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(18 Posts)
YJPA Mon 23-Sep-19 17:42:01

Hi everyone,

I am 51 years old and have just been diagnosed with osteoporosis. My T score is -3.5 (don't know what my Z score is yet, I will be asking for it). I have never had a fracture but I am post-menopausal. Dr wants to treat this with bisphosphonates but the side effects are pretty scary. I have asked if I can speak to a specialist about my options and I am being referred back to the osteoporosis clinic that carried out my DEXA scan.

In the meantime, my question is, has anyone had experience of treating their osteoporosis (with similar T score as mine) with right diet and exercise but without drugs, and has it proved successful?

I know that each person is different and what may work for one person may not work in the same way for another. At this stage I am just gathering information and weighing up my options before I make a decision on which way to go.

I am planning on hiring a personal trainer and a dietician to make sure I am doing everything correctly. I haven't decided on whether to take the drugs yet or not. I will wait until I can speak to the osteoporosis clinic where hopefully they can give me more information on what might be the right drug for me. I am also planning to speak to one of the nurses on the helpline at the Royal Osteoporosis Society for more information.

OP’s posts: |
Charley50 Mon 23-Sep-19 17:50:23

Do you take any supplants? I have or osteoarthritis (i know that's different but hope this helps), and had so much pain when walking, and lying down. Had to give up my sport. I started taking menopause-type supplements and the pain is minimal now. I can do my sport again too.

Deecaff Mon 23-Sep-19 21:54:38

Sorry to hear that YJ. Hopefully someone with direct experience will see the thread.

Can I ask what menopause type supplements you take, Charley? I have osteoarthritis also and it's limited what I can do.

venezia222 Tue 24-Sep-19 07:31:53

I have it. I’m wrists and a bit in hip. I took the biphosonates for 3 years. Hated them. Doc was not keen for me to stop but sought a second opinion and came off them.

I improved my scores by diet and exercise. Though recent,y had a knee fracture! Unrelated to the Osteoporosis I think but I expect they will want me back on them.

They are scary drugs so I uunderstand your concern. Maybe get a second opinion?

Charley50 Tue 24-Sep-19 08:06:49

@Deecaff - I think I get the jointcare one from osteocare. Just noticed they're on offer at Superdrug.
I take one, not the recommended two, and it's made such a difference. Almost immediately too. I was resigned to some degree of pain before that. (Other thing that helps is only wearing trainers!)

Incidentally, NHS now recommends that everyone takes vitamin D in autumn / winter now, as so many people are vitamin D deficient.

Deecaff Tue 24-Sep-19 08:51:01

Thanks Charley I will look into that. I do take Vit D.
I think you're right about trainers - I wear them a fair bit too, when not at work.
Does your sport involve any running? I'd love to get back to playing a gentle game of badminton .

YJPA Thu 26-Sep-19 10:01:45

@Charley50 Thanks for responding. I've only just started on Calcichew prescribed by the GP. It's calcium and vitamin D, although I am waiting to have a blood test to see what my levels are, as you don't want to overdose on the calcium - apparently you can get kidney stones.

I have contacted a nutritionist I used to see some years back for something else and she has recommended Osteo-P-Complex - they have a lot of vitamins/minerals that are all required to assist bone health. I have learned that Calcium and Vitamin D alone are not enough. I have an appointment to see her in October for a face to face consultation.

@Deecaff - Thank you for responding. I hope you find something to help with your osteoarthritis.

@venezia222 - Thank you for your response. I have sent you a private message.

OP’s posts: |
Charley50 Thu 26-Sep-19 10:53:36

@YJPA - yes there are other minerals that help connective tissue etc. that we need tiny amounts of. I always thought supplements were a con, but it seems they're not!

@Deecaff - what shoes do you wear for work? I wear trainers for work too. I do think workplaces can't expect women to wear uncomfortable shoes anymore, but i suppose it's also about how you like to present yourself.

Deecaff Thu 26-Sep-19 20:33:27

I wear flat shoes at work which are ok as there's not much walking involved. To be fair I think they'd be ok with me wearing trainers if I wanted to.

Diamond25 Sun 29-Sep-19 03:01:54

I am 49 but have had anorexia so I have osteoporosis diagnosed 7 years ago. I have an injection called Prolia as I can’t tolerate any other medications. The other medications burnt my chest & made me cough. I also take calcium & vitamin D high strength twice a day.

OneHanded Sun 29-Sep-19 03:27:21

I have it severely in mid twenties so they don’t use biphosphates as can cause infertility, I fall a lot as I’m very clumsy and tend to throw myself about a lot anyway! Several fractures later still going as I’ve gotten used to it and tend not to visit doctors!

OhTheRoses Mon 30-Sep-19 09:46:05

Hello OP. I have osteoporosis diagnosed four years ago after a low impact fracture when I was 54. I took the view that I had a long life ahead of me and wanted to maximise my bone strength. I was started on oral bisphosphonates and they caused no problems. I then had another fall and badly wedge fractured my L1 and was referred to a consultant neurologist who recommended I should be referred to a consultant rheumatologist to ensure I received optimum treatment. I also started specialist pilates with a physiotherapist.

I didn't think I could turn it round just with diet and exercise - both excellent to help maintain bone mass but won't restore it. The rheumatologist suggested three annual infusions of zolendronate (which feels less of a fag than a weekly bisphosphonate). After three infusions my bone density scores had returned to normal and on the advice of the rheumatoligist I am now having another three infusions spaced at 18 month intervals.

I looked at the risks and side effects carefully and concluded that the benefits far outweighed the risks. I also noted that the really severe and catastrophic side effects are as rare as winning the lottery and tend to occur in people who are very very ill to begin with.

My view is that when diagnosed young and I have a full time job and very busy life, then a two pronged approach of bisphosphonates and lifestyle were best to maximise future health.

The vertebral fracture was v painful and scary but I recovered well and quickly. Pilates helped hugely and I rush less than I did and have stopped tripping as a result.

Hope all goes well for you op and thanks to those above who have provided tips for osteo arthritis supplements because I am developing that too - runs in family.

YJPA Mon 28-Oct-19 09:57:22

Thank you to all who responded and apologies for my late response!

Have you been on medication for 7 years?
Do you remember what your T score was when first diagnosed?
Do you know what your T score is now?

I’m sorry that you have this at such a young age.
Do you know what your T Score is?
Are you taking any other type of treatment instead of the bisphosphonates?

Thank you for your detailed response of your own experience and how you approached the decision for your treatment.
Which area was the osteoporosis worse in?
Do you remember what your T Score was, and what it was after the initial 3 infusions?

OP’s posts: |
OhTheRoses Mon 28-Oct-19 10:01:03

I dont remember the score exactly. It was worse in my spine than hip. Both were established osteoporosis. After three sessions both were normal so the treatment worked.

Diamond25 Mon 28-Oct-19 10:59:12

I have taken it for 3 years then I had a break as my levels had improved. I don’t know what my scores are..I had a scan in March but my levels have gone down so I am re starting it. I have to get a private prescription in Australia & it costs $320 every 6 months.

OneHanded Mon 28-Oct-19 11:27:52

Sorry I also can’t remember my t score! I think likewise my spine was worst though, and that’s where I’ve had known fractures too so would follow with that. I have a feeling it was around -5.4 BUT don’t hold me to that!
The only medication was a strong calcium and vit d but they stopped that after a few years. I hope you’re keeping well OP and have had time to process everything now flowers

YJPA Mon 28-Oct-19 11:29:36

@OhTheRoses - I'm glad the treatment worked for you.

@Diamond25 - It's a shame the treatment doesn't last and you have to go back to it.

OP’s posts: |
YJPA Thu 31-Oct-19 13:31:20

@OneHanded - Thanks for your reply. Do you know why they stopped the calcium and Vit D with you after a few years?
I'm still finding it difficult to process it all tbh. I'm grateful to you guys for your experiences as I find it is good to speak with people who have first hand experience of something.
I still haven't decided whether to take the drugs, but I have started taking a bone supplement by Nutri Advanced called Osteo P Complex. These were recommended by a nutritionist/health advisor and has seen good results in others who have taken them. I have also started pilates once a week and will start going to the gym for weight training and strengthening exercises.

OP’s posts: |

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