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Original poster

Do you have osteoporosis?

41 replies

Existentialallday · 26/10/2022 16:32

I'm 55. I've had osteopenia for years, but recently my hip - neck of the femur, to be exact - has apparently tipped over the line and I have osteoporosis. I've not yet seen the scan results fully, so can't compare with previous, but everything else looks pretty similar, not much decline.

I can't take HRT now, but I've been taking calcium, Vit D for years, do lots of weight resistance work and am active/fit.

I'm considering whether to start with Bisphosphonates.

If you have osteoporosis, can you tell me if you take Bisphosphonates and if you tolerate them? Or if you have another approach, would love to hear.

I don't think I'm in danger of major stuff now, but I know I'm looking down the tunnel where things don't get better, as it were, however slowly I can ward it off.

OP posts:
Just2again · 26/10/2022 17:44

I’m probably in a similar position op. I haven’t been allowed another dexa scan to know the current state because of covid, but I have osteopenia due to breast cancer treatment (now finished) some years ago, I’m 58. Also can’t take HRT and am on the calcium and Vit D. I had a long chat with my dentist about this and he was a bit alarming so like you I’d like more information.
I’m hoping someone more knowledgeable comes along.

prunesandporridge · 26/10/2022 17:54

I have osteoporosis. I wasn't offered HRT, even though I had early menopause. I developed another condition that was treated with long term steroids and only after 3 fractures was I allowed a DXA scan. I couldn't tolerate bisphosphonates as my stomach was already very fragile due to steroids. I was referred to a rheumatologist and have had 3 infusions, each a year apart. I am due another DXA scan soon to determine whether things have improved. I take calcium and vitamin D regularly and walk as much as I can, although my mobility is limited due to other conditions.

Mosik · 26/10/2022 17:56

I was diagnosed last year with osteoporosis. I have RA and OA and had been taking steroids (much against my wishes).
I was very wary of Bisphosphonates but my bone density is quite poor. I had a long discussion with my dentist and I know various friends who have taken it.
I take alendronic acid and have been on it a year. I follow the instructions religeously and have had no side effects at all.
One thing I found extremely useful was the videos on the Royal Osteoporosis website. Particularly the one about drugs.
theros.org.uk/information-and-support/osteoporosis/newly-diagnosed/film-3-how-is-osteoporosis-treated/

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General health
Mosik · 26/10/2022 17:58

Although that website is very helpful it brought home to me that the best you can hope for with Bisphosphonates is that bone density stays the same.

Sleepinggreyhounds · 26/10/2022 17:58

I was diagnosed with osteoporosis of the spine and osteopenia in my thighs and hips. I took alandronic acid for a few years but was then moved to hrt. There has been a slight improvement in my DEXAs.

prunesandporridge · 26/10/2022 17:58

My dentist refused to take a tooth out for me due to being on bisphosphonates. He referred me to the hospital, much to my chagrin. (They got the most junior person in the building to practice on me and made a complete mess of it and nearly yanked my head off in the process). Dentists worry a lot about problems with bisphosphonates. One of the side effects is necrosis of the jaw, but I understand it is rare.

Mosik · 26/10/2022 21:07

@prunesandporridge my dentist wasn't phased by it. Said he would go out of his way to avoid extraction but if necessary he would do it.
I can't take HRT as I have history of breast cancer.

MILLYmo0se · 26/10/2022 21:14

I have osteoporosis, (osteopenic from mid 20s, premature menopause in my 30s at which point i tipped into osteoporosis)
Ive been on prolia since being post menopause but tbh im doubting my decision at the minute. Im reading a lot about rebound fractures and dental iasues after coming off it because of how it increases density. Tbh i think it was recommended too early for me as someone entering their 40s with no fractures. It works differently to the bisphosonates though (i think)

AnnaMagnani · 26/10/2022 21:19

Osteoporosis is rare, even in cancer patients who are having much much higher doses of bisphonates.

The key is to have any major dental work before you start and then keep up to date with checkups so you don't need more.

I've only seen it once and the patient hadn't been warned so went off and had an extraction while on treatment.

Original poster
Existentialallday · 26/10/2022 21:29

AnnaMagnani · 26/10/2022 21:19

Osteoporosis is rare, even in cancer patients who are having much much higher doses of bisphonates.

The key is to have any major dental work before you start and then keep up to date with checkups so you don't need more.

I've only seen it once and the patient hadn't been warned so went off and had an extraction while on treatment.

Do you mean, jaw necrosis is rare?

OP posts:
weebarra · 26/10/2022 21:32

It's something I worry about. BC at 37, now 45 and osteopenic. I think I'm bound to get it.

AnnaMagnani · 26/10/2022 21:33

Oh god yes, that's what you get from me typing on my phone.

But yes for cancer patients they could be having infusions every 4 weeks, not once a year. And it's still very rare.

Original poster
Existentialallday · 26/10/2022 21:53

AnnaMagnani · 26/10/2022 21:33

Oh god yes, that's what you get from me typing on my phone.

But yes for cancer patients they could be having infusions every 4 weeks, not once a year. And it's still very rare.

That's good to know. That's prob the main reason I'm nervous of going down the Bisphonates route. My mother freaked me out by saying she knew 'several people who've had jaw necrosis, although 2 had cancer...'

I have to weigh it all up. Do my research. The reality is that it's not going to get any better.

OP posts:
AnnaMagnani · 26/10/2022 22:10

I used to run a bisphonate cancer clinic.

Never had a case but we did make everyone finish dental work before starting.

A fair few had been given a dose before we saw them and they had never been warned about it or seen a dentist. Guess that's where the cases come from.

MrsCarson · 26/10/2022 22:13

I had a deja scan, due to familial history of osteoporosis and I have Coeliacs. I thought I was OK but had a call from GP office putting my on Ad Cal and Alendrolic Acid, I have only had one so far so not sure how it will affect me.
I need to get my weights back out and do some work.

MrsCarson · 26/10/2022 22:13

Deja? Dexa.

Original poster
Existentialallday · 27/10/2022 06:40

AnnaMagnani · 26/10/2022 22:10

I used to run a bisphonate cancer clinic.

Never had a case but we did make everyone finish dental work before starting.

A fair few had been given a dose before we saw them and they had never been warned about it or seen a dentist. Guess that's where the cases come from.

Thanks @AnnaMagnani - can I ask, though: for cancer patients, I presume the level of bisphonates taken was aggressive and more frequent than osteoporosis sufferers - and for a shorter period?

Whilst necrosis is rare, if you take bisphonates once a week for 5 years (the standard protocol for osteoporosis), how can you possibly know if you might dental work? My teeth are in good nick, but who knows over 5 years?

That's the concern

OP posts:
AnnaMagnani · 27/10/2022 08:32

If your teeth are in good nick, and you keep them in good nick it's unlikely you are going to be needing any extractions. Fillings are not a problem.

Cancer patients - infusion every 4 weeks for the rest of their lives, which can be years and years. There's no comparison to having one infusion once a year for 3 years.

Original poster
Existentialallday · 27/10/2022 11:37

AnnaMagnani · 27/10/2022 08:32

If your teeth are in good nick, and you keep them in good nick it's unlikely you are going to be needing any extractions. Fillings are not a problem.

Cancer patients - infusion every 4 weeks for the rest of their lives, which can be years and years. There's no comparison to having one infusion once a year for 3 years.

@AnnaMagnani I'm sorry, I didn't mean to trivalise the suffering of cancer patients. In any way! Of course, their suffering is far, far greater than anyone with osteoporosis. I thought the infusion was short term.

OP posts:
Reallybadidea · 27/10/2022 11:45

What are your vitamin D levels? I ask because I've been on vitamin D for years because of osteopenia and it was only when I increased the dose enough to get to almost the top of the normal range that I saw an increase in my bone density - marked improvement on DEXA 6 months later.

Mosik · 27/10/2022 12:37

for cancer patients, I presume the level of bisphonates taken was aggressive and more frequent than osteoporosis sufferers - and for a shorter period?

I believe it's the same, two years. Although they will usually have infusion rather than oral.
Zoledronic acid rather than alendronic. The infusion is slightly stronger and used also for people who don't tolerate oral drugs.

@Reallybadidea I've taken a high dose vitamin D for 2 years (much higher than the adcal I get on prescription. When I had my levels tested last year they were only just at normal level (I forget the numbers). This suggests that you probably need more than the NHS dose.
How often do you get a dexa scan? I was told two years.

Reallybadidea · 27/10/2022 12:42

Mosik · 27/10/2022 12:37

for cancer patients, I presume the level of bisphonates taken was aggressive and more frequent than osteoporosis sufferers - and for a shorter period?

I believe it's the same, two years. Although they will usually have infusion rather than oral.
Zoledronic acid rather than alendronic. The infusion is slightly stronger and used also for people who don't tolerate oral drugs.

@Reallybadidea I've taken a high dose vitamin D for 2 years (much higher than the adcal I get on prescription. When I had my levels tested last year they were only just at normal level (I forget the numbers). This suggests that you probably need more than the NHS dose.
How often do you get a dexa scan? I was told two years.

Yes exactly, was recommended 1000 units/day which didn't touch the sides. I now take 3000 units/day!

Tootsey11 · 27/10/2022 12:47

Op, why can't you take hrt???

Original poster
Existentialallday · 27/10/2022 13:18

Tootsey11 · 27/10/2022 12:47

Op, why can't you take hrt???

Sister has BC

OP posts:
Tootsey11 · 27/10/2022 17:19

And? That is no longer a reason not to take it. Speak to Newson clinic or other menopause specialist, you can and should be on it with osteoporosis.

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