Osteoporosis Complaints, Questions etc.

Dear all,

I would like to all and any complaints, fears whatever it be about osteoporosis and it's treatment you have. I want to know why you (if you are) are adverse to taking medicine. I am currently working with Dr. Abel and hope to address the current issues with osteoporosis treatment so if you have anything you wish to discuss please reply and I'll answer to the best of my ability and I'll try not to be biased.

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17 Replies

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  • I have met and watched people suffer dreadful disabling side-effects, including oesophagul cancer, necrosis of the jaw and terrible ongoing gut/stomach issues - all from bisphosphonates. Dentists are also very nervous about bisphosphonates because of the damage it causes to the jaw (necrosis).

    I prefer to receive beneficial vitamins, minerals and other nutrients, for my bones and health, on the NHS... but, of course, the NHS likes to spend taxpayers' money on Big Pharma chemical synthetic drugs with adverse side-effects and pour taxpayers' money into Big Pharma. It's a racket.

    The patient should always have the right to choose their type of treatment. My choice is nutritional supplements inc. minerals, vitamins, etc.

    I wouldn't give bisphosphonates to a hamster, let alone a human being.

  • bisphos' ruined my friends bones too.

  • Hi Axielminim2

    I would rather not take medication, any medication, but needs must sometimes. I chose to take (Protelos) Strontium Ranelate and now it is being withdrawn at the end of next month. I am distressed by this. To date i have no known side effects. Due to scaremongering some time ago, doctors do not tell patients about this OP drug/patients do not wish to take it because of the scares. So few patients are prescribed this drug so it is being withdrawn. I cannot see that there is anything else I wish to take that is on offer at the moment. I have tried the AA and Risedronate and neither agreed with my stomach/bowel. I do not wish to have an injection because there is nothing I can do about it if I suffer side effects. The OP drugs except SR have the possible side effect of joint pain as far as I can see. I have enough of that daily already and am not willing to take the chance that I shall not suffer more joint pain than I already do.

  • Kaarina, you could switch to strontium citrate, which is not a patented drug.

  • Hi Heron, yes, thank you. I did order SC on line for a time in between taking SR and being taken off it. At a later date, on requesting to see a doctor specialising in OP, I was put back on SR, after discussing my medical history. Looks like that could well be my only option.

  • Fosavance has irritated my gut so my gastro consultant says my choices are a broken hip or an irritated tummy. I have reduced Fosavance to every two weeks, take yogurt and walk in the hope all will be beneficial. I green juice once a day

  • Like Kaarina, I am taking Strontium Ranelate with no problems. To me, the risks of taking it seem less than those for all the alternatives - but now SR is being withdrawn, I have got to take the plunge and decide on another med. I see the Fracture Prevention Nurse on Monday. I am terrified of the jaw problems. I see the dentist regularly but do have problems with my teeth and have a mouth full of fillings and quite a few root canal fillings. Also I lost a tooth through dental resorption 6 years ago and I am scared that might be connected with my osteoporosis.

    I spoke to the NOS Helpline recently, which has allayed some of my fears and I will be talking to the nurse about Zoledronic Acid at my appt next week. But the fear is still there and probably always will be while I am having to take these potentially damaging drugs. I feel I have no choice - at 66, hopefully I have plenty of life left to me and I want to be as healthy as possible. I am still recovering from 5 lumbar fractures, so don't feel it is sensible to try and repair my bones naturally. I was living healthily, exercising plenty, yet still broke my spine.

    What we need desperately is a drug that doesn't carry such dire potential side effects. And investigation into alternative remedies, eg is it possible that diet can make the profound difference some claim; can vibration plates rebuild bone as is claimed; does taking a raft of supplements (boron, magnesium, calcium, K2, and the like) really help? I am doing all these things, as well as exercising as much as I am able - only to read yesterday an article by an American PT and Pilates guru that the exercises I am able to do, are not capable of building bone. That cheered me up no end, I can tell you!

    Like most of us, I do what I hope are the right things and try to stay positive - but I guess most of us feel that we really are suffering from a silent disease that people don't understand and, as a result, have little sympathy for. I would include doctors in those people. As a postmenopausal woman going to a GP with recurrent back pain, I realise now that he didn't take the time to ask the questions that would have led to an earlier diagnosis and much less pain. I do have osteoporosis in my family, but he didn't ask and, at that time, I didn't realise that he should have. He just doled out painkillers and rather than refer me to a consultant, offered anti depressants. If only woman were offered a DEXA in the same way that they are offered breast screening, it would be a step in the right direction. It wouldn't help the younger people getting OP and not all women would take it up anyway, but many, me included, would have a scan and find out their risk before real damage was done.

    But I really shouldn't moan - I am one of the lucky ones. I don't have another condition to complicate matters as many people on here do. I admire their courage immensely. Osteoporosis on its own is bad enough! And if scientists can find a kinder medication for osteoporosis, without the fear of osteocronosis of the jaw or bone cancer, that would be very nice thank you.

  • This is what I plan to address

  • Hi Axialminim2 I am 100% against taking any meds at all. I am lucky in that I am fairly young .Have not broke a bone yet etc. When I was diagnosed last August I was shocked to the core ! I thought my life was over ! I dutifully bought the prescribed AA & Adcal ! I sat staring at the packets . I am a gregarious woman . I dress trendily and enjoy a happy active life .On hearing this news I just wanted to curl up and not move ! but I am not 100% daft ! I started reading and researching. I asked people who are far older than me who have it ....I observed the physical conditions caused by the meds they were taking ....and the ones to counter balance .I didnt want to be like diabetic type twos I know that pop a pill and then continue an unhealthy lifestyle.

    I never took the AA and I will NOT take it ! I have come to the conclusion that there is no pill that can magically improve bone density ! Even if I sadly break a bone I will not put such poison into my body ! Its too new and I will not be a guinea pig (poor them)

    Even if I were to take it and had a dxa scan that said i had improved ....what would that really mean ? I will not be dictated to by a machine ;) Its ridiculous !

    I read about the growth market in OP drugs and thought eh ?????

    I keep well on a healthy alkaline diet,do pilates .yoga ,tai chi ,have no car ,walk my dog etc etc . I dont take any meds at all (at the moment ) and i do know i am lucky not to have a thyroid problem or something where i may have to . So this is just my own very stubborn point of view . I have seen too many people get ill due to meds .Indeed I have known several people that have become ill or died as they were "very good patients" ....ie.they did everything their doctors told them to their detriment !

  • What exactly? I am not sure what you mean.

  • All the issues you mentioned

  • Even if AA had agreed with me I would not have continued with it. My mother took AA for years - no mention of a drug holiday. This drug holiday must be a fairly new revelation or her doctor was negligent. I was not aware what exactly she was taking until a couple of years before she died. She died in 2013 and I was dx in 2011/12 so then quickly started learning as much as I could find about OP. I said to her that she had been on AA far too long and should see her doctor...... Five months before my mother died she complained of hip/thigh/groin pain and went a few times to A&E and sent home and told to take paracetamol. Before Christmas in 2012 she again went to A&E and they took x rays and said it showed nothing untoward. I now learn that hairline cracks do not always show up on ex rays. In January, she was waiting in her porch for a friend to arrive and down she went - femur fracture. Her leg was so swollen her trousers had to be cut off her in the ambulance. She was in hospital for 4 months (where she continued to be given AA once a week although I tried my best to tell them to stop, although it was really too late) and she sadly died in there at age 89 and she was so looking forward to planning her 90th birthday party.

    We are the guinea pigs like my dear mum was.

    If one wishes to take an OP drug apart from bisphosphonates one does have to try it first as that is always what the doctors will offer in the first instance. If you give it a go and return to say you cannot tolerate it, another OP drug will be suggested, usually a second type of bisphosphonate and you are told you may well be able to tolerate it..... If you still return saying you suffered side effects, the doctors offer injections ...... which are generally still bisphosponates. As SR is being discontinued at the end of next month I can see my only alternative appears to be strontium citrate bought over the internet. :(

  • A new OP drug Romosozumab was talked about to give some of us a glimmer of hope but that has been withdrawn due to cardiovascular risks. My question is, are there any other OP drugs being tested at this time?

  • I think the biologics are a rather scary proposition at the moment. There is one (tocilizumab) being used to treat RA and now GCA, also successful in treating recalcitrant PMR but really too expensive to be easily available. But now there is new information that chances of serious side effects are much higher than people had been led to believe.

    spglawfirm.com/defective-dr...

  • Big Pharma is only interested in what can be patented... cos that's where the Big Profit is.

    Big Pharma cannot patent natural vitamins, minerals, amino acids, etc. That's why Big Pharma and their lobbyists are so derogatory about the natural fortifying foods of life.

    Big Pharma's only interest is in Big Profit. What provides Big Profit? Patented drugs. No, not the natural, nutritional, fortifying Medicines that Mother Nature and Planet Earth provides, but rather the synthetic Big Pharma, Big Profit patented drugs that attempt to improve one thing whilst damaging several others.

  • your request is excellent as it's directed at the people who have the condition. I broke my hip last year, no problems getting over that, but as I was 70 at the time had to have a Dexa and was diagnosed with OP, breaking my hip was a doddle compared with OP.

    Initially took weekly AA, after six weeks of extreme neck and head pain, stopped taking it, was then prescribed a monthly Ibandronic tablet, month one OK, month two slight neck pain, month three the extreme neck and head pain is back which has lasted for seven days. I was told that they hadn't heard of anyone having this type of pain, I say no more.

    I also take all the supplements to help my body to absorb calcium, have no other illnesses or conditions, take no other medication, exercise daily for muscles and bones but seriously thinking of abandoning these wretched bisphosphonates.

    What I want to know, and cannot find an answer to, is why does the bisphosphonate have this multiskeletal effect on some women, does it mean we are allergic to it and why if it can have all these horrendous side effects, particularly those related to the jaw bones, are we being given it - the only thing I can think of is that bisphosphonate is a derivative of phosphate, which I know is present in our bodies, but phosphate is used as a weedkiller. I work on the basis that if you know why something is having an adverse effect on your body you can then take an informed decision as to whether you can continue with it.

    I fully understand that the NHS has their hands tied on what they can offer for OP, mainly dictated by the Pharma companies but I do feel that more attention should be paid to the side effects of bisphosphonates particularly the long term effects and the fact that it doesn't get rid of old bone, which is probably why these small cracks appear on bones that are difficult to detect................kind regards

  • Hi all - we have made the decision to stop the replies on this thread now for a number of reasons including: worrying newly diagnosed people and some personal opinion about treatments that is not based on medical evidence.

    People who have concerns about treatments should phone our specialist nurse helpline on 0808 800 0035.

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