The current medicines licensed for osteoporosis aim to prevent further bone loss and to reduce the risk of fractures. Osteoporosis is classified as a ‘chronic condition’ which means that existing medication does not cure it but can alleviate symptoms and improve the health of bones.
The drugs licensed in Britain to treat osteoporosis are:
Denosumab (Prolia) blocks a substance involved in the development of osteoclasts.
Calcium and vitamin D.
Anabolic drugs which stimulate bone formation
Teriparatide (Forsteo) this hormone helps to regulate calcium levels and the activity of cells involved in bone formation.
Many people with osteoporosis try different bisphosphonates in order to find the right one that will improve bone density and reduce the risk of having fractures and also the least problematic side effects. Many people said that it took some time to find the drug treatment that works for them. To have the best treatment with the least side effects is the ideal but some people faced more difficult treatment options than others, particularly if they had other medical conditions. Many people we talked with started with the cost effective generic drug, alendronate, to see how they got on with it before doctors suggested other options.
Joan is a widow with three adult children. She lived abroad and worked as a radio presenter and as a teacher. She does voluntary work and drives to the continent.
And I started with the, I can’t remember which one, which of the bisphosphonates I took. But I...
Yes. That was the first one and I had a lot of trouble with it really burning me down here. I have had a lot of problems. I have a scarred oesophagus from acid reflux and it really. I did everything to try to. I didn’t even you’re not meant to, to lie down for half an hour. I didn’t even sit down for an hour. I would stay standing. I’d take it in the morning and I just made sure any, every effort to keep taking it. I wanted my bones to be better. And it, because it was so painful.
I tried the other one to see if that. And that was not very good at all. And then that was when I can’t remember who it was. We decided that it was time because of the problems in taking 30 mgs. A day of Lansoprazole that I should try the Strontium ranelade. I find it easier to take actually except it means you can’t have a milky bedtime drink anymore [laugh] or anything. You don’t take those things. And I must admit that I’m probably in, I’m, while I do never forget the Lansoprazole because there are effects the next day if I don’t take it. There are no effects if I forget to take the strontium. So I don’t think I took it last night for example. You know it’s very hard to make sure you... for something from which you don’t feel an immediate benefit to remember you must take it. But I always take the calcium. I take two a day' one in the morning when I eat my breakfast and one at night with dinner. That’s easy.
But I had heard because the, my second drug, the bisphosphonate still hurt me, gave me very bad pains all the way down the top part of my chest, the oesophagus and I had heard from a friend who was at the [hospital name] about Strontium raneilate and it might be worth talking to my doctor about it. And I spoke to my doctor about Strontium ranelate and we decided that it would be worth trying to see if I could tolerate it. And yes I’ve been having it for; I don’t know how long now, a year and a half, two years maybe. And yes I have no problems with taking it. And then last October I think it was she telephoned me to say that the, they would like to take, do a DXA scan on me and do regular follow ups of taking the Strontium ranelate to see if, how effective it was at helping my bones. I would also still have to take the calcium and Vitamin D.
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Jenny is married and has one adult son. She was aware of osteoporosis before diagnosis because for many years, she has had a dairy-free diet due to ME and other allergies.
They put me onto Fosamax which I think is something that you get put on initially. And I really did have a very bad reaction to that. But I did try to keep going on it. I tried for about, not quite a year. And I think my doctor was a bit surprised that I tried that long but I did realise how important it was to actually get my bones up.
But she did actually say, 'Come off it,' which I did for a few months. And then I went back to the osteoporosis clinic for another scan and they put me on Actonel for another two years. Went for my test, after two years, I went for my bone scan and I did find that it hadn’t actually changed which I was really surprised and terribly disappointed at because I’d seemed to cope reasonably well with Actonel. I still had the indigestion and the stomach problems but it wasn’t as bad as on the Fosamax.
So after the next scan they put me on to Actonel. And I tried that and it didn’t do me any favours because, in fact my spine was worse and I’d been taking the supplements as well, the calcium supplements. And they decided that I should perhaps think of something else.
I didn’t actually realise it was as bad as it was. So I thought, “Well I’m going to pay and go and see a consultant.” And he did look at the scan. And he said, “Yeah, Actonel isn’t really working for you. It’s not doing you any favours. We will put you onto Bonviva”. If that doesn’t work because of the indigestion and the stomach problems and the reactions, I could be in line for Aclasta, which is the yearly injection. But at the time I went, which was last August, it hadn’t had a license, it was still waiting to get the license. But he said, “Think about it.” If Bonviva which is every month, a tablet , doesn't suit you then go onto the Aclasta. Which is the position I’m in at the moment. I’m finding Bonviva doesn’t agree with me and I’ve now come off it. The doctor said to come off it. And I am now going to wait a month or so and I shall think about the injections, the yearly injection.
But one of the side effects of Aclasta is an increased heart rate and as I am on the beta blockers to keep it down at the moment. It might be all right when I go back to the doctor, I’m just hoping that it will right itself. But if that’s one of the side effects, it's going to be a bit awkward for a year. If you have to go on beta blockers to sort of calm it down because you are on Aclasta that brings it up [laughs].
(Text altered in accordance to Jenny's wishes.)
People on bisphosphonates mentioned a range of side effects including acid reflux, swallowing problems, scarred oesophagus, indigestion, aching joints - particularly in the hips. Sometimes the symptoms are worrying enough for people to have tests to eliminate other more potentially serious illnesses. Three women have noticed that their medication apparently caused gum problems. A few people reported minimal or no side effects.
Retired nurse, married with two adult children. She is an active member of both the osteoporosis and coeliac disease support groups and says that she is having a 'very busy retirement'.
I was started straight away on Fosamax. Accepted that because I had since read up and found out that Fosamax was the treatment of choice. And after about six months the problems really started causing me a lot of worry. This is pre-coeliac, okay. Breakfast toast, I couldn’t swallow the crusts. I was having to crusts off my lunchtime sandwiches. I couldn’t swallow a slice of crispy apple. I always keep my apples in the fridge. I like them nice and crispy, you know, and I couldn’t swallow. I heartburn to a lesser degree but the biggest problem was swallowing. So I trotted back off to my GP.
So my GP sort of took over my osteroporotic care if you like. So we discontinued the Fosamax. I think I was off it for about three months at his request and then I had an endoscopy to make sure there was no oesophageal harm had been done, you know. That was okay.
There was nothing abnormal discovered NAD as they say. I was then, I was still cautious for a little while with what I was eating still cutting up apple into slices and I still do. But yes it I was relieved to find there was no oesophageal damage. And as I said, I’m convinced now there is no oesophageal damage because I have had two endoscopies. And nothing has been found and I am very pleased about that as you can imagine. Because I’m well aware of consequences of oesophageal damage being not being, you know, being unaware of oesophageal damage. The things that can occur, you know.
Did you have any problems before you started this medication? Swallowing did you?
I was on oral Bonviva once a month for a year, yeah just over a year where again February this year I commented that I was again starting heartburn and difficulty in swallowing. So my DXA scan had gone up beautifully on Bonviva for one year. My spine had gone up point six [ringing sound] and my hips had gone up point two. I was so joyous I practically skipped out of the clinic.
But then Doctor [name] suggested that because because Bonviva had been so successful that we ought to pursue the infusion because of the heartburn. Now Thursday of this week I start the first Bonviva infusion.
Ibandronate, yeah ibandronate.
Some of the people we talked to were clearly concerned about side effects and often learn about these from the medicine's package insert or from friends and the internet. Health professionals explain side effects but the information is poorly retained.
Several people were concerned about the short and long term side effects of medication but it hadn’t stopped most people taking it. One commonly used expression was “all drugs have side effects but I want to feel better.” However Susan and Susannah were so concerned about the side effects that they decided not to take the medicine.
Susannah is a retired teacher; does voluntary work with homeless people and continues doing further studies. She practices Pilates and Chi Kung exercises regularly.
Back then it was every morning and then wait. I absolutely hated doing that. And I also found that it upset my stomach a bit because I already had reflux from when I was 30. I thought it upset my stomach a bit so they put me on to a different type and I think that was a bit better. And there was something that I think became once a week. I honestly can’t remember with these drugs.
Are you still taking that medication?
No, no. They put me onto better medication. It comes out. I read the side effects and there was just no way that I’d take that medication.
What were the side effects?
Oh well honestly I can’t remember but it would affect the liver, the heart, the kidneys, god knows, all sorts of possible side effects, really dreadful side effects. And then a friend of mine gave me a booklet. It tells you what drugs do and I could see even in greater detail there what they did. So I didn’t take it.
So then I was offered a different treatment. And there you had to go to the hospital and have the injection. And when I spoke to the nurse about it she told me that it gives you flu symptoms for two or three days when you have it done. And also she mentioned something of the side effects. So I looked that up and when I did, I just said I wouldn’t have it. I refused that as well.
And then I was prescribed a third drug because suddenly they change they get more and more new things and this consultant really persuade me that I really desperately need to take the drug because I’ve got it severely. And they tell me the awful things that will happen if I don’t take it. And so I went and I got it. I thought, well I’ll take it. But I had taken something for about two years and it hadn’t made much difference. And when I read the note inside with the side effects there was no way I was going to take that because I’m not young and so the organs of your body aren’t going to be that resilient when you read what they do.
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Susannah is a retired teacher; does voluntary work with homeless people and continues doing further studies. She practices Pilates and Chi Kung exercises regularly.
What they do prescribe is Cacit D. That’s calcium with Vitamin D. And last time I saw the consultant she wasn’t at all pleased with me [laugh].
What did the consultant say to you?
I’ve got the letter that she sent to my GP if you want to see it.
Ok can you read a little bit from that letter?
“Oh, I’m afraid we have a problem here in managing her condition as she is not willing to take any medication advice so far.”
It’s not so, I did take medication for two or two and a half years once. And she goes on, “I did take alendronate”. I refused Risedronate and perhaps the one that you asked me about the injection, perhaps that was Ibandronate. I don’t know. “She’s concerned about the side effects”. And so on.
What is your main concern about the available medication for osteoporosis?
It’s going to make me ill in other respects.
That’s your main concern?Any other concerns about drugs?
No that’s the only concern about drugs. I’ve read about them. And more people die in America from the drugs than from anything else whatsoever. And this is prescribed medical drugs. More people die from those than anything else. I don’t have a high opinion of these pharmaceutical companies. I know it’s all a good money-making thing.
But what has the consultant said to you?
Yes she has tried to persuade me. She has urged me to take it yes.
What has she said? Do you remember?
I can’t remember. I don’t know if it was she who said, “If you break your hip, you’re in danger of breaking your hip. If you break your hip you get pneumonia and you die after five years or two years or something.” [laugh] And leaving her she wished me the best of luck [laugh] that was her attitude. But she did prescribe extra Vitamin D, in fact 1000 International Units. So that’s something I’ve started taking.
So the potential risk is quite serious?
Yes. I’ve got written, here this is two years ago, and it seems to get worse every year. My spine T score was –4.5. So there have been improvements because the spine was previously –4.9. It went up to -4.5. I think the hip was previously –1.3 went up to - 1.8. On the last measurement that I had and this is taking no medication, no drugs anyway for two years at least, the spine had improved slightly but the hip was worse.
What would convince you to start taking medication?
If you knew that the medication really would work. I lose bone terribly quickly, very fast turnover. And if there was one that could actually, that did actually deal with the problem if they knew it would, they could prove that it dealt with the problem.
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Married; two grown up sons; works part-time. She is a keen gardener but since diagnosis she regularly does weight bearing exercises. Maternal history of osteoporosis.
So he put me straight on to Fosamax. I take it once a week and quite a high dose of calcium which I take every day, two tablets every day. And then said that I should have another test in a year or two’s time which I did last year, I had another bone density test and I’m now my bones have improved. I’ve gone back to being osteopenic so obviously the Fosamax works. But he said to carry on taking the pills and the calcium and I go to the gym twice a week.
The Fosamax I take once a week. It’s quite difficult to remember to take a pill once week. I really have I have missed I think in two to three years, I think I’ve missed three Mondays but I always take it the following day. And what’s the other thing? And the calcium, I’m always forgetting to take my calcium and always having to sort of force myself to remember. I find taking pills very difficult to remember because I’m not a pill taker [laughs].
The only one that slightly concerns me is the Fosamax because you, I don’t know, you hear things. I mean a friend of mine said cheerily the other day that her mother had died of cancer of the stomach and she’d been taking this pill for years and maybe I should be careful and find out more about it. I feel that you’ve got to die of something in the end but [laughs] I don’t know, I have no idea about the side effects of this pill. Suffice to say I feel absolutely normal and fine and I don’t have any side effects. But God knows what it’s doing to me inside but if it’s making my bones stronger that’s something. But how do we know. How do we know what all these chemicals in our bodies do to us?
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Michelle is a medical doctor; married. Her mother and maternal grandmother both had osteoporosis. She has always been physically active practicing several sports and jogging three times a week.
When I went it was apparent that this hip was getting worse and worse my GP referred me and he did some x-rays and then sent me to a rheumatologist.
And it was he who wanted to review again all the risk factors and he took me back through contribution of coeliac, the contribution of my family history, any potential contribution of osteoporosis to this which he’s not he ruled out in the end. Said he thought it was due to the ski injury to my knee which damaged the hip and that probably provoked the formation of all these little barnacles but he did think that the Actonel was contributing to this the rapidity with which these little growths were occurring on the interior surface of the bone. So that then so with him saying that I stopped it. The GP had already advised me to do so and I just and I didn’t stop it because in [country] we don’t we weren’t stopping it we were carrying it on forever. And he said, ‘Ten, fifteen years. You don’t you don’t need it and the benefits, you’ve achieved the benefit.’ And then the rheumatologist was saying, ‘Not only is the benefit achieved its possible now during this period of inflammation in the joint that you may.’ I mean I suppose I could go back on it now that I’ve had that replacement but I probably won’t.
People were also prescribed calcium and vitamin D mostly Calcichew D3 Forte and Adcal D3. Women diagnosed before the arrival of medication for osteoporosis said that they were usually prescribed calcium as well as HRT.
Cressida lives by herself but her daughter who lives nearby visits her regularly. She describes herself as 'fiercely independent'. She needs help with cleaning the house and with washing her hair.
Did you know much about osteoporosis at that time?
No not a lot. When I was about fifty, I think, I did take, have some little calcium pills. But actually at that time, apart from a HRT, I was put on to.
Anyway they were calcium pills that came in, in a long tube. And you put them in water and dissolved them.
And I tricked all the… I was it, I was on a hideously large amount like eight of them a day. So and they only had packages of twenties. I was in every five minutes. Luckily I didn’t have to pay for prescriptions because I’ve cost the national health an awful lot of money. Yes I have [laughs]. And I carried all around Australia in my backpacking time, I carried that, all that. But I cut it down to six a day then. Because that really… calcium is a heavy thing to have to lump around.
Reasons for taking medication
Many people took medication because they believed it gave them a far better chance of maintaining or improving their quality of life. Some did it because they worried about the prospect of being incapacitated and dependent on others in their old age. Others, because they want to increase bone density to avoid having more fractures. While others, having regained bone, wanted to maintain it. Trust in medical knowledge was also mentioned as reason for taking medication.
But it is not always easy to comply with a treatment which you feel is not making you feel any better, especially if you are experiencing side effects from the medication. Some people didn’t know how effective their current medication was because they hadn’t had a DXA scan in the last two years or so. Several people complained that they couldn’t see an immediate effect on their symptoms, particularly if they had pain. But a few men and women did think that their current medication was not working for them because they hadn’t seen any improvement in their pain levels nor had it stopped them from continuing to have fractures. So, some admitted that at times, it was easier or tempting to forget to take their medication particularly if they were having adverse side effects from it. Infusions treatments are done in hospital, which involves travelling to hospital for treatment which could be difficult for elderly or disabled people. A few people have had other serious medical conditions and not enough medical advice to make them aware of the need to have treatment for their osteoporosis.
Laurence works in a dairy farm, is married with two adult children. His mother had osteoporosis and his brother has the condition. He was thinking about early retirement or part-time work.
Yeah, I was on that Didronel. It was it a double pack thing it was… Forty, bit like Alka Seltzer you had to dissolve in water and take them every day. Then after that forty you had to take anti acid tablets every day. Then I went on to Actonel and now I’m on alendronic, one a week instead of one every day. You know, I often wonder if that one tablet a week it it’s as good as the ones I could take every day [sighs].
Have you discussed that with your?
Well yeah, no.I go to the doctor, and she just said, ‘Well tough.’ Basically and that’s what, you know, that’s what you’ve got to take and that’s it basically.
Because it I mean as I said it’s I’ve had pain for a long time but, you know, I was just contend to take the Actonel or whatever that has been prescribed but it’s only the last, you know, I said I’ve learned to live with the pain basically what I had then like, you know, because I know where it hurts it hurts. It’s always in the same place, the bottom of my back. But as I said six months ago I started getting pain in the high higher up me back and I thought, ‘Hello. This is, you know, different thing.’ And in as I said I get it every day basically for months anyway and it’s only after, you know, long time now that I decided well, I’ll go down. Because it’s like you see like you get over it. [sighs] Well if you’ve got toothache so you make an appointment to go to the dentist and nine times out of ten you go down that dentist on the same day the tooth pain goes. And that’s the same I suppose over me back I suppose I think, well I sort of go down, make an appointment go down and see the doctor about me back get down there and the pain be gone. But it didn’t it wouldn’t you still I’ve still got still got it and. Still getting it basically [laughs].
More time to discuss your case, to discuss your problems and concerns?
Yeah. I mean, is alendronic as good as… which you take one a week, which as good as Didronel or Actonel which I took every day. I mean to me they can’t they can’t be as good. Or is it a cheap a cheap option then?
So you need more information about medications?
Well yeah, yeah. I mean like said you read, as I said the wife reads in the paper that it people can get this and that to promote bone growth blah blah blah because it costs five hundred quid or something too much money basically.
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Elizabeth regularly travels abroad to see family and says that osteoporosis hasn't stopped her from having an active life and that she only thinks about her condition when she fractures a bone.
In 1978 I fell and broke a femur. And after that they decided that I had osteoporosis. And so I have been taking one of these weekly tablets ever since then. I’m not sure whether they do any good at all [laughs]. Because I have had numerous falls since then and it’s always resulted in a…
In a fracture?
In a fracture.
What’s the name of the medication? Do you remember?
Yes it’s out there. Alendronate, is that right?
And fractured a femur which was just after we moved here. And since then I’ve had two fractures to that wrist. So this is why I’m not sure whether the tablets have made much difference to me. Or whether it’s the… that I fall badly.
And so it’s only when something like another fall happens that you start thinking, ‘Oh dear’. My bones aren’t very good. And certainly this last fall that I had in France, the consultant there said, “Your bones are just like glass.” That was that.
Well no, because I think it’s just something I’ve got to live with. I mean it isn’t a curable thing. But presumably as long as I take these pills, and I do take a couple of calcium tablets a day.
How long have you been doing that?
Oh, years and years and years. Good ten years anyway.
OK. Suggested by your doctor?
The doctor, yes.
So I do that. But I mean, otherwise I don’t think there’s a lot you can do about it, is it? I mean, I think there again it’s a good idea to keep walking.
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Widow, retired secretary, lives on her own flat in sheltered accommodation. Betty uses herbal medicine extensively and has accumulated a great deal and knowledge about it.
He then suggested that I tried Fosamax but this gave me horrendous bloating which I’ve now discovered was because of the artificial sweeteners that are in them which disagreed with me in any form in food or in tablets. I went back again and in 2004 he recommended infusion of Pamidronate.
I had them for two years. I had eight of them in two years and then due to the transport problems in getting to [name] hospital in, no, sorry getting to the hospital in the centre of [city], due to the bombings and everything and also my increasing disability I couldn’t travel on the tube I had to stop treatment because the hospital was right down in the centre of [city] and on the central line. The last time I went there was in July 2006. I then saw the specialist again there. He said, “Oh oh, leave it for a year.” Was twenty second of May 2007 and said then when I saw him that I really couldn’t manage to get down into [city] because my daughter had to come with me that time.
And I then got referred to a doctor a specialist at a hospital which is about twenty miles away from here but it’s outside the M25 so therefore my daughter can take me in the car and we can park in the disabled space at the hospital, very easily.
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Neville is married, has two sons and he is a retired Head porter. He is grateful for all the support his wife, sons and grandchildren give him.
That’s right, yes, the Fosamax. And I haven’t taken any for some considerable time.
So you just took it for, for a little bit and then just forgot about it?
Forgot about it. I, at the moment I don’t take anything. I just watch what I’m doing and be careful. But I do I must admit, I do suffer from very, very bad pain, lower back pain.
Was the Fosamax also giving, giving you stomach trouble?
It gave me tummy trouble, yes, yes. So I didn’t take that.
Were you getting acidity?
Yes, that’s right, yes, yes.
So it was painful?
Very painful. So I forgot about that. I probably I’m, I’m lucky really because normally I, I’m very tolerant with tablets, because I take quite a, have to take quite a few tablets and I’m all right with those. I mean years, eleven years ago I had a heart attack and they tried to put me on a tablet, and I couldn’t take that. So they decided to take me into hospital for a week to concentrate on me taking that tablet and eventually I managed to take it. So now I take it twice day and, religiously. But that’s just one thing.
I think if I’d had more information, probably knowing what it involved, I may have persevered more. But I really haven’t had any sh-, form of information about osteoporosis. One piece of paper, that’s all I’ve ever had. N-, nobody’s ever spoken to me about it, what it involves or, and they just said to me, “Well, you’ve got to be a bit more careful in case you break your bones.” And that’s as far as it’s gone.
And do you remember roughly when did you stop taking the Fosamax altogether?
Some time ago now. I can’t remember now. Some, some time ago. It, it must be a, must be a year ago.
What do you think would have helped for you to remember to take that tablet?
I don’t really know. I suppose it’s me more than anything. I can’t blame anybody else but myself really. My wife did, does remind me of taking the tablet, and I said, “Oh, no, I’ll take it in a minute.” Then I forget if I’m doing something. But I suppose I’ve got to do something now to try to ease this pain in my back.
So have you made an appointment to go and see your GP?
Well, well, I’ve got to go again in about four weeks’ time and change, have my prescriptions renewed, and then I shall bring the subject up then.
I have a, ileostomy bag now, since I had my operation three years ago. But I’m all right. I mean I’ve quite well, you know, I’ve done quite well really. I mean once, when I had the, after the cancer operation, I was in hospital five weeks, but after about four weeks my consultant, Mr [name], came out and said, “You don’t need any further treatment because it’s cleared.” And so far, touch wood its, I’m okay.
A few people with severe osteoporosis and who had already tried other drug treatments with not much improvement were put forward by their consultants to get funding for the more recently licensed drug, teriparatide (Forsteo). Forsteo is administered through subcutaneous injections. This 24 month treatment is expensive and there are guidelines as to who can get it on the NHS: namely women and men over the age of sixty-five, with two or more fractures, very low bone density, and who are unable to tolerate, take or have an unsatisfactory response to bisphosphonates.
Diana, who is seventy, was recommended teriparatide by her private consultant shortly after she was diagnosed. Robert with the support from his consultant campaigned to get the treatment under the NHS. These people were all experiencing severe pain as a result of severe spinal osteoporosis and Sheila was confined to a wheelchair. Those who have already completed their treatment said that their DXA scan showed an improvement on their bone density. Sheila and Robert however, still need morphine patches for the pain which is the result of deterioration of bone health before diagnosis and before teriparatide was given. Victoria Iris is eighty-three years and is currently undergoing teriparatide treatment. She said that injecting is not a problem but the paperwork can be confusing.
Married with six grown up children, worked part-time as a domestic but took early retirement due to ill health. Two of her daughters have also been diagnosed with the condition.
The second time I went to see him [consultant] he said to me, ‘You’ve got osteoporosis which is deterioration of the bones through lack of calcium’. So he said, ‘I want to put you on this weekly tablet to try and build your bones back up again’. Which obviously the bone tablet wasn’t strong enough because my, they’d gone too far. You know, they were so thin but this is how I kept getting fractures. And so then of course, after a. It must have been going on for a year I would imagine. He said. I had a letter to say he would like me in the hospital for ten days, so ten days like a pain clinic. And he said, ‘I will try you on these various medications to see which suits you best. Which works with you, on you.’ But none of them did because I kept getting a fracture. I’d only have to bend down and I’d get a fracture. My bones were so thin. And then it must have been three or four months later he said, ‘I would like to try and get this Forsteo’. He did say the name.
He said, ‘I’d like to get this funding for you for this drug if I possibly can because,’ he said, ‘I think that is the only treatment what would possibly work with you.’ So I waited about six months I would imagine and then I got the. The nurse came out with the you know, all the pens and whatever like and showed me what to do for the first time. And from then on I started to do it myself.
How did you find that? Was it difficult, easy?
No. I just used to do it in my stomach, in my thigh, you know, when it. I got used to it.
It’s just like having a little needle pricking your finger, you know. And that’s what I say, I was on that drug for 18 months and then after the 18 months like, you know, I came off it but I’m still fine. I think it built my bones right up you know and I’m quite strong again.
But before that I was in such terrible pain. I was in a wheelchair two years ago getting fractures all the time, backache constantly. I had a job to walk. My husband used to have to do everything for me until I used this drug which took three months to work which when it did it was marvelous. I could, I can walk. I can do things now which I could never, couldn’t do before and as I say, you know, it’s a wonderful thing.
And they’re very good, you know the nurse came out. She showed me what to do and she said, ‘If you want me to do it for you every day I will’. And I said, ‘No I’m sure I can do it myself’ [laugh]. So I did. I had a go at doing it myself and I did. I used to do it every day and it was. I could feel myself getting better every day, you know.
Can you tell me more about that?
What the injections?
The getting better bit. How did it get better physically, emotionally?
Oh yeah, I mean all the. Once I knew I was on this drug I felt better in myself as well because I thought, you know, I know at the end of the day it’s going to do me good. I just knew it was going to do, you know, make my bones stronger because he told me this.
The consultant said, you know, ‘Your bones will get strong’. He said, ‘And, you know I would like to keep a check on you and having the, different bone scans now and again which I did. And I could feel myself getting better and stronger. My bones getting strong
Age at interview:
Age at diagnosis:
Diana is retired, a widow and has two daughters. She walks everyday and once a week, she and a friend go with their local walking club for a longer stroll.
Then from there I came back home. I went to my doctor’s and I decided, “I must get something sorted privately, because waiting for the National Health it’s going to take a while.” But when it all turns out it was fortunate I was in Majorca, because I had all, everything done over there, because it was private, you know. I was in hospital for two nights. I was on a drip and they gave me some medication. That was in [town]. I’ve still got the X-rays actually from there, which they gave me to bring back. Then when, I went to see a doctor in town and he suggested that I went on the Forsteo, you know. But he said, “The National Health doesn’t, won’t pay for it. You’ll have to pay privately.” Which was a struggle, but I managed. And after injecting myself for eighteen months I, it was absolutely marvelous really, you know. I mean I think, I don’t know whether it’s me or what it is, but it really has done the trick actually.
When you saw this private doctor, he explained why he was recommending these injections to you?
Yes, I think what it was, was because the, everything that come from Majorca, my osteoporosis was advanced and it was the quickest way to get some relief, you know, to help it. Actually the, the Forsteo takes the osteoporosis out of the spine. But it does not take it, if you’ve got it in the hips, it does not take it out of the hips or anywhere else, but it will take it out of the spine as long as you do the eighteen months’ course.
The Forseto, yes. Well, what happened, shall I tell you what happened?
A nurse, well, I don’t know if she was a nurse actually, but she knew what she was talking about. I think she just understood about the Forsteo, you know, she’d been trained to tell me. She came to the house and showed me how it was done exactly. And I said, “Oh” I said, “So will you be coming tomorrow to do it again?” “Oh, no” she said, “You’ll be doing it yourself” you know. Horror actually, [laugh] thinking, “Oh, gosh, you know, injecting, you know, myself.” Which I’d never done, you know, I’d ne-, and anyway that was it. My daughter actually came down, she works in [city] and she came home, came down every night for a week to be with me while I injected. And after that, it, there was no problem.
Yes, oh, yes, yes. I used, my friends and my family thought I was very brave to be doing what I was doing. But then they hadn’t suffered the pain I’d suffered. And I can’t describe the difference it made. And there’s literally no after, you don’t get any after-effects with injecting.
And I mean the point is that I think with something like osteoporosis, I was in an awful lot of pain when I got back. And I went to, you know, my daughters were with me, went to the GP and, because you burn, you burn up at the back. And I remember sitting on the seat waiting to go in to the, see my GP, and I thought, “Oh, my back’s on fire.” You know, it was so hot. I get none of that now. I mean those injections were actually fantastic, I mean it’s a struggle to have to pay to get them done, but it’s, you just think, “What price is health?” I mean it’s so much more important to be able to lead a normal life for that amount of money really.
Hormone replacement therapy (HRT)
HRT is still used to prevent osteoporosis where other drugs may be contraindicated (should not be used by this person). Some forms of HRT are approved to treat a woman with osteoporosis. There are concerns, however, about the possible health risks of hormone therapy in relation to an increase in the risks of breast cancer, heart attacks, stroke and blood clots, especially in women over 65 years. (For more information see our section on HRT and the menopause). Irene was diagnosed with breast cancer after taking HRT for almost a year. She underwent a lumpectomy and radiotherapy. HRT was stopped.
Several women were prescribed HRT before developing osteoporosis and then later went on to be diagnosed with it. Likewise those put on HRT after diagnosis (in the 1960’s) felt that it did not stop them from losing bone or having fractures. Margery was treated with HRT and a biphosphonate and said that it had improved her condition. Keith was put on Testogel; a hormone replacement treatment for men to increased testosterone levels, but he had an adverse reaction to the treatment. Bisphosphonate can be used instead of male hormone replacement therapy.
Widow, works full-time as an office administrator. Lives with her two adult children and has an active social life. She has noticed some improvement since started on Strontium ranelate.
And then at that time doctors said that I should, I may suffer from Osteoporosis. She explained to my GP. And my own, my GP always said that I had problems with the bones. And I should be careful. And that’s it. Nothing else happened. And I was on HRT so I thought it was helping.
And then and again once I had an accident. And that accident was so severe that I had, I fall off a ladder. And it, the back of the ladder poked me at the back of my ribs. And which hurt up to the sternum in the front. But no x-rays were taken. The problem was that no x-rays was taken. They said no you don’t need an x-ray. We don’t, my GP was thinking that she doesn’t want to put me into the radiation again and again because my conditions are already bad. There’s no point of taking these x-rays, so long as we know what is happening. And that’s it. I was only given painkillers all the time. And nothing happened.
And then in 1999, I went to America to see my sister. And my sister suffers from osteoporosis. And I went to, with her to the hospital. And she just introduced that this is my sister, she comes from England. And she has a problem but she is not on any medication. And the doctor asked me that is why is they haven’t given a medication. And a medication called Fosamax is very good. But probably in England because it is very expensive they will not be giving you. But I wasn’t sure. But I did tell the doctor that I haven’t had any problems because I’m on HRT. So I don’t need any other medication as far as I am concerned because wherever I read in the magazines or any some articles about my bones, osteoporosis, it doesn’t say that I need to have any other medicine because I’m on HRT. So that was it.
But when I came back and when I’m, when I used to hold some, any little thing, even a baby, and that was a time when I was holding a newborn baby, at that time I could not hold a newborn baby. The newborn baby was only about eight, nine pounds. And I could not hold it. I had a severe pain in my back because my ribs were already very weak.
Age at interview:
Age at diagnosis:
Margery is married and has two adult children. She is a retired college lecturer. She served as chairman of a local group in Scotland for nine years and a trustee of NOS for five years.
He straightaway said that I needed a new drug, a comparatively new drug, called Fosamax and alendronate and he thought this was the best treatment for me.
I took this drug for eighteen months before I was sent, I was recalled for a further scan and unfortunately the results were not good. Not only had I not failed to lose any more bone, I had actually lost more and the consultant was very concerned and immediately put me on to a calcium and vitamin D and HRT.
All together I have had six DXA scans and once the HRT and the new treatment, the combined treatment began to take effect my bone density showed a tremendously encouraging improvement. I was kept on the HRT for I think altogether six or eight years. I had no adverse effects from it. I found that it improved my life quality in many ways. I had a lot of energy and I really felt very well on it, but at the end of that time because of various scares about breast cancer and so on my GP said he thought I had been on it long enough.
Since then I have kept on the Fosamax and the Calcichew D3 Forte. There has been a slight falling off in my bone density but it’s not significant. Overall the density of my spine has gone up some 22% and as I have got older of course my bones would have got more porous anyway, so in fact I am now osteopenic for my age. I don’t actually have osteoporosis as such and I consider myself extremely fortunate that without this treatment I would not have been able to lead the active life that I have done.
Age at interview:
Age at diagnosis:
Keith works full-time as a statistician and he is also a concert pianist; single. He was aware of breast cancer in men but thought that osteoporosis affected women only.
He said well it was only mild Osteoporosis, he said there is nothing, he thought it was probably mainly hereditary, given my mother’s history, but also probably exacerbated by the low-ish testosterone.
And he said it would be a good idea to take some HR, you know take HRT. So he, and he said so he said get your GP to prescribe Testogel. And, which she did. And, so I’ve been taking that now for about three months, because, I didn’t see my GP after that, but she wrote a prescription for me to pick up.
However, it’s not been you know entirely satisfactory. I mean to begin with, when I started the medication about three months ago I did actually feel a lot better. And I was also having one or two problems with my sex drive before that. No doubt really to the testosterone and it cured that straight away. And but after months I’d begin to be you know, I began to feel I’d changed a bit, as a person, I started getting a bit more irritable, you know a more adrenaline fuelled.
And she started getting worried about me and I said well I, it’s, it sounds like you know; it must be the testosterone I think, the Testogel. So what I’ve done actually, I’ve cut down the dose to about, from one a day to twice a week, and in fact I’m just about to go to book an appointment with my GP as my, initially you know two months supply has now almost run out after you know after three months. So I’m going to, that’s what I’m going to do. I’m going to discuss reducing the treatment.
Very few people we talked to had participated in clinical trials. A few women were invited to take part on a DXA scan study and only Sarah participated on a clinical trial testing a drug for osteoporosis. But she said that her experience wasn’t a positive one because the people doing the trial did not send her diagnosis of osteoporosis to her GP and it meant several years delay before Sarah was put on medication for her condition.
Retired NHS ward clerk, married. Sarah had an early menopause at the age of forty-two and a hysterectomy. Nationality/ethnic background' white British
I saw an advertisement for ladies who had had falls, fractures in their middle age, and would they like to be tested for osteoporosis? So I went along, had a test, had a DXA scan and discovered that I had osteoporosis. Which was a bit of a surprise to me. It was the first time I knew it. But I had had several fractures in my wrists as I was fall, falling over. I’m a bit prone to falling over. And I did a trial. That was when I was 55. So I’ve had it now six years.
Do you remember if at the time they told you that they would send the results to your GP?
Yes, they did tell me and, unless my GP didn’t read through everything. That’s why I d-, I went for a few years, that gap with not having any treatment whatsoever.
But this lady who, in 2002 when you took part in this clinical trial, did this lady explain to you about osteoporosis and what you are supposed to do in terms of medication?
No she didn’t. She said it’s just, it’s strictly a trial and they weren’t there to offer me any help really. No explanation. Just to help them in, in their trial. Which is a bit mean really, isn’t it? She said, “If we...” I do remember her saying though, “If you have got any trouble, if you have got trouble, we will contact your GP.” But I think they slightly forgot, yes. Perhaps they did with other people and I was just unlucky.
Did you know that, back when you took part in this clinical trial in 2002, that it was something that you will have for life?
Just didn’t...Osteoporosis. I must have been stupid. It didn’t occur to me that it was that serious, because nobody contacted me. And you sort of have faith in your doctor that if there is something wrong they are going to call you and tell you. But perhaps as they hadn’t invented the acid before, they hadn’t got anything to actually give me apart from the vitamin D tablets.
All the drugs currently used in the UK are licensed for post-menopausal women. Some drugs are licensed for use by men. For premenopausal women and younger men these drugs can be used but with the guidance of the specialist.
Jane is a university lecturer and lives with her partner and their son. Both her maternal grand-mother and her mother have osteoporosis. Jane feels let down by the healthcare system.
And then there’s also the question of drugs as well. So all I take is Calcichew. Don’t take any other like Fosamax or whatever they are. And then I, and when, in, the first couple of years I was really up on research and then I’ve just, I kind of lost the will to find out anything more now.
I think because I’m, I’ve still like late child bearing age and haven’t gone through the menopause then I think from all the consultants I’ve seen it’s been a no drugs other than Calcichew. Two tablets a day. Which I was, I used to be really very good at taking. And I haven’t been as good at taking them of late, I think, because I just feel a bit fed up with it all. And it’s only a two little white tablets every day but… I don’t’ know if there’s bit, see there’s a bit where I do actually want to fall down, just to see if I can get back up. But obviously I don’t want to fall down. And because I’ve got the osteo penini (osteopenia), Italian sandwich now, then I’ve gained bone and I want to keep it. I don’t want to give it away.
And then if the change of life just comes along and, and I know loads of like friends who’ve gone through the change of life who’ve never quite noticed it. So if it’s a secret one, then I’ll have another loss of bone. And so the pre-emptive side doesn’t happen in hospitals. Doesn’t happen with consultants. I think they’re reactionary but not pre-emptive. And so if I was a consultant I’d be thinking, “We’ll get her before it goes.” Or, and I know the, I can’t say their names but the bi -, the Fosamax things, they don’t give me them because I can have a baby. Whereas I’m quite happy to get sterilised. Because I couldn’t go through another pregnancy, ever.
Several people think that their GP hasn’t given them much information about the condition and how their medication works. The repeat prescription style doesn’t provide the opportunity to discuss any concerns they may have. Because of this, a few have seen a private consultant in order to find out more about osteoporosis and their treatment options, as well as talking about their own particular concerns. Insufficient information or advice from their doctor led to a few women deciding not to take their medication (see also Communicating with health professionals).
Susan lives on her own but her daughter lives in the next village. Susan's mother had osteoporosis. She would like more information on non-drug based treatments for osteoporosis
It is a dilemma for me because you know I would like to get my bones stronger. I would like to feel better. And, you know, know that I don’t have to worry for my old age but at the same time then I worry about the side effects. I must say I do worry about the side effects of these medications. And you know, I’m not, never reassured by the doctors because, you know they don’t actually inform you at all. So if I wasn’t reading a lot of papers, a lot of people they don’t even read the piece of paper they just take the medicines. And you know, for me it is very important. I never take medicines without reading about it on the piece of paper which it comes with. And then I also try to do some research into it.
They did say, you know, that you know if I take this medicine my bones will get stronger or they think they will get stronger. There’s probably for some people, it probably doesn’t work for other people. And yeah I mean, you know, I had basic explanation. I don’t think that any of the doctors had particularly taken time to explain anything further but had I asked more questions I’m sure they would have been willing to answer.
I mean somebody must keep some kind of tab on how many people get this jaw problem, you know, your jaw rots away. I mean I read that in so many publications that it can happen. But again what are the chances of that happening? I would be quite interested to know that. What are the chances that I’m seriously going to hurt my gullet or my throat or my oesophagus and or any other of my inside bits which you have to be very careful when you take this.
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