Anyone got any advice about osteoporosis?

I wouldn’t worry too much I was diagnosed about four/ five years ago I ve also lost 3 plus inches but not any weight
I have had 3 or 4 falls since and not broken anything
I have had four annual infusions as I can’t take the alendronic tablets and it’s made a few percent degrees difference to my bone density but not a whole lot
I really don’t think about it and I do everything and more than what a lot my age do in the way of manual work I lift and move quite a lot of loads at work and have a garden and an allotment I go all year round sea swimming and otherwise potter around and fall asleep when I m not working 😂😂( I m 78 )
Don’t dwell on it at all and take it in your stride it could be a lot worse

I was diagnosed with this abiut 6 months ago. It came completely out of the blue and was found by chance.

I have no symptoms, beyond slightly more than the usually loss of height with age and I have never broken a bone and I have a weak ankle which I go over on it and quite often end up flat on my face. I taught myself to fall safely years ago, but as I said, I have never broken a bone

Since my diagnosis like Bluebelle, I have been continuing to do the things I have always done, climbing ladders pruning the wisteria and painting the outside of the house and standing on step stools and library stools to reach to the tops of cupboards

No one has given me any advice of any kind beyond advising me to take a Vitamin D supplement, which I already did.

Personally, I would avoid calcium supplements they are not absorbed half as well as calcium in food. I now supplement my calcium by snacking on 2 low fat mini Baby bel cheeses each day. Each contains only about 40 calories and contains 20 % of the recommended daily requirement for calcium. Two of them are well under 100 calories nd give you 20% ofthe recommended daily calcium intake.

I've had it for ages. I take Vit D and calcium every day and am on 6 monthly infections of denosumab. I have no idea if it is working as they have told me the results don't show up till after 5 years! Feels like a long time to be taking something without knowing whether it is working and being able to have something different if not ......

As above just carry on as before, calcium and vitamin D are usually prescribed and Alendronic acid tablets. You should probably give them a try if advised and see how you go. The Royal Osteoporosis Society are helpful with an email and telephone service along with useful advice. All the best.

You need to take calcium and vitamin D in a combined tablet. Can't remember which way it is but you need the calcium to absorb the vitamin D or the other way wrong. I take a calcium,vitamin D and K combined tablet . Plus I take a folic acid ,cod liver oil, vitamin C and vitamin B12 tablet one of each. Help with my bones and joints .

Thanks ladies. It’s a shock when you blithely assume you’re perfectly fine, isn’t it? I take so many prescribed tablets anyway that the thought of more just makes me blanche. I can go to the GP for 3-4 weeks so we’ll have to see then. Thanks for the reassurance.

Well when we get to my age (I don’t know about yours) you are going to have to expect things to wear out and I doubt any of us are ‘perfectly fine’
I was very shocked to get a cancer diagnosis early this year out of the blue but how lucky a vigilant doctor sent me for more intense hospital tests it’s was very early stages and been dealt with and I ve taken it in my stride

I have had it for nearly forty years, lots of stress fractures and two spinal fractures, held together with cement.
I have been on medication all that time, but I don't retain Vit D, which doesn't help.
After intolerance to Alendronic acid tablets over the years, I now have annual infusions.
However, I'm still going strong, despite multiple comorbidites. It must have been a shock to you, but as others have said, don't dwell on it. Life goes on and osteoporosis is actually the least of my worries .

My DH, who lives in France, has osteoporosis which is unusual in men. It has caused two of his vertebrae to disintegrate. He has Vitamin D supplements and an annual alendronic acid infusion.

Investigations discovered that one of his parathyroids is preventing him from absorbing calcium. Nodules from there were removed under GA last month, initially thought to be non cancerous. In depth analysis discovered some micro carcinoma cells which will be monitored. He isn’t unduly worried since his surgeon was reassuring.

It’s a condition that many people live with so try not to worry, Dollymixtures. My DH received the same advice regarding the danger of falls but he is still able to undertake normal activities although he wears a brace to support his back if lifting heavy items.

Royal osteoporosis society helpline is amazing. Also ask for referral to a rheumatologist. Bit d and calcium won’t help osteoporosis. You probably need treatment. I had 2 zolendronic acid infusions but they didn’t help so I’m now on denodomab injections. I’ve had 3 fractures in the last year-none associated with injuries so please don’t just “carry on as normal”. Get professional advice

Just pass up on calcium carbonate! The body does not absorb this kind of calcium very well and I don't know why they still sell it. Calcium citrate is good and other kinds of calcium are good. Vitamin D and magnesium helps with absorption. I have had cancer twice so the osteopenia set in kind of early I'm 72 and I've got osteoporosis in some places now. Weight bearing exercise really helps and that would be walking not bicycling. If you can run, even better.

My doctor (since retired) sent me to an endocrinologist consultant in 2019 as my calcium levels were up slightly and she suspected a parathyroid adenoma. The consultant was happy to leave me for about a year. Covid was around then too. He sent me for a bone scan which showed I have osteoporosis. I'm 71 and I had no idea. Told the usual, to be careful when walking as we enjoy walks, don't slip etc. I have carried on as normal, I do take the prescribed Alendronic Acid and Vit D. I was told that I would have another bone scan in December this year but who knows? As for the parathyroid being removed, I'm still waiting. I've had a CT scan, a CT scan with contrast and an ultrasound. After those I had four telephone appointments cancelled and new dates given. I was then asked if I would like to go ahead with the operation, I said yes. I have been referred to a general surgeon, my first appointment with him I couldn't attend as I had covid. I was given a new date, this morning I received a letter cancelling that appointment, have been given a new date of January 11th 2024! On we go......🙂

I was diagnosed with osteoporosis a few years ago, I was prescribed vitamin D and Calcium tablets amongst other things. I found that the calcium tables made me very nauseous and had to stop taking them, I do still take the vitamin D though. Some people have no ill effects from calcium tablets but I just ensure that I consume calcium in other ways.

I was diagnosed years ago and took alendronic acid for a few years but it didn't suit me, so I was then given Strontium Ranelate. I decided that I didn't want to take any more drugs (they hadn't worked for my mum) so I bought a vibration plate and use that most days. There is little research into non drug treatment and that's a shame. I garden, but can't walk far as Covid has left me feeling breathless after 12 minutes fast walking. I feel fit and haven't fallen for years (I'm 72) so don't know what will happen if I do. It doesn't keep me awake at night. I take vitamin d and magnesium.

Diagnosed about 12 years ago still taking the calcium tablets with added vitamin d and they taste fine. Was on alendronic acid for 5 years then they stop it as that’s the limit for it being of use. Carry on with life. I had a fall and it was a very bad break so was tested earlier than usual. Perhaps take it a bit steadier but just carry on.

You must join The Royal Osteoporosis Society (ROS), they are superb in talking through everything to do with OP.
THIS IS MY STORY.
I was ‘diagnosed’ with Osteoporosis score -T4 via DEXA scan, having fractured my wrist, nearly 2 years’ ago. Toddled off to GP who put me on Alendronic Acid + vitamin D/calcium. There was no in-depth discussion with GP only to say I have bad OP and mind you don’t fall, goodbye - no kidding. I came away shocked and in tears.
After 12 months of being on this medication, I developed dizziness and a bloated stomach which was very painful.
I spoke with ROS nurses who advised to stop taking AA and, with such a high score of -T4, was I under a Consultant as I should have been.
I got a GP referral but it was going to be 15-18 month wait for an NHS appointment, so, I went private.
Saw a Consultant and after him collating all my results he said
“You haven’t got Osteoporosis but you do have Osteopenia.” So between the dexa scan reporter and the GP they decided I had OP. Neither had obviously not looked at all dexa scan results in-depth. It turned out that the reading of -T4 was just my forearm and not my spine and pelvis. I was elated to say the least.
My advice is to please, please join ROS and talk any worries you have through with them and join any talks or zoom meeting you have in your area.
Best wishes to OP suffers.

Dollymixtures

I’ve just been today for a bone scan and I’ve definitely got osteoporosis. I had no idea obviously, it was just advised by a doctor as a general thing. I’ve lost over three inches in height and I’m suddenly a stone less than I was as well! I’ve got to be careful walking about in slippy conditions and don’t stand on stools etc in the house! Frightens you to death, seeing as I hadn’t the faintest till this afternoon!

On this same doctor’s advice I’ve started taking vitamin D each day but I’m told my GP will probably give me calcium as well and maybe another medicine as well. Anyone with a similar story?

Sorry to hear this, it does come as a horrible shock especially when one has been active. I was diagnosed with severe osteoporosis 9 years ago and of course they immediately tried to push AA on me but I had already done my research and no way would i risk that. All that bisphosphonates do is harden old bone so initially it appears there is an improvement on a scan but this eventually results in brittle bone which can snap at any time.

Also avoid Adcal as the calcium is basically chalk. I would firstly get all the relevant blood tests done if you havent already been offered, particularly primary hyperparathryoidism, I was left with that for 5 years thanks to the good old NHS as my three monthly results were "above the normal range, to be expected"!!!! I eventually found probably the best surgeon in London and had to pay out over £11k three days before lockdown to have a private operation where he found and removed three faulty glands (we have four). Phpt is the third most common endocrine disease and yet it is totally ignored. The surgeon said he felt I was too old (then 73) for there to be any regain in lost bone density, but hoped that the operation would at least slow the osteoporosis down.

My advice to you, once you have found there are no underlying causes, to have as healthier diet as possible, make sure you take magesium, one of the forgotten minerals which is essential for good bone health and keep your vitamin D up and Vitamin K2.

There are other reasons for osteoporosis like hereditary and one of the biggest offenders are PPI's for acid reflux, so many drugs can cause it.

I would never entertain bisphosonate infusions but that is your choice but THE MOST IMPORTANT THING IS avoid a lethal six monthly injection Denosumab (Prolia). The FDA gave out a warning about this drug in January 2017 and sadly the UK trailed behind in May 2020. I was lucky as my rheumatologist I saw in January knew of the risks and said no. It is a lifetime drug and if you leave it off, then there can be diar consequences. Sadly Gp's and rheumatologists are still ignorant about this drug. If it is left off, then bisphosphonates have to be taken to try and avoid fractures.

www.gov.uk/drug-safety-update/denosumab-60mg-prolia-increased-risk-of-multiple-vertebral-fractures-after-stopping-or-delaying-ongoing-treatment

I purchased a LivMd vibrating plate which is specifically made for osteoporosis and was devised in conjunction with NASA as it was found that astronauts were losing bone density whilst in space. Walking (weight bearing is essential).

Depending how bad your osteoporosis is, you should avoid bending from the waist or doing a twisting movement.

As many DEXA technicians make mistakes, people are now tending to use a better and more accurate measuring device known as REMS which is private. Many on our group have actually been found to have osteopenia and not osteoporosis so all that stress for nothing. Unfortunately there are only two places so far in the UK, one in the London area (Amersham) called Profortis and another mobile service run by a retired orthopaedic surgeon called Osteoscan.

You need both calcium and Vitamin D taken together otherwise your body will not absorb the calcium.

Look up in a good cookery book or google which foodstuffs contain calcium and whether any contain vitamin D, which we get mainly from sunlight. (precious little chance of that at this time of year.)

Save your worn out socks, tights or stockings. Pull on a pair on the outside of your shoes if the weather makes paths and pavements slippy. The cloth gives better purchase on slippy surfaces.

Avoid manhole covers, as the metal is dreadfully slippery at the least touch of frost and walk with a stick in bad weather conditions. If you do slide or slip, the stick ought to help you not to fall and it signals to others using the pavements that they should pass you carefully and to motorists that you can't just nip quickly across a road.

Now is the time to make sure that there are no trailing electric flexes crossing your floors at home, and no carpets or rugs with edges that have turned up, nor any rugs that slip on the floors when you step on the rug. Either take them up or buy the rubber matting specially made to prevent rugs slithering around.

If you have outdoor steps up to your house doors or garden gates, have hand-rails put up and use them. The same applies to getting in an out of a bath tub if you have one, and buy a non-slip rubber bath mat for the bottom of the bath or shower cubicle.

Regarding falls - prevention is assuredly better than a cure, so make sure your glasses are the right strength too, so you don't fall over objects because you did not see them, and train the cat and dog not to dither around in front of you when you are walking up and down stairs! The word MOVE said loudly will get the cat out of your way, so will shoving her gently with your foot.

I think you need Vitamin D with Vitamin K (Boots do tablets with both) as K helps your body access D. Also, if you are at the stage of the menopause, HRT helps your bones stay healthy.
Someone else will know better than me about this next suggestion - but I think I've read that exercise helps bone strength, though of course you'd be cautious not to fall. I hope you find a good relaxing way ahead

Surely if you have been diagnosed with osteopenia or osteoporosis, you would be under medical supervision?
Why would you self medicate, by buying over the counter meds?

Take HRT and stay on it as long as you can into your seventies! That protects your bones . Joanna Lumley swears by it

HRT is not suitable for everyone, unfortunately.

I’ve had it years , mid 40 when diagnosed. About to start daily injections. Can’t take anything else, severe side effects. Alendronic acid and calcium chews help form bone . Both things are important, lots don’t take the calcium chews. I’ve got friends that have healthy bones now due to that treatment. Vitamin d levels are important, you need to load to get them up . Doctors or nurses can advise. Multiple breaks are dreadful but informing yourself makes it more achievable. Good luck.

I was diagnosed bout a year ago after a broken bone. I can't take the alendronic tablets but do take Vit D/C tablets - taste like chalk. I do more exercise - cardio and walking and have more yoghurt/ cheese, etc. I haven't lost height or weight.