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.

@MarshmellowMoon Resistance exercises can work but they are not suitable for everyone. I had post-birth issues that needed surgery. Weight lifting, low squats and almost all the exercises on that list are complete no-nos for me (and many women who have had pelvic floor damage or issues post menopause when hormones fall.)

There is a women's physio Michelle Kenway who has produced videos and recommended exercises for women that can build bones.

I was diagnosed 2 years ago.
Before I started alendronic acid I spoke to the ROS and my dentist. Both were very helpful.
Unfortunately a back injury has prevented much in the way of impact exercise but I am starting on that now it has improved.
Recently I have become concerned about taking calcium supplements because of the possibilty of furring arteries. I spoke to a nurse last week at ROC and I am going to try and massively increase my calcium intake and stop the supplements. She recommended 1200 to 1500mg for someone in my position (I have RA as well). Also a high dose of vitamin D.
I'm recording my calcium intake at the moment to see how much I am getting from food.

Incidentally I was given the news as brutally as you. My Rheumatologist had been reluctant to give me a dexa scan. When I saw him for the results he had forgotten and his parting words were oh yes you have osteoporosis. I'll prescribe something. That was the full extent of it. I've had to find out more for myself.

Google Liz Court Pilates Pelvic Floor classes. Liz does so much training to deliver really effective pelvic floor training alongside her Pilates classes. She is very good, totally comitted and funny with it. It's all remote via Zoom.

Liz Court is a Pilates teacher in SE Cornwall, and a good one, for novices and intermediates. All mat work, most of her students, like me, are 50+, but many are much older and do one or two classes a week. She works you hard, but within your physical competence. It also helps that she has muscular sketetal issues so has worked out work arounds to enable participation. But I have been doing Pilates for almost 20 years, and it can still be challenging.

I've read many conflicting articles. It's hard to know who to believe. The fact is there's nothing cures it, and barely anything makes it any better. All these calcium tablets are disputed by some. There's literally no answer, no solution. Nothing that makes it better, very little that makes it stop deteriorating. The general answers are : eat well, exercise, and eat a good diet. and you feel like saying what the fuck? are you serious? is that all the advice you've got to offer?

Apparently there are ways to learn to life with advice from a professional on the pelvic floor but yes, it won't be possible for everyone.

The women's physio Michelle Kenway (Australia based) does this on youtube etc. Basically, you need to lift weights seated, and not do deep squats.

The ROS also has videos on their website.

Interestingly one UK endocrinologist who is on the BMS website (their videos) says exercise can only result in very small gains and he advocates estrogen as the only proven treatment, comparable to bisphosphonates, but with heart benefits too.

@Oblomov23 I personally have moved from 'almost osteoporosis' to mild osteopenia, with HRT, diet and exercise within 15 years. Improvement is possible.

@JinglingSpringbells
Really, that's interesting. How exactly please? Exactly? I've been on HRT for quite a few years. I can't see how all that is gonna change osteoporosis back to osteopenia. How?

Dexa scan, from what to what, what grades, what %'s? have you managed to change it? Categorise it? from moving down from osteoporosis back to osteopenia.

@MarshmellowMoon yes, unfortunately! But I have been completely cured by surgery. It is a little known disease and I’d never heard of it until I was diagnosed. Lots of medical staff don’t seem to really understand it, and the range of symptoms vary so much and can be quite vague, I think it is commonly missed or misdiagnosed as things like menopause or fibromyalgia. Definitely worth considering. The important thing is that for a diagnosis you need calcium, PTH and ideally Vit D tested together from the same blood draw as it is the relationship between the levels that indicates a problem.

https://www.nhs.uk/conditions/hyperparathyroidism/

Why did you have the Dexa scan, have you had a low impact fracture or do you have risk factors for osteoporosis?
It's better that you know now and can start Rx.
It's treated with medication.

My periods stopped when I was 48 so 6 years ago.

I did mention upthread but easy to miss as there's so many posts and great advice on here.

There's lots for me to think about but my priority is stopping the bone loss and improving my bone health as much as possible.

I'm really heartened by the pp who are living well with osteoporosis. I want to be like that.

Love the advice on weight bearing exercise - I have a scientific background so the evidence based approach works well for me.

I will also check out dietary calcium. My GP said something similar about it being possible to do and better than supplements.

Does anyone have experience of taking bisphosphonates? I'm not too worried about the rare side effects but some of the more common ones sound unpleasant.

@Oblomov23 You can appreciate I don't want to put all my medical details online but I was on the cusp of osteoporosis (hips) even though I was not post menopause.

Bone is living tissue like skin. It's entirely possible to build bone. Bone density loss starts when the old bone is lost at a faster rate than new bone is laid down. This happens post menopause when the bone loss can be 5% a year for a few years.

Estrogen plays a major part in building new bone (it's a complicated process but that's the basis of it) so supplementing it (HRT) has been shown to improve bone density. There are loads of scientific papers showing the percentage of improvement with time/over years.

Drugs like bisphosphonates cement the dead bone in place and stop it being lost. But they don't create new living bone. That's why there is some risk of micro fractures in time, because dead bone still breaks even though it's 'dense'.

It's another reason why younger women should consider HRT as a treatment. Along with enough calcium and the right exercises, it is possible to build new bone. Diet is also important as a more alkaline diet with loads of fruit and veg is thought to help. Fizzy drinks that contain phosphoric acid are bad for bones and of course, smoking.

The Royal Osteoporosis Society has loads of info on this.

There are books and online videos of the right exercises to do for each part of the body (mainly hips and spines), using dumb bells or ankle weights. This is what I've done as well as walking (quite energetically, up hills.)

I'm sure you will get some improvement but also check you are on the right dose of HRT to make a difference. Are you having a scan every 2 to 3 years? And is your HRT being monitored to see how it's working?

Hope this helps.

Think it's Vit D, PTH and serum Ca.
Don't think we do urinary Ca at all

I was on Fosamax for several years. Not sure how long, but I never experienced any side effects whatsoever. Nowadays there are many more bisphosphonates available. Obviously some women have had problems with these medications, so all you can do is give it a try and see how you get on.

When I was diagnosed over 15 years ago, HRT had a bad rap and many doctors were hesitant to prescribe it. There is much more data available now and I wouldn't hesitate to go on it for a few years if I were younger.

Does anyone have experience of taking bisphosphonates? I'm not too worried about the rare side effects but some of the more common ones sound unpleasant.

Yes, I take alendronic acid.
I saw my dentist before taking Alendronic acid and he was very reassuring. He does check ups every six months now. The risk is with tooth extraction and they won't know if you are affected until you have a tooth out.
I take it exactly as described, which is once a week first thing in the morning. You have to remain upright and have nothing to eat or drink for 30 minutes. It's tricky if you have digestive issues or refIux but I had no side effects.
However I havegot gastritis in April, caused by something else and had to stop it for a while. The alternative is an infusion but the risks increase with that so I want to avoid it.
You do need extra calcium because the bisphosphonates actually increase your body's use of calcium.
If you can't take it orally the infusion is zoledronic acid, it's a step up and the risks are higher.

theros.org.uk/information-and-support/osteoporosis/treatment/

All bisphosphonates stay in your system for five years.

Incidentally while pilates is very good for you and I do it regularly it's not, on it's own, particularly helpful for bones. You need impact. Something that jars the skeleton, as well as muscle strengthening.
https://theros.org.uk/information-and-support/bone-health/exercise-for-bones/

Meant to highlight that first para as my post was in answer to that question.

Wow - thanks for sharing your experience Ceph. That is really helpful and very reassuring.

Hi I've had a recent diagnosis too, I'm a similar age to you. Osteopenia in thigh bone reading on DEXA, osteoporosis in spine 2.4. GP asked for blood and urine to screen for other causes, says will px calcium and adenderonic acid. She said one of the most important things I can do is to maintain strong muscles and soft tissues, as these will protect the fragile bones, so Ive booked a personal trainer. I'm trying to be positive and take this as a sign to indulge in looking after myself. Good luck Jena

This is the consensus statement on treatment and prevention from the British Menopause Society.

https://thebms.org.uk/publications/consensus-statements/prevention-and-treatment-of-osteoporosis-in-women/

It's worth noting that they mention caution when using bisphosphonates with younger women and considering HRT as the other option, because it is not known how long bisphosphonates stay in the body.

People who use them have to have a rest from them after 5 years, for that reason.

Prevention and treatment of osteoporosis in post menopausal women

Summary

The British Menopause Society Council aims to aid health professionals to inform and advise women about post reproductive health. Osteoporosis affects 1 in 3 women. This guidance regarding oestrogen and non oestrogen based treatments for osteoporosis responds to the controversies about the benefits and risks of individual agents. Treatment choice should be based on up to date evidence based information and targeted to individual women’s needs.

Summary practice points

• HRT reduces the risk of both spine and hip as well as other osteoporotic fractures.

• Oestrogen remains the treatment of choice for osteoporosis prevention in menopausal women, and especially in those with premature ovarian insufficiency.

• Bisphosphonates are effective for treatment of established osteoporosis, reducing both spine and hip fractures.

• Bisphosphonates have a very long skeletal retention time and hence should be used with caution in younger postmenopausal women (e.g. those aged below 65 years).

• Denosumab is an effective treatment for reducing spine and hip fractures in osteoporotic women.

• Denosumab should be avoided in women with increased susceptibility to infections.

• There may be an increased risk of fractures after denosumab discontinuation.

• Provision of adequate dietary or supplemental calcium and vitamin D is a part of osteoporosis management

• The effects of calcium and vitamin D supplements alone on fracture reduction however, are contradictory and may depend on the study population.