Are AA medicine really necessary for Osteoporosis stage 4?

[Verauk]

I´m 68 years old and I had a total histerectomy 30 years ago, so I became a menopause at age 39. I did not take estrogen or any other homonal reposition. I have healty habits ( feeding, exercices, no smoking , no alcohol). I´m a very active person and I dont have any other disease.

Recently I receive my diagnostic of Osteoporosis -3,0 in my spine.

Doctor have prescripted Risedronate. I´m afraid to start taking it due side efects. Does anyone can give me your experience in similar conditions?

I´m afraid also if I dont take the medicine, my spine start do hanchback.

Thank you for any advise or share of experience

[Met00]

I was diagnosed at age 58, spine -3.2, hip -2.3. However, some years later I discovered an error with the spine result, so at 58 I probably didn't have osteoporosis, just osteopenia (though I do have it now). Nearly 10 years later I don't take meds and have been living a healthy and active life. So a diagnosis of osteoporosis doesn't necessarily mean a lot. DEXA scans estimate bone density, not bone strength, and errors are common. You need to know all your t-scores, not just the spine, and your FRAX fracture risk (based on your neck of femur score and a number of other risk factors, including any fragility fractures). Any recommendation for medication should be guided by this FRAX s ore, not on your spine t-score. Ultimately it's your decision whether or not to take the meds, but bear in mind that if you're doing plenty of weight-bearing exercise your bones may well be strong.

[Verauk in reply to Met00]

I'm not an specialist but I have the feeling that my DEXA is not correct. I will try to see a bone spcialist and ask a FRAX ore. Thanks

[SusanEleven]

I had a surgical menopause around age 40 due to a uterine cancer diagnosis. (I’m 68 now.) No original equipment: they took my ovaries, uterus, tubes and cervix. But I was a complete surgical cure. I did use estrogen-only patches for a long time, finally stopping in 2015. I’ve never had good bone density but didn’t progress to osteoporosis until this year. Fosamax was pushed at me starting in the late 1990s if I remember correctly, when I didn’t have osteoporosis and the pressure to start the drug really put me off. My endocrinologist is pushing now but I’m still unsure. I had a fracture decades ago from an accident and it has stayed stable. I have a rare autoimmune Vasculitis so honestly my focus is on that.

[Verauk in reply to SusanEleven]

Susan thanks to share your experience that is very similar to mine except for the estrogen patches that I did not take. I´m very afraid of the side efects of Fosamax or other. Did you have any references of women that are taking and wich are the side effects? Have a nice day and thanks again

[Margo]

I would recommend seeing a Nutritionist if you can afford it. Other than that get yourself on a good regime of supplements for bones K2, D3, Magnesium. I am the same age as yourself had all that you had and turned myself around with diet/supplements. I feel great now and never taken any medications.

[Verauk in reply to Margo]

I´m so gratefull to all of you that are sharing your experience with me. I´m very shocked with my actual bone score situation and I hate to take medicines. As I told before I live a very health life and I´m afraid to damage my health. Thaks Margo.

[TandemTime in reply to Margo]

Just a small point as I agree.. but a dietician would be better as in the UK they are HPC registered with a 3 year degree of knowledge, anyone call themselves a nutritionist..

[Nuttyshirlz]

hi I was given a full surgical hysterectomy age 23 never advised to take vitamins of any kind so carried on life. Had my first Dext few weeks ago results came back my spine is fine it’s my hips and knees for me are worse than should be for my age 59 on vit Ds and I’ve osteoporosis along with arthritis. As I got older I thought vitamins were something that ppl had money to waste took though got plenty with the food I ate. Think they should talk about the importance of vitamins at school when they teaching them about about their health.

[Verauk in reply to Nuttyshirlz]

Nuttyshirlz thanks to your comments. Did you discuss with your GP about side effects of the osteoporosis drugs?

[ROSModerator Partner]

Hi @Verauk,

We would like to wish you a warm welcome to our community. We appreciate that receiving a diagnosis of Osteoporosis can be really difficult, and fill us with worry and confusion about what to do next. As you mentioned feeling unsure about medication, we just wanted to drop in to let you know that we have lots of information about Osteoporosis drug treatments on our website, see: theros.org.uk/information-a...

Including sessions about side effects:

youtu.be/qUFb12hd9c0(Not working as expected?)

We really hope our community helps you with your journey.

Wishing you all the best,

ROS Moderator

[Verauk in reply to ROSModerator]

Thanks a lot to everybody. I´m feeling better to see we can share experiences here. Thanks again

[Mavary]

sorry to say this but at minus 3 you do need to take something. It may be that you can build your bones up enough to come off them for a while. You don’t want to be like me. My first Dexa scan was minus 5.5. It has improved a bit and was minus 4.6 for my last Dexa scan. I have had seven spinal fractures a broken foot and a broken hand because of weak bones. It’s up to you but knowing what I know and being now disabled I would definitely take advice.

[Verauk in reply to Mavary]

Thanks Mavary. Could you tell us wich side effects did you have with the medicine ?

[Mavary in reply to Verauk]

I first went on Terraparatide then Denosumab which I’ve been on for about four years now. I had no side effects with either medication. The best people you can speak to is the ROS. The Osteoporosis nurses. They are very knowledgable.

[Verauk in reply to Mavary]

Is Denosumab the one we can't stop taking it never?

[HeronNS in reply to Verauk]

It is the one which is implicated in rebound osteoporosis if it is stopped. People are advised to immediately start another bone med if they must discontinue it. I don't think it's the only med which requires follow-up treatment afterwards to maintain any gains. I understand teriparatide, for example, needs medication to maintain gains.

It's the older meds, the bisphosphonates, which stay in the bones indefinitely.

Don't know what the story is on Evenity which is relatively new and comes with a black box warning about risk of cardiac problems, but as it is brought to us by the folks who brought us Prolia (denosumab) I'd do even more research than usual before agreeing to take it.

[Mavary in reply to Verauk]

I’m on it for life as my bones were so bad. I don’t see a problem with that.

[Verauk in reply to Mavary]

Thanks. I feel better now. I was so worried to take those medicines. But luckly you people have answer me. Nice weekend to all

[Mavary in reply to Verauk]

Yes although some have come off it but you have to go straight away on something else. I’m quite happy to stay on it.

[Verauk in reply to Mavary]

when my doctor talkes to me about my last Dexa, I couldnt belive it was happening with me, due my healthy life stile. I love outdoor and nature and animals and walk etc.... I need to have it to be happy. Talking with you here, I feel much better now and I see that I can have life quality in the future. I will start with risesedronate and see if it will works for me in terms of side effects. Thanks Mavary.

[Mavary in reply to Verauk]

well done. If you are unsure at all ring the Osteoporosis nurses. I think you are doing the right thing. Not all medications agree with everyone but unless you try them you will never know.

[HeronNS in reply to Verauk]

Sorry I didn't see this comment of yours before. Has your doctor tested you for "secondary causes of osteoporosis?" No point taking a bone medication if there is something going on with you which will prevent it from working properly, like parathyroid issues.

osteoporosis.ca/medical-con...

[Verauk in reply to HeronNS]

In my case no other"secondary causes of osteoporosis" except that my last DEXA ( May 2024) shows a T score for my spine of -3.1. I have 68 years old and I have a very health life( exercises as swiming and lots of walking, good food ). I have a feeling that this drugs will damage my body. But my Doc says that is necessary to avoid bone break.

[HeronNS in reply to Verauk]

Well that's why I said I hoped you'd had all the right blood tests as you have been living a healthy active life. If there really are none of these other factors, it is possible you could improve your bone density without taking medication, simply by taking a few judicious supplements and maybe adding a bit more weight-bearing exercise. Forgive me if I've already sent this to you, but you might find interesting tips in my story. Also, over the years I've been in touch with a few people with low bone density who have managed to do the same, improve their bone density without medication. Of course this is a choice you and you alone can make. Good luck! 🍀

healthunlocked.com/pmrgcauk...

[Verauk in reply to HeronNS]

Thanks to you HeronNS, also. I'm considering all the informations I got here in this health net, that are very consistent. I was supposed to take my second dose of Risedronate in one week, but I will wait until I have discuss all this with my doctor. 🌸

[Met00 in reply to Verauk]

Having low bone density and poor bone strength aren't necessarily the same thing. One t-score of -3.1 isn't enough to go on. Do you know your other t-scores? They should have calculated a FRAX fracture risk score, based on your neck of femur score, and it's the FRAX score that should be used to determine whether or not you need medication, not just one t-score.

[Verauk in reply to Met00]

Met00 thanks to take time to answer me. I thank you so much for that. Regarding the questions you´ve made about Other T scores, what you mean? are refered to other parts instead of spine ( femur for ex)? Femur neck is -1,9 and BMD 0,779g/cm3. And spine ( L2-L4) -3,2 ( BMD 0,818g/cm3).

[Met00 in reply to Verauk]

Yes, that's what I meant. Your neck of femur is only -1.9, which is within the osteopenia range, and that's the score that should have been used, along with other risk factors (eg previous fractures, certain medications) to determine your fracture risk (eg 10% risk of fracture in the next 10 years). If you're in the UK, FRAX should have been used to calculate this (see frax.shef.ac.uk/frax/ ). You can use the calculator yourself, but make sure you select the correct country from the drop-down list on the calculation tool link at the top of the page. There's also a private scan available in the UK that measures bone strength as well as density. Unfortunately it isn't officially recognised by the NHS, but some doctors are happy to accept it. It's called a REMS scan, uses ultrasound rather than x-ray, and is more reliable than DEXA because it's more fully automated. If you're interested, their website is osteoscanuk.com. It's not cheap, but you do get a 1/2 hour consultation with a highly regarded orthopaedic consultant, who will do the scan then discuss the results with you, together with looking at lifestyle factors and whether there's anything further you can do to help your bones.

[Verauk in reply to Met00]

Met00 I want to say that you have helped me a lot. I will consider all your advises and try to discuss about these other tests you've mentioned as REMS scan. Thanks again and I wish you all be best.🌸

[strongmouse]

Hello, just to reassure you that as with any medication there can be side effects, but not everyone has them. I was prescribed Alendronic Acid tablets at first but was unable to tolerate them as they caused me a lot of stomach problems and made the reflux, which I have, worse. The Consultant then agreed for me to have yearly infusions of Zolendronic Acid which I started five years ago. The only side effects I've had are a couple of days feeling as though I've got 'flu. I'm 72yrs old, had a hysterectomy at 45yrs, was then on HRT for ten years.

I chose to have it as my mother had severe osteoporosis, lost two inches in height, and she died after breaking her hip (in her 80s). She walked everyday and ate well. I have ME which means I can't exercise much and have a lot of food allergies which effect my diet. Consequently the balance of the benefits versus the risks meant it is worth me taking this medication which slows down the loss of bone density. I'm due to have my next infusion in a few weeks time and quite happy about it.

Hope that you are able to make the best informed decision for yourself.

[Verauk in reply to strongmouse]

Strongmouse thanks again for sharing all that with me. Great value for me to know case histories of real people not just medicine leaflet. Please if you dont mind one more question: this flu symptoms makes you be in bed or just a disconfort? My best regards for you.

[strongmouse in reply to Verauk]

I often have a rest in the afternoons because of other health conditions. It's not completely disabling, but I wouldn't want to be arranging to go out anywhere the two days following having it. But I've heard of others who have very mild symptoms.

[Fruitandnutcase]

You never know, you might not have any side effects. I did but I know a lot of people who take bisphosphonates and have absolutely no side effects, most of them have had infusions. If you do go for infusions it appears to help if you drink loads of water before, during and after the infusion.

[Verauk in reply to Fruitandnutcase]

Thank you Fruitandnutcase.

[Numptybrain]

I had a hysterectomy at 29 had HRT patches for a short while until doctors deemed them a risk for me. I was diagnosed with osteoporosis 2 years ago I’m now 61 and take allendronic acid which I don’t have any side effects from, I also have osteoarthritis of the spine and most of my joints, hands, wrists knees, shoulders, hips etc. It’s a very painful disabling condition, I have other issues going on medically too. But as far as allendronic acid, I’ve already had a few rib fractures and L5/S1 bilateral fractures which have been fused and repaired. It’s up to the individual but fractures are extremely painful and debilitating also they can leave you disabled so you really do need to weigh up the pros and cons.

Take care

Wendy xx

[Verauk in reply to Numptybrain]

Thanks Wendy for your Kind response. Enjoy your saturaday🌳🍄🌼