Bisphosphonates for Osteoporosis

Anyone on bisphosphonates for osteoporosis? I have just been diagnosed and as I have had my ovaries removed I am high risk so bisphosphonates are the answer. Had a bit of a disasterous consultation though - my onc had sent for me to “discuss” bisphosphonates and I saw registra who totally convinced me bisphosphonates were evil and should be delayed as long as possible, then checked with my onc and proceeded to give me script for them! I have checked since with my onc and my GP and both say I should try them and if any adverse effects they will do something about it. Pretty much what I would have said to anyone but I am rethinking that line! I took the first of the evil pills an hour ago. Would appreciate any advice? love Jeanie xx

Hi Jeanie I like you would value any advice I had mastectomy last year but have osteoporosis from taking long term steroids {5 yrs for a rare vascukitis I developed as a side effect {VERY RARE and they wont actually admit it } I developed from taking a at that time new suppodely safe asthma drug I know I have osteoporosis

I am so very frughtened and unsure as I fear any more side effects I was disgnosed last week with a fractured vertebrae after suffering excruciating back pain out the blue

I was x-rayed and bone scanned and x-rayed again TWICE the radiographer had missed a bit amd now must take something but WHAT I phoned osteoporosis help line , nurses very nice they give the info. but then its back to us and I am so relieved its not bone cancer but now will be left with stooped back and serious risk of another fracture
I refused to take the biophosphanates when on steroids and hoped to get away with it
I know you are not on steroids and I dont know your age I am 60
I do hope someone will tell us how they have fared I heard there is a new treatment by injection I also haave diabetes and that fasting
and staying upright for an hour in morning after taking drug is a problem I take 4 insulin injections a day
I read somewhere that there was a risk in animal testing only of bone cancer in animals with one of yearly injections its a minefield and at end of day we are alone well thats how I feel and you never know if what you read is true I am going back to helpline next week to ask that one
Thank you for raising this quesation and good luck
I presume you have had a bone density scan done to see how your bones are now?


You poor thing how awful. I hope you are feeling some improvement and that they help you out.

Yes I had a dexa scan done 18 months ago and they diagnosed a “slight thinning of the spine” and gave me Adcal D3, then I had hysterectomy (Jan 07) and went from tamoxifen and zoladex to exemestane and had repeat scan in Sept 07 and they have now decided that (although no deterioration from last scan on spine with slight deterioration on hip) my spine is osteoporitic. I don’t understand how it can change when it hasn’t changed! I am 43 and was diax with BC almost 5 years ago (I was 38, had mastectomy and chemo 4 X Epi and 4 X CMF. Never had steroids before then but had low BMI until I was about 30 - just naturally skinny). I have to say that this has been almost as big a shock as the BC. I am devastated (have felt really low) and reading your post was so reassuring as you seem to feel the same way (although with the fracture and the possibilities you must have faced you have much better reason). Sometimes I feel silly thinking like this but I am young and I don’t want this crippling disease. Of course I want to live and I am incredibly lucky that they have found this before I break anything. I cannot imagine the pain you must have experienced and the anxiety you must be going through. I really did not want to take bisphosphanates but I don’t feel as though I have a choice because I am not being offered anything else and I cannot really do nothing because of the risk of fracture. What really worries me is the side effects of the bisphosphanates. I may post on here to the “Ask the Nurse” service - have you tried that?iI’s excellent - I had a query on the zoladex once and they got in touch with the drug manufacturer directly and got me advice.You’re right though - we’re on our own kid!

Anyway I’ll stop wittering (need to get ready for Strictly anyway!) - good luck with everything and let’s hope one of these wonderful women has some advice for us.

Best wishes


For Jeanie and figlio

Thanks for posting the suggestion for figlio on the ask the nurse service, you are both also welcome to call our helpline on 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm, our team of specialist nurses can also provide support and information via the telephone, here’s the link to the ‘Ask the Nurse’ service:

Best wishes

Breast Cancer Care

There is a risk of ONJ (osteonecrosis of the jaw) when someone is on bisphosphonates for a prolonged period. There is anecdotal evidence that ONJ has been under-diagnosed, under-reported and hence the risk underestimated for those with bone metastases taking bisphosphonates. This may be the reason why the oncology registrar is concerned.

However, the doses given to protect against osteoporosis are lower than those given for bone metastases so the risk is not as high. Like with so many things, there is no obvious safe answer and you need to balance the risks. We are supposed to give informed consent, so make the medical professionals talk to you properly about this.

Obviously consider the other measures you can take to maintain bone density such as enough calcium and vitamin D in your diet and load bearing exercise.

As you had your ovaries removed, it is fair to assume you are ER+ (oestrogen receptor positive)? This means that many remedies recommended to post menopausal women such as Clary Sage and other rich sources of phytoestrogens are not recommended.

reply to holey bones and Jeanie

Thank you and yes indeed it is a lot worse for you Jeanie to be so young and suffering all this
Do you think this is becoming more common in young women ?I was shocked at ages I saw at clinic
The nurses here are wonderful but it was actually osteoporosis help line I went to as they specialize in bones and know more than drs
Te help line number is08451303076 you can also mail them on the osteoporosis uk site
The thing we have in common is I eas very eostrogen positive but was not given tamoxifen because of all my other medical conditions
I am going to insist on seeing someone ?endocrinoligist I think who specialises in this as I am especially wary of side effects well fear is word after what I got with a SAFE drug for asthma
THE ONJ mentioned above is another fear
I will let you know if I get clear informatioin