I’m newly diagnosed with osteoporosis in my fifties. My spine t score isn’t good. But as I haven’t fractured I’m hoping my bone quality is good and am considering HRT instead of bone meds. I’m uncertain whether this is something that NHS rheumatologists advise or prescribe?
I wondered whether anyone has had experience of being advised to go on HRT by a consultant (or their GP) when they were diagnosed with severe or moderately severe osteoporosis? I know it is in the NOGG guidance for women under 60 and within 10 years of menopause but my impression is that NHS rheumatologists just advise bone meds. I could be totally wrong on this - maybe there are rheumatologists recommending their patients with t scores south of -3 go on HRT.
It would be great to hear other people’s experiences around this. To get an idea what is going on and what to expect.
I’ve been on HRT for just over 10 years now (early menopause at 42) and it hasn’t stopped me getting osteoporosis in my spine. No fractures though despite couple of high impact falls ( falling off a horse)!Now on Alendronic acid. Fit 53 year old, not over weight, good diet, plenty of exercise ( lots of walking, horse riding and looking after horses daily) possibly it could have had a worse T score if not on HRT but who knows.
Thanks for your reply. Hopefully the HRT has helped prevent your bone loss being worse even if it didn’t prevent osteoporosis. It sounds like you have had opportunities to fracture so maybe have good bone quality.
I understand that a trabecular bone scan is probably the best way to find out your bone quality. But maybe doctors don’t think bone quality is as important as t score for predicting fractures.
Are you having your bone markers monitored (CTX and P1NP)?
I’ve no idea what CTX and P1NP are. Had a DEXA scan last December as started steroids for PMR and they wanted to shove me straight on AA but I insisted on a DEXA first as I wasn’t aware of any problems, no back pain no breaks etc. my results were -2.8 in spine and -1.8 in hips. I’m tiny and very petit’ 5 ft 1 and just over 7 stone so I’m not going to have very big bones. I can’t see how they can’t be strong though. Rheumi told me I shouldn’t be lifting more than 11 kg and I laughed and asked her if she knew how much a bag of horse food weighs? 20kg which is not far off 1/2 my body weight. Been throwing them around for the last 30 odd years!
Are you still on steroids for PMR? Is that why they wanted to put you on Alendronate? Because your t score doesn’t look too bad being just inside the osteoporosis range. But if you have to stay on steroids then you need to be extra careful.
I’m 54 and my spine accord is -3.5 but as I haven’t fractured I think HRT may be ok for a few years. But I’m not sure whether rheumatologists would oversee managing or monitoring someone on HRT.
That’s why I’m trying to find out whether other people know or have experience - either not being monitored because they chose not to go on bone meds and went on HRT instead or being monitored on HRT.
Yes I’m still on the steroids. Down to 6mg now from 20mg last September and will be on them for a minimum of another 6 months, tapering. That’s if all goes well and the PMR goes into remission. I know some people still have their PMR after 4 years or more so who knows.
I can’t see how 2 months of steroids, which was where I was at when I had my DEXA, would have caused such a decline so quickly. Because of my score I’m happy ( kind of) to take the AA whilst I’m ion the steroids.
I hope you go into remission quickly and can get off the steroids. Especially if it is the steroids that have been the main driver in your bmd decline. You seem unsure. Maybe you had a low bone density before steroids and menopause? I think our teenage years is when we lay down the most bone - I’ve been thinking a lot about mine and that my decline is likely not just down to menopause. I was probably starting from a low base.
Are you still on HRT? If so have you asked how the HRT and Alendronate interact? I haven’t heard whether it is ok to be on HRT and bone meds at the same time. Maybe being on HRT would help the Alendronate work better. But on the other hand they may not complement each other and the Alendronate may not be as effective. I would make sure to check this out.
Sorry, only just seen your last reply. Yes still on HRT. Not ever coming off that due to severe menopause symptoms that forced me to give up my full time job and work part time. Rheumatologist asked if I was on HRT before giving me the AA so guess it’s ok.
I’m not convinced my score is accurate given the high impact falls I’ve had over the last few years with no ill effects and am convinced being petite gives a falsely low reading when actually my bones are ok. Perhaps it’s denial. I’m being aware but carrying on as normal as nothing in what I do has changed since the time between my DEXA and getting the results if that makes sense and had no ill effects.
I am 72 and had been on HRT for more than 10 years when my DEXA scan showed that I had severe osteoporosis and I fractured a vertebra. I have a strong family history of osteoporosis and neither HRT nor the bisphosphonates did anything to improve my T scores. We are all different, but I regret not moving on to the anabolic drugs earlier.
I am newly diagnosed and at 54 am post menopausal. I just asked my clinical pharmacist about taking HRT instead of any other drugs and he said it wouldn’t help osteoporosis as it was more of a preventative measure, and certainly wouldn’t help heal my bones. He is pushing Prolia. I have yet to make a decision.
Thank you for sharing your experience. I’m sorry to hear that HRT and bisphosphanates did not prevent you fracturing. Were you on HRT and bisphosphanates together or one after the other? If when you started them they stopped you losing more bone density I guess that helped but sadly wasn’t enough for you. I hope the anabolics give power to your bones now. But understand it is frustrating knowing that if you went on them sooner they may have prevented you fracturing.
Were you unaware that your spine fracture happened before your scan? I think the difficulty is that we are all different as you say and there is no way of knowing for certain if someone with osteoporosis is going to fracture. The ROS website says that if you have osteoporosis fracturing isn’t inevitable. This must be dependent on how bad your t score is though - the worse your t score the more likely you are to fracture.
Having a family history of osteoporosis may have been a predictor for you but the FRAX only asks about parental hip fractures not other fractures (suggesting other fractures don’t affect your likelihood of fracturing). Which I don’t understand. Maybe it’s because there isn’t evidence from X-rays when people have spine fractures - so they can’t use the studies. But if you know your parents have a spine fracture or osteoporosis surely that would count for your personal risk.
It has crossed my mind that if you don’t fall over and fracture your wrist how do you know how fragile your bones are. I mean if you’re lucky and don’t fall over it could be unlucky because you are not aware how bad your bones are if that makes sense. Of course I’m not suggesting tripping over on purpose to find out but breaking a wrist is a warning sign.
It feels like there is a lot of guesswork with treating Osteoporosis - maybe much more so than other conditions. And this is one of the downsides. I hope one day this will change for all of us. And treatment will become more preventative.
I didn’t go on HRT despite having the menopause from Hell. I was afraid to take it. Now with osteoporosis diagnosed in my 70s from a random DEXA scan, I have been put on topical oestrogen for unrelated symptoms, and take it because I am so ill now I feel I have nothing to lose if I get bad side effects. So far, all effects have been positive. I haven’t had another DEXA to see if the effect on my bones has been positive. My osteoporosis diagnosis was a shock as I had an excellent diet and lifestyle, and had several falls without injury. I have had one infusion for osteoporosis and nothing else. Make of that what you will. As you say, information is scanty.
Do you know why your pharmacist wants you to take Prolia instead of bisphosphanates? I thought bisphosphanates and HRT (according to NOGG guidance - see section 6, no.4 and no.5) were first line. I’m not sure where Prolia fits in but I didn’t think it was good to go on it in your 50’s as I think you have to stay on it for life because of the rebound effect when if you come off. But I think I’ve also heard that if you only go on it a couple of years the rebound effect isn’t that bad. Please do not quote me on any of this as I haven’t looked into Prolia much as it’s not something I’m considering yet. It would be a good idea to speak to the ROS nurses about Prolia and do thorough research on it.
Thanks for your thoughts. He said that my osteoporosis is severe and I need “action” - T scores are spine -1.8, Total hip -2.0, Femoral neck -2.7. I didn’t immediately think severe when I got these readings.
I had a wrist fracture in May, which prompted the DEXA, and I have Orthostatic Tremor, which puts me in the high risk category because of the unsteadiness and balance issues this causes. I don’t want to take Prolia at my age. I will definitely call the nurses.
Your spine t score looks ok. But your hip score is in the osteoporosis range and although it doesn’t look too low I think they see a low hip score as more dangerous than a low spine score (because the consequences I guess). And because you have fractured your wrist this will increase your risk of fracturing again according to FRAX. If you hadn’t fractured your wrist they may not see you as high risk.
Thank you Bex. I agree that there is a lo of guesswork with treating osteoporosis. It has an impact on so may lives and should be taken more seriously. I know that ROS is trying to do that. I was on HRT for at least 10 years before being diagnosed with OP. I broke my upper humerus six years ago but this wasn’t followed up as being due to OP. Finally, two years ago I asked for a DEXA scan because I had been on PPIs for five years and knew that they could affect bone density. OP was diagnosed and I started Alendronate which didn’t suit me and a year ago I had a Zoledronate infusion. The vertebral fracture followed 10 months later. With a strong family history combined with T-3.4 it was clear to me that I needed an anabolic drug, but the family history wasn’t regarded as relevant. I fought hard and was eventually prescribed Teriparatide but I should not have had to fight that battle, and delays were put in place to make it difficult for me to get promptly.
The anabolic drugs are expensive, but they are only taken short term and avoiding fractures and disability makes sense and is probably cheaper in the long term for the NHS and Social care providers.