Always good to share: Has anyone ever... - Bone Health and O...

Bone Health and Osteoporosis UK

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Always good to share

Mirra1 profile image
9 Replies

Has anyone ever done some type of poll or survey as to what drugs actually work for bone health?

I've read some people have had bad experiences with the drugs. Perhaps people could "crowd share experiences". Just a thought...have a good one!

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Mirra1 profile image
Mirra1
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9 Replies
Met00 profile image
Met00

If you look at the Patient Information Leaflet (available online) for each medication, it gives the incidence of a whole variety of side effects: "common (up to 1 in 10)", "uncommon (up to 1 in 100)" , "rare (up to 1 in 1000)" and "very rare (up to 1 in 10000)". Of course that depends on people reporting side effects and I do wonder whether the more common ones in particular would be under-reported.

Mirra1 profile image
Mirra1 in reply to Met00

Thank you for the information!

t1gernidster profile image
t1gernidster

That’s what people do on this forum. I have made decisions based on people’s experiences here and they have been incredibly helpful.

Mirra1 profile image
Mirra1 in reply to t1gernidster

Agreed!

Smittybear7 profile image
Smittybear7 in reply to t1gernidster

Agree

MWZ3 profile image
MWZ3

Yes, that’s wise because we are primary source material. I refused the drugs and now know I should never have been offered them. According to an echo light scan the hips are normal and the back is under -2 so nowhere near osteoporosis. Even at -2.5 people are not bad. Big pharma paid for the original DEXA machines because they could see the potential for making a lot of money.

MDP1950 profile image
MDP1950 in reply to MWZ3

How do you know that 'Big Pharma' paid for the original DXA machine and why would that be a bad thing? Surely it's helped many thousands of people get a proper diagnosis and relevant reatment?

MWZ3 profile image
MWZ3 in reply to MDP1950

That’s up to you to decide if their motivation was pure or money making. Research to decide the veracity of the beginning of the DEXA machines. I don’t personally trust the machines based on my own results that were too varied to be accurate. -5 on the wrist but -2 or less on hips and -3 to -4 on the back. As they’re are all my bones I don’t believe those results. I decided to have an echo light scan because of this and bullying by some medical people over ten years. I personally trust the latter test more but that’s my choice. You should do your own research to decide for yourself.

ROSModerator profile image
ROSModeratorPartner

Thanks everyone for your comments in this discussion about REMS. We’ve noticed that some people have been saying that REMs is more reliable than DXA scanning and is the best test to understand your bone strength. The current up to date expert-view, based on the research evidence is that REMs is an interesting scanning method which is currently being researched. But it is not yet accepted by experts in the field of bone measurement as a reliable and fully tested approach to understand how strong your bones are.

We have a video youtube.com/watch?v=YS9Raxh... and web page theros.org.uk/information-a... which gives more detailed information about this topic.. You can hear more from an expert (30.15) . The scans and tests section of our website tells you the best ways to investigate and understand bone strength.

This can be a tricky area to understand because no scan or test can perfectly explain bone strength and we all want a definite answer especially if we are making decisions about medications. But just a reminder, please don’t post anything as ‘fact’ when it’s a personal view and not yet proven as it can be confusing.

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