Osteoporosis support?

[StongerOldBones]

Hi everyone,

A couple of months ago I had a Dexa scan and got diagnosed with osteoporosis. It would be great to connect with other women to talk about osteoporosis - how we manage it, how we can avoid it, what to do about diet, medication and exercise.

I'm 63 years old and I was sent for the Dexa scans after a broken shoulder (nearly a year after!) I was surprised when the scans came back positive because the doctor said it wasn't a typical osteoporosis break. And I've fallen over hard three or four times a few years ago, no bones broken. So it's been a big shock to realise that I'm going to be managing this for the rest of my life.

So far I've been prescribed Alendronic acid each week. I've taken it twice following all the instructions about empty stomach and not eating or drinking anything but water for half an hour. Not had any side effects so far. (My sister gave me a smart bit of advice not to start taking it just before I went away on holiday in case it made me feel ill!)

The GP also prescribed vitamin D but not calcium. I'm trying to keep my calcium intake up - I've started taking a supplement and would appreciate recipe suggestions!

I still work fulltime, in a very sedentary job. I've started trying some of the exercises on the Osteoporosis Society website but it would be great to talk about other women's experience of exercise. Is anyone using a gym, or a personal trainer?

Anyone else like to share experiences or ideas or just chat about osteoporosis?

Could you put down a thick towel or rug and do it in the hall (if their hall is below)?

Good thought @Pifful I do try doing it on the rug (with underlay!) but it's an old building and the floor is creaky. Wearing thick soled trainers instead of just sock feet also helps.

Result of doing osteo exercises - I've just snapped my exercise band! The one the physio gave me when my shoulder started to heal. Probably a good sign, as I get stronger I put more pressure on it. I shall buy a more resistant one.

Another result is that I have gone from barely being able to reach my knees bending from the waist 2 years ago to nearly able to touch my toes! (Yes bending over to toe touch toes isn't one of the exercises but it's nice to know I could nearly do it! I think (hope) it means that my back is stronger.

That's weird — on my DEXA a few years ago, I was told I had "osteopenia of the hip" (a recent document I've seen also said spine was normal, on that scan). The woman who did my new scan on Monday said at the time that my T-score was -0.6, and the letter from my gastro says I have normal bone density. (I'm surprised, because I was under the impression I couldn't get back what was already lost just through better nutrition.)

Does anyone know what it means when they give you only one number for the T-score — is it hip, spine, average of the two, lower of the two, something else? I can't find this info online.

I don’t know about the scores but you can improve your bone density.

I was diagnosed with Osteopenia recently, over the phone by my GP and panicked until I obtained a copy of my results from the surgery and could see my scores. I’ve just got my toe in it at the moment.
I’ve joined a few facebook groups and they are all very knowledgeable and swop info on diet, vitamins, exercise etc.
I am intending to research it all, but off the top of my head is to not take calcium as my diet should have enough in it and excess is bad as it can form deposits.
Take vitamin D with K2 in the morning and take a magnesium supplement later in the day. There are reasons why they should not be taken together.
Walking is obviously good and wearing a weighted vest during the walk is beneficial.
HRT is also beneficial and can be started at any age, my menopause was 10years ago and I’m about to ask my doctor for it for bone health. I wish I’d gone on it years ago.
There are loads of yoga videos on you tube by Suzannah Johnston to target bone density.
There is a lot of mention that the Dexa scans are not that accurate and a REMS scan would be better. Often REMS scans give quite different readings, usually for the better. Nick Birch travels around the UK offering private REMS scans and gives a lot of personal advice on diet and exercise. He has a good reputation.
I would recommend you join the groups and do some research to make your own minds up about it. This one is a very positive group and there are loads more out there. Hope this helps

Here’s two more good sites

Has Anyone had bad side effects from Alendronic Acid? I’ve stopped it for a month or so because I was getting bad headaches and gum and eye infections. Has anyone else had these side effects?

My doctor is sceptical that it’s down to AA but it seems a bit of a coincidence as I’ve had 3 eye infections and 3 gum infections all after starting AA 3 months ago. I also have found that my nails are going white from the cuticle down.

anyone else experienced this?

I've been taking it for 2 years, not had any of those side effects. I have had some gastric problems but they don't seem to be related (caused by vit K2). I'm very reluctant to go to the next level (infusions) because the side effects are said to be greater.
@CatsMother66 No HRT here as I had breast cancer. I did join one of those FB groups but scooted out pretty quickly as they were very anti medicine.
I'm awaiting results of my dexa scan. Hoping things haven’t got worse.

Hi @Petrine I've been taking alendronic acid for a couple of months now and not noticed any side effects so far. That sounds unpleasant.

I am plodding along with the strength exercises three times per week, but not really doing impact exercise. Apart from doing heel-drops waiting at the bus stop in the morning!

Thanks for your replies @StongerOldBones @Pifful

i was expecting gastric problems and I have gastritis but that side of it was OK. The symptoms I have are not common but I’ve read a few medical papers reporting them. I’m a bit concerned as I think that not taking anything isn’t an option.

@Petrine it's a dilemma isn't it. Not least because, unless you break a bone, osteoporosis is symptom free and it's hard to put up with side effects when you feel no benefit.

I have a lot of health conditions and consequently a long list of drugs. I resist all new prescriptions because each drug comes with some side effects which you either tolerate or they offer another drug to counteract. However some drugs are none negotiable based on risk v benefit.
One of the ones I resist is omeprazole. I was prescribed it for gastritis and took it for 3 months after which time I was fine. It flares up again occasionally so I take it as and when. The reason I am reluctant is there is some link to osteoporosis but I haven't found much concrete information.

@Pifful

I know what you mean about taking multiple meds. The problem for me is that I have broken bones. Seven in total. Arms, legs, back, pelvis and ribs, plus finger and toes. It was as a result of accidents so I didn’t associate these with osteoporosis. It was only at the end of last year when I had yet another wrist fracture (the second in the same arm) that my doctor sent me for a DEXA scan. I have a horrible feeling I’m just going to have to put up with the side effects. 😪

I’ve heard that it’s possible to increase bone strength with exercise so am doing yoga and weights each day. I don’t think I dare be too optimistic that this will mean I don’t need meds and I can’t risk another fracture.

Hello, I’m 68, normally pretty fit & healthy but 2 1/2 years ago following a dextra test, I found I had Osteoporosis. Prescribed Alendronic Acid (in yellow box) and calcium tablets to take twice a day.

All has been well until 3 weeks ago when I collected my normal 2 monthly prescription from Boots. The Alendronic Acid tablets were from a different manufacturer in a small box. I thought nothing of it & started to take the tablets each week. For the first week I started to feel tired , but thought nothing of it, 2nd week taking this different tablet to my usual one, I felt nauseous and unwell with a bit of a grinding/rumbling tummy. Having taken the 3rd tablet last Sunday,(25th Feb) on the Monday night I had terrible stomach pains , grinding, and can only describe it as though I’d swallowed a glass of Arsenic….
i phoned my GP surgery and of course, can’t get an appointment. I was in tears on the phone to the “gatekeeper” receptionist.

i phoned a lovely nurse at the Royal Osteporosis Society & she advised me to stop my meds for now until I can see a GP and we went thru my usual diet which seems to give me enough calcium which is reassuring. I’ve been laid low all week. My urine is normally a healthy light sandy colour but since Monday it’s a horrible dark yellow, although noticed a slight improvement this morning.
A GP phoned me yesterday & said he’d put me back on my previous Alendronic Acid tablet (yellow box) but I said after what I’ve been through this week with stomach pain and sleepless nights, I’ll never touch the stuff again!

interestingly, I have been informed that GPs have recently been advised to issue cheaper versions of medications to patients. Is this what has happened to me? A cheaper Alendronic Acid tablet has caused me all this terrible pain and distress?

Hello @MrsBoney That sounds horrible! I have no expertise on this. I take a tablet in a purple box, it's a soluble one and I have to glug it down with loads of water and not eat for half an hour afterwards. I'm sitting here waiting before breakfast!

I wonder if the different formulation is having an effect, suppliers do change and different manufacturers put different "neutral" ingredients in. Real pity that you can't see your GP. I'd have thought Boots would know if your prescription had been changed to a cheaper version though, you could ask the pharmacist?

Due my 3rd AA yearly infusion in a couple of weeks, only had side effects with first one, bit fluey and upset tummy for a few days.
Will have a detailed scan next year to see if things have improved .

Thanks for the replies. As the doctor said he’d put me back on my previous AA, I assume the surgery changed the prescription ( I reorder every 2 months on the NHS app).
I guess I’ll have to move forward with my osteoporosis treatment with the infusion - the doctor who phoned me yesterday mentioned a six monthly one.

@MrsBoney That sounds awful. I wonder what is different in the tablets to cause such a reaction? Mine are in a red box. Those ROS nurses are lovely and very knowledgable.
I had my DEXA scan results last week. First scan was in 2021 and the result was
T score in spine -3.9 and femoral neck -2.9

The scan I had in January shows a slight improvement to
T score -3.6 spine and -1.6 femor.
So the femor has moved up to osteopaenia.
Interesting as the ROS nurse told me that it was impossible to reverse bone loss and the AA would only help to slow it.

I have increased my dietary calcium and reduced the tablets but beware of Vitamin K2 as it caused me dreadful stomach problems.

Little achievements... after months of gradual exercises, for the first time in my life, I can do a press-up from the floor!

Still taking the tablets and still hoping it will help. Love to everyone coping with osteo, hope you're all doing OK.

Hope I'm okay to post on here rather than start my own.

I have a very strong family history of osteoporosis. I had a bone scan a few months ago and have today received my report which has given a Z score. Every where I read it says a T score and Google isn't helping. Does anyone know what the Z score mean.

Thanks

I broke my back in 4 places, was dismissed repeatedly but referred to osteoporosis, so had tablets then annual infusion.

I found something on Google about a Z score, from US govt health web page:

https://www.health.ny.gov/publications/2045/#:~:text=What%20is%20a%20Z%2Dscore,expected%20for%20someone%20your%20age.

"A Z-score compares your bone density to the average values for a person of your same age and gender. A low Z-score (below -2.0) is a warning sign that you have less bone mass (and/or may be losing bone more rapidly) than expected for someone your age. If your Z-score is low, your health care provider may recommend additional tests to better understand why your bone mass is so low or she/he may refer you to an osteoporosis specialist."

So I hope your Z score is good! Did they refer you for more tests or treatment?

Essentially, the Z-Score is the T-score (that of a "young adult") adjusted to reflect your age.

Hi all, I have pregnancy osteoporosis and fractured my spine following having a baby. We have a Facebook page at PAO UK and have shared a video there about how it has affected us all, struggling to be diagnosed and care for our babies etc. I now take osteocare tablets plus at least 2000 extra vit d a day (though regular blood tests will show whether you need more vit D or not), apparently it’s good to aim for 120 to help bones. Also do core and strength training exercises with body weight, bands and free weights, and try to eat more calcium, protein and vegetables etc. also take collagen. I was on teriparatide for a little while but it cost £283 a month plus cost of seeing a consultant as there are no licensed drugs in England for premenopausal women. Another PAO mum I know is 46 and has just been offered hrt to help with her bone density, which has fallen recently after some recovery in it, due to perimenopause symptoms. Another PAO mum struggled for 30 years with heat health after 14 fractures between when she had her baby at 29 until 50. At that point she was very low mentally and physically and in a wheelchair but then she was taken on by specialist bone team at Addenbrooke’s hospital and they got specialist funding to treat her with teriparatide and rosozopram. She is now 62 and has been through the menopause and has the strongest bone density she’s had since before her daughter was born. She now is on her feet and lives an active life again. She is still 5 inches shorter than she was though. As it’s world osteoporosis day, I wanted to share about the condition to help raise awareness. We don’t want any other women to go through what we have. Watch our video here - the song is written by a PAO mum’s husband and sung by a PAO mum.