Susannah - Interview 04

Age at interview: 76
Age at diagnosis: 47
Brief Outline: Susannah was diagnosed in 1978. Over the years she has had many fractures; to her spine, wrists, toe, ribs, etc. She describes her condition as 'extreme osteoporosis'. Susannah does not take any medication. She is concerned about the side effects of drugs.
Background: Susannah is a retired teacher; does voluntary work with homeless people and continues doing further studies. She practices Pilates and Chi Kung exercises regularly.

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Susannah was diagnosed in 1978 but before that, in her late twenties, she fractured her spine. Over the years she has had many fractures; to her wrist three times, toe, ribs, etc. She describes her condition as “extreme osteoporosis”. She was put on alendronate (Fosamax) once daily and later on ibandronate (Bonviva) and later she declined taking risedronate (Actonel) and Strontium ralenate. She is very concern about side effects of drugs and has stopped taking medication for osteoporosis altogether.
Her consultant and her GP have warned her that she is at risk of a hip fracture. Her consultant has prescribed Cacit D3 and she also takes a number of vitamins supplements. The one thing that will persuade Susannah to take osteoporosis medication again is the certainty that they will work and that they won’t have harmful side effects. Besides she does not have a high opinion of pharmaceutical companies and sees them as a ‘money-making thing’.

Susannah has read widely about her condition, its drug treatment, adequate diet and exercise. She has also attended talks organised by the National Osteoporosis Society. She exercises regularly doing Pilates and Chi Kung and would like to have more expert information about the potential benefits of power plates machines available in some health clubs. Little is known in the UK about it and she says that it would be a good idea to research into it.

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The side effects she may experience put Susannah off taking her medication.

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's consultant has urged her to take her medication because if she falls she is at a...

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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The only alcoholic drink that Susannah drinks these days is in a cold/flu mixture she prepares.

Do you drink alcohol?
No. There was a time when I was drinking, taking a glass of red wine a day because that’s supposed to be good. I have got alcohol in the house and I’ve got a wonderful cure if you get flu or very cold. I think, I don’t know if it wasn’t a Russian one. Fortunately I haven’t got the full details but its garlic in vodka. You put garlic in vodka. I don’t know how long you’re supposed to keep it for or what but I have that. If I ever come in freezing cold and I take that I don’t have a cold. I mean it’s better than a flu injection. So I include garlic in my diet and ginger.
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Susannah felt angry about the way she had been treated at her hospital appointment.

And then what angers me very much if I’d been referred and then they have a whole lot of students there at the [name] and the doctors when they want you to bend forward. They want you to bend this side. They want you to bend to that side. They want you to bend back. Fine. But they don’t tell you to do it. They shove you and you immediately set up a resistance because for one thing your bones are fragile. And if they could just speak, they can speak English, and if. I feel like telling them this. If they could just ask me and tell me, I would bend how they wanted but they have to shove you and do it. And it isn’t good because you’re resisting, you’re probably not going as far as you could. That really angers me. And I think that’s very insensitive. It’s an invasion. You know just pushing people about like that. But these are your top consultant people. You’ve got students there as well.
Tell people what you’re doing before you do it. You treat them with normal respect. I wouldn’t dream of treating a child the way they treat you. And if you want people to do something, well they could ask me. Can you bend sideways, to your left side? Can you bend forward? How far can you bend? And they might want to ask you can you bend more. They can ask you whatever questions they like or ask you to do whatever they want you to do and you are a normal human being you’ll tell them if you can do it or not. But as for putting their hands on you and shoving you which is what they do without even asking you, it just infuriates me. I don’t think I’d let anybody do that again. I mean I’d speak to them and tell them.
But then you’re going to make yourself very unpopular and they’re going to write, they’re going to say this is a difficult woman when they write to your doctors and so on. There shouldn’t be personal comments on doctor’s letters to your GPs.
So that would be your concern?
Well yes they could describe you as a difficult woman or unpleasant, But no I wouldn’t let anybody shove me about again. 
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Susannah finds it upsetting when others notice her change in body shape and she realises that her...

I’m getting smaller and smaller all the time. This is the awful thing because my spine is bending more and more. And it was during this last retreat I went on, this girl in front of me said, “Oh why don’t you come and sit on the front. Come and sit on the front row because you’re small.” I nearly died, small, [laugh] me small [laugh]. I found that really upsetting and I said when I saw her after “But you’re smaller than I am.” [laugh]. And she said, “Yes but you’re small”. That really upset me to be seen as small.
So it’s a kind of changing perception of yourself isn’t it?
Yeah I’m not small [laugh]. But I know when I was talking to this, the counsellor in the college where I’m studying. His wife’s got osteoporosis actually and she’s taking the drugs. Something came up about height. He said, “Well I am surprised because you give the impression of being a taller person.” So probably this, this Eastern external body whatever it is, is still there [laugh]. He said, “You, I’m surprised, because you give the impression of being a taller person.”
And when the, the tutor in Chi Kung when he says something about Joanna’s back and they say, “Oh yes”. I don’t know what they can see”. But they must see that my back is pretty rounded. I don’t like that, that’s horrible.
Ok so people making comments about your back.
But some, yeah. But somebody said to me. I know it was a different Pilates teacher that we had the other day and at the end of the class when I was standing at the end of the lesson she said, “Your posture is very good”. I said, “What [laugh] is it?” And she was surprised that I was so surprised. But this was at the end of a Pilates lesson which leaves you standing well.
And well my voice has gone but then I don’t have the force, the strength of breathing because obviously. My shoulders are terribly rounded. They’ve got a lot better thanks to Pilates.
But I don’t have the lung power that I’d really want. And any case and then my voice started cracking a year ago when I got very cold. I’ve stopped singing and that was one of the biggest things in my life always so that’s a great disappointment.
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