Osteoporosis diagnosis please help

[JenaWren]

I've just had a text from my Drs diagnosing osteoporosis following a DEXA scan. I'm in total shock.

I'm only 54.

They prescribed alendronic acid which I know has some potentially serious side efffects.

Can anyone help me understand a bit more until I get get to speak to a doctor.

I'm in a bit of a mess at the moment.

Apparently they do.

I've spoken to the surgery and they have booked me in for more blood tests and a GP call back later today.

Have you any experience that can help?

That right.

Agreed it's an utterly shit thing to do.

Right now I just want to understand the implications. I'm only 54. It feels like the end of the world.

And thank you for taking the time to reply. I feel so alone. My partner is on his way over but it will be a while before he gets here.

That sounds shocking OP, I'm very sorry.

The Royal Osteoporosis society has a helpline and you might find some helpful advice there. (Camilla is patron as her mother suffered from osteoporosis).

You are young to have had a dexa scan - have you suffered fractures or some other reason why you were referred for this? I'm older than you and when I asked about a dexa scan, as my mother also had osteoporosis, I was told I was too young.

Some hospitals have specialist osteoporosis services, so make sure you get referred to the experts. It's not for your GPs to just dish out some tablets, you are young and need the best treatment.
[[https://theros.org.uk/
theros.org.uk/]]/_

https://theros.org.uk//_

Just reposting the link in case it wasn't clear.

I was diagnosed with pre-osteoporosis a couple of years ago. I have zolendronic infusions x2 annually and take x4 calcium/D3 supplements daily. If you are 54, what about HRT?

It's dreadful you have received a text.

The first thing you need is your actual DEXA scan results. Osteoporosis is a sliding scale of 'just' to 'severe'.

Can I ask why you had the scan? Have you had a fracture or are you at high risk anyway?

Your GP has prescribed the bog standard treatment. Depending on your test results this may be correct, or not, as there are others available that are more powerful but need specialist input from a rheumatologist.

I'd also suggest you consider HRT if you are not already on it.
It is licensed for prevention and treatment of women under 60 with osteoporosis or low bone density.

(I have personal experience of all of this as well as some professional experience as a health writer.)

You can pick my brains!

It doesn't say anything that will help. Just that the DEXA scan indicates osteoporosis and Aledronic acid and calcium / vit D are prescribed.

@Papyrophile I am a bit confused by your post as infusions are not usually given for osteopenia (which is what I assume you mean by pre-osteoporosis.)
They are actually contraindicated for young women with osteopenia (I was told by a specialist) and the preferred treatment is HRT.

@JenaWren Phone the drs and ask for a copy of your scan results.

Osteoporosis starts with T-score of -2.5 and goes downwards depending on how severe it is.

The DEXA scan or ultrasound will give you a number called a T-score, which represents how close you are to average peak bone density. The World Health Organization has established the following classification system for bone density:

• If your T-score is –1 or greater: your bone density is considered normal.
• If your T-score is between –1 and –2.5: you have low bone density, known as osteopenia, but not osteoporosis.
• If your T-score is –2.5 or less: you have osteoporosis, even if you haven't yet broken a bone.

Don’t worry, you are not alone. I’m in the same situation as are many other women. I’m 58 and I feel really cross at the situation. In my case it is related to the medication I am on following breast cancer, which meant I could not have HRT.

It is perfectly possible to live normally with osteoporosis, but it is a good idea to do as much as possible to prevent it from getting worse or even try to reverse it.

Have you seen this thread;

https://www.mumsnet.com/talk/exercise/4906190-exercising-with-osteoporosis?reply=129519715

Also Google the Royal Osteoporosis Society, loads of good info on their website.

Thank you this is great advice.

Yes - I fractured my pelvis coming off my road bike. It was a high speed crash and everyone thought osteoporosis unlikely.

I've really been through it over the last 2 months. The fracture wasn't diagnosed for 3 weeks. As a result I got a DVT. And now osteoporosis. It's a lot to deal with.

How long ago did your periods stop @JenaWren

You need to insist on a referral to a rheumatologist.

If your osteo is severe, there are other treatments available. The one you are on is basic. You can only use it for 2-5 years anyway. This is because the long term side effects are not known (and they can be a risk in themselves.)

You may need to start on other treatments now which could be daily injections, biannual infusions, or other treatments.

HRT should be considered too for someone as young as you.

Thank you all - some great advice here. Checking out the sites and the helpline.

I was about 48 when my periods stopped.

I would suggest you inform yourself before your appointment so that you can ask good questions.

Here is the NHS information

https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions/osteoporosis

But also look at this, which may be more detailed

https://my.clevelandclinic.org/health/diseases/4443-osteoporosis

I was diagnosed with osteoporosis in my mid-50s and took a bisphosphonate - which is what alendronic acidic is - for several years, without any side effects. This, together with load-bearing exercise, stabilized my osteoporosis and partially reversed my osteopenia. I'm now nearly 70 a d super fit and very healthy!

Questions to ask your physician:

Where exactly is the osteoporosis located? What about osteopenia? Are there any micro-fractures?

Details of the treatment plan and reassurance regarding the medication prescribed. How long are you expected to be on it?

Ask about HRT, which most likely will be of great benefit to you.

Ask how much calcium. And vitamin D you should be taking each day. Any other supplements or dietary adjustments that might help?

Ask for a physiotherapy referral so that you can be shown the best exercises for your condition, without risk of fractures. Appropriate regular exercise will be key in how your condition develops!

Thank you these are great questions and advice.

Just spoke to a nurse at the Royal Osteoporosis Society who was very kind.

Waiting on a call back from my GP - I think the main thing is to get my scan results explained to work out how severe things are. Hopefully because I've had no other symptoms it's been picked up early .

This thread has been great helping me though a really difficult time. Thank you all.