly mar

[ROSModerator Partner in reply to Gillymar]

Thank you for sharing your thoughts about drug treatments for osteoporosis. We can understanding how distressing your experience has been . It must be so difficult not to feel very negative even though these side effects are rare . We have been reading across this thread and great to seeing everyone supporting each other - just a quick reminder of our community guidelines - not to give each other medical advice or tell others what they should do. We know it's difficult when you feel strongly.

[Gillymar in reply to ROSModerator]

Since this I have had a stroke. Nuff said for my determination now. Happy to be able to use typing on iPad though.

Gilly mar