Osteoporosis

I have had the 6 monthly denosumab for 5 years with no problems. I am due a dexa soon to see if it has worked!

I took alendronic acid for several years, plus daily calcium tablets.

I was taken off the alendronic quite abruptly, think someone realised I had been on it too long (think it’s not meant to be long term.) Still on the calcium tablets.

My last couple of scans showed I was no worse.

TBH, I don’t really think about it (the osteoporosis).

Yes I’m on calcichew and raloxifene, this seems fine to me.

I took Alendronic Acid tablets for 5 years which is a pretty standard time. I now take calcium and vitamin D and ask for a Dexa scan every 3 years or so.
If you look up the Osteoporosis Charity you will find lots of information and help

I'm on CalciD and denosumab injections 6-monthly, no problem so far.
I was glad to stop alendronate tablets because you have to be upright for 30 mins with no food or drink, and I hated missing my morning cuppa!

I take calciD, too.
I quite like them.

Thank you for your replies. I have been reading some posts on here from last year which have been very helpful and I will look on the Osteooporosis web site. Thank you again.

I didn't realise until recently, that osteoporosis itself isn't painful.

It's the affects it has that cause pain.

I have osteoporosis, discovered because I am part of the UK BioBank survey.

I have absolutely no symptoms, bar the low density shown by the dexa test. I have never broken a bone, I am physically active, fit and flexible. Could probably do a summersault if I tried.

I have been prescribed Alendronic Acid, which I take. I do not drink milk, I am mildly lactose intolerant but have always eaten a lot of cheese especially hard cheeses like cheddar.

I decided to boost my calcium consumption by eating 2 babybel lights, those little red wax covered mini edam cheeses that come in nets of 4 or 8, each day - 80 calories and nearly half the recommended daily intake of calcium, in a form that is more absorbable than calcium tablets.

I have now read a lot on the Royal Osteopoŕosis Soc website. Very informative.
What has concerned me now I have had a chance to think about it all is how perfunctory the GP appointment was. It was a surprise diagnosis as the Dexa result on the NHS app said "normal". I had to recontact the surgery to get the Dexa T score which is -2.6. So just out of the osteopenia range and just into the osteoporosis range.
The GP did no fracture risk assessment. Gave me no leaflets. Just asked do I want tablets or an injection. When I said injection he said book yourself for a blood test first...and that was it. Out I went.
I don't know if there will be more advice and discussion when the blood test result is back. I have emailed the ROS with a question and hope they can help. The blood test to check kidney function, vit D and calcium levels is not till 19 Nov so I have some time to get more info.
I have check ups for non hodgkins lymphoma, I have closed angle glaucoma treatment and check ups and am waiting for a hosp appt for a gastric complaint, so I could do without osteoporosis on top. The GP was pleasant. But very vague.

Was on alendronic acid tablets for a few years then noticed my hair thinning ( could have been due to menopause) so stopped taking them.
Was on risedronate acid for 18 months, started having really bad indigestion (ulcer?) so G.P. took me off them straightaway. I hadn’t made the connection!

Now waiting for hospital appointment to start a yearly or by yearly infusion. Side effects seem far less with an infusion.

Helterskelter1 the perfunctoriness seems to be endemic. As I said above, my osteoporosis was discovered during a UK Biobank baseline assessment.

I got a letter from them, then a few months later was given an appointment for another Dexa scan at the local hospital. Then I had a quick telephone call with a doctor telling me they were putting me on Alendronic Acid - and that was it. Thank you and goodbye.

Six months later I was given a physiotherapist's appointment. It was utterly pointless and seemed to consist entirely of rerecording my non-existent symptoms of osteoporosis, other than low bone density, and that was that.

Your treatment is par for the course.

I was dianosed in my early thirties, still receiving treatment at Dexa scans at sixty nine. A familial tendency and long term and prolonged use of steroids was the cause.

I have had multiple stress fractures in my feet and my spine is held together with cement, due to vertebraic fractures.

Calcichew and infusions are now my treatment, I can no longer tolerate Alendronic Acid.

You have done well to reach seventy five!

I was told I have osteoporosis by my GP 8 years ago simply because I had lost height I have not broken a bone in the last 40 years although I ve had a few spectacular falls
I was put on the annual infusion regime Had an infusion annually for three years, two years rest, and now just finished my second three years.
My dexa scan shows 9% improvement in my back but no improvement in hips. My question is, is it worth it ?
I do not have any back or hip pain and I am on my feet 20 hours a week at work, have an allotment, sea swim and as I have no car walk a good bit
I am really questioning whether I should continue with the infusions after this next two year break ?
I have been given little information I didn’t even know you should tell your dentist until I read it on here !!!

Yes my good friend is a retired dentist and she has just had a Dexa scan herself and waiting for the result. She warned me about the possible problems with the jaw. However on a video on the ROS website a consultant talked in depth about possible dental and jaw bone problems with osteo medications and it sounds as though they are very very rare. But always to let your dentist know you are on any form of treatment.
I have booked an appointment with our local osteopath. Who very luckily has a clinic next door to our house. So not far to walk. I have known her for years and know that she will discuss all this in depth with me. I have 2 female friends older than I am with osteoporosis who see her. In the past I have often thought poor friends. Well the boot is on the other foot now!!!
If I get any different or new information from her, I will come back to this thread. There was another very helpful thread in 2023. I recognise the names. I wonder how dollymixture is getting on.

M0nica

I have osteoporosis, discovered because I am part of the UK BioBank survey.

I have absolutely no symptoms, bar the low density shown by the dexa test. I have never broken a bone, I am physically active, fit and flexible. Could probably do a summersault if I tried.

I have been prescribed Alendronic Acid, which I take. I do not drink milk, I am mildly lactose intolerant but have always eaten a lot of cheese especially hard cheeses like cheddar.

I decided to boost my calcium consumption by eating 2 babybel lights, those little red wax covered mini edam cheeses that come in nets of 4 or 8, each day - 80 calories and nearly half the recommended daily intake of calcium, in a form that is more absorbable than calcium tablets.

That's a great tip. I had my scan a few months ago, four of the areas scanned were in the osteopenia range and one just into osteoporosis so I was just told to take vitamin D and make sure I have enough calcium. Like you I don't drink milk so I have been taking calcium tablets as I didn't think I was getting enough calcium but 2 babybel lights sound ideal for me so thank you.

HelterSkelter1

I have now read a lot on the Royal Osteopoŕosis Soc website. Very informative.
What has concerned me now I have had a chance to think about it all is how perfunctory the GP appointment was. It was a surprise diagnosis as the Dexa result on the NHS app said "normal". I had to recontact the surgery to get the Dexa T score which is -2.6. So just out of the osteopenia range and just into the osteoporosis range.
The GP did no fracture risk assessment. Gave me no leaflets. Just asked do I want tablets or an injection. When I said injection he said book yourself for a blood test first...and that was it. Out I went.
I don't know if there will be more advice and discussion when the blood test result is back. I have emailed the ROS with a question and hope they can help. The blood test to check kidney function, vit D and calcium levels is not till 19 Nov so I have some time to get more info.
I have check ups for non hodgkins lymphoma, I have closed angle glaucoma treatment and check ups and am waiting for a hosp appt for a gastric complaint, so I could do without osteoporosis on top. The GP was pleasant. But very vague.

I didn't have any contact with the GP about my results. I got a letter from the Consultant in the osteoporosis department who had read my report and said I didn't need medication, I'm 71 and had a scan 3 years ago which showed osteopenia and she said although I had just gone into osteoporosis on my left hip my change over the 3 years was below average and to take vitamin D.

I think I need to find out which areas are osteoporotic. If that's a word. And which are osteopenic. It can't be the same level all over I think.
I am not going to rush into any treatment. If I hadn't asked for a Dexa I would be none the wiser currently nor in the future. I would have thought that GPs would really on the case as fractures must cost the NHS a fortune.

HelterSkelter1

I think I need to find out which areas are osteoporotic. If that's a word. And which are osteopenic. It can't be the same level all over I think.
I am not going to rush into any treatment. If I hadn't asked for a Dexa I would be none the wiser currently nor in the future. I would have thought that GPs would really on the case as fractures must cost the NHS a fortune.

I got a letter with all the details but I can also see it online if I log on to the app. Might not be the same everywhere but might be worth a look.

Marydoll

I was dianosed in my early thirties, still receiving treatment at Dexa scans at sixty nine. A familial tendency and long term and prolonged use of steroids was the cause.

I have had multiple stress fractures in my feet and my spine is held together with cement, due to vertebraic fractures.

Calcichew and infusions are now my treatment, I can no longer tolerate Alendronic Acid.

You have done well to reach seventy five!

Marydoll I can’t remember why I was given the Alendronate, but see from you that it was probably precautionary, because of the giant dose of steroids I was given during the ‘moonface’ years!

It was easy enough to take, but I’ve decided that eight years is long enough, especially since the promised bone density scan hasn’t appeared yet, so I’ve stopped them, mainly because I have a tooth I want rid of, and the dentist seems to think the Alendronate may cause a problem, though Helterskelter’s post is interesting, and I will have a look at the ROS website.

I had a Dexa scan in my thirties. I had the hip of an eighty year old woman. That was a bit of a shock! I had no symptoms at all. It was my respiratory consultant who decided I needed a scan.

I also have R.A., which is also linked to osteoporosis.

My GP appt for osteopenia was also perfunctory. A GP I’d never seen before or since told me the result of the dexa scan and that alendronate acid was a possibility. I asked it could be managed any other way and he said it could, if I didn’t mind a one-in-ten chance of another fracture within the next ten years. Helpful. Not!

I took the AA for about six years, which put me back within normal range. I also had a dental implant and the possible complications came up while considering that. The orthodontist did some research and concluded that my circumstances meant there was a 7% chance of anything going wrong. I felt that was acceptable and I went ahead.

Both he and my regular dentist said that although there are all these warnings, neither of them had ever seen a case, in 25+ years of practice, which was reassuring.

Recently, out of interest I went on the Royal Ostoporosis Society site and did their questionnaire on my risk of having osteoporosis.

In their words the result was 'Great news! Your answers show you don’t currently have any of the main risk factors for osteoporosis.'........ and I never have had them.

This is no criticism of either the society or its questionnaire. more a warning to people out there who get the same result I get/got. It doesn't mean that you because you seem to be low risk you do not have osteoporosis, because despite being low risk, I have it.

I contacted the Royal Osteoporosis Soc by email with some questions and received some useful information.

The Dexa scan only looks at the lower spine and pelvic hip area. The GP told me I had osteoporosis in my neck, spine and hip. ROS say neck is not the bit near my head but the neck of the femur. They also said it was unusual for the Dexa result I can see on the NHS app to say "Normal No action" when action is required and for me to ask for the full Dexa report which I will do. It's very unlikely but I wondered if the report attached to my GP notes was actually my report.
Its all so vague. I will try and get an appt after my blood test with the GP, female and knows me, who originally referred me.