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Jenny - Interview 17

Age at interview: 62
Age at diagnosis: 55
Brief Outline: Diagnosed in 2003. She has been on several medications' Fosamax, Actonel and Bonviva. She has experienced side effects with all of them. Now off medication and waiting for her next DXA scan. Considering taking the newly licensed once a year drug Aclasta (zoledronic acid).
Background: 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.

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In 2003 Jenny fractured her arm and asked her GP to send her for a bone density scan. Jenny was aware of osteoporosis because due to ME and allergies she has had a dairy-free diet for the last twenty years. The scan confirmed her fears of having osteoporosis.
 
Following her diagnosis she was prescribed Fosamax but suffered badly from indigestion and other stomach problems. Despite side effects Jenny persisted with this drug. After almost a year her medication was changed to Actonel. She took this drug for about two years and although side effects were not as severed as with Fosamax she still suffered from indigestion. 
 
Jenny has had bone density scans every two years but only her first DXA scan was done through the NHS. Her third scan revealed that Actonel didn’t make any much difference to her bone mass density. In fact, her spine was getting worse and not better. She decided to go and get a consultant’s advice. The private consultant she saw prescribed her another medication' Bonviva. She took it for several months but again the drug affected her stomach. On her consultant’s advice she is currently off medication and waiting to have another bone density scan. Jenny is considering to try the newly licensed yearly drug; Aclasta (zoledronic acid).
 
Jenny exercises regularly at home but has stopped attending Pilates and yoga classes because she considers that some exercises are not appropriate for someone with osteoporosis Her physiotherapist gave her several exercises to do that have improved her neck problems and allow her to sleep better at night. She also recommends the exercise book publish by the National Osteoporosis Society. One activity that she and her husband enjoy doing is dancing. She says “pounding the floor several times a week is brilliant for osteoporosis”
 

Over several years Jenny’s medication regime changed from Fosamax to Actonel to Boniva but she...

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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.)

 

Jenny paid for private physiotherapy, which she says has been very helpful.

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Other questions I asked were really to do with my neck because I had just discovered that my neck was tilting over. And I thought, “Well I’m going to be looking at the pavement”. And I’ve got a horror of not being able to look up. So I asked him about that and he said, “Yes, you’ve got the start of the Dowagers hump,” which, you know, really pleased me. And I thought, the name of it alone was dreadful. So I thought, well I knew I'd got it but, and again I went and took myself to a physiotherapist privately. We have a good one in my area. And she’s given me exercises, she’s been brilliant. But the doctor hadn’t given me anything. Again I had to pay. So at the moment it looks to me as if anybody is having some sort of problems they might have to pay. But the physio’s been excellent. She’s measured height and she’s given me exercises for my neck, which has made a huge difference at night. You know, I can get comfortable and go to sleep, whereas before... And she sold me a pillow that would be right for me, to get my neck comfortable. So she’s been very good.  

 

 

(Text altered in accordance to Jenny's wishes.)

 

Jenny had private physiotherapy sessions that enabled her to devise an exercise programme that is...

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And your neck exercise for how long?
 
I do probably about ten, ten for each one and I do this one twice, bringing this back with a double chin. I’ve also got a tennis ball in a sock which I stand against the wall and rub that up and down. It’s on a sock so I don’t lose the ball [laughs]. And that I rub up and down the spine. I also stand against the wall and bring my hands right up so that I’m flat against the wall. I wasn’t flat to start with but I’m more flat now. I can bring my arms up, it jolly well hurts, but it aches to start with, and I hold that for ten seconds. And they are all the exercises from the physio for people with osteoporosis and neck…. I’ve also got the book. I have written to the society and I have got the osteoporosis exercise book which is good. And I can let you see that. I think that costs about four pounds. So I actually got that.
 
So there is a book that people can buy?
 
There is a book and I’ll show you that. You can have a look at that. And it’s got all the exercises in it, the ones that aren’t good are the bending forward ones because you can hurt your back if you’ve got it quite badly in the spine. I think that’s not good for it.
 
I dance. I do an awful lot of dancing. Three times a week we dance. So, yes, we dance and that is brilliant, the dancing we do, for osteoporosis.
 
What are you doing?
 

Well, we started out as line dancers, American line dancers. We do the couples now and that they say, the pounding of the floor is excellent for it. And we probably do it three times a week. My husband does it so we do couples dancing. But line dancing if you are on your own is excellent. And I think they do advocate that, they mention it in their book how good dancing is.  

 

 

(Text altered in accordance to Jenny's wishes.)

 

Jenny used the NOS website and helpline which was excellent. She also used the Internet to learn...

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The website is absolutely brilliant. I mean just type in osteoporosis and all the information comes up. All the medication that’s available, the side effects. You just tap in one of the medications that might have been offered to you and it will tell you all about it, the side effects, what’s coming up. They had mentioned about the yearly injection, you know, before it was actually licensed. So I knew that was in the wings, waiting. So that’s, I think the website there is brilliant.
 
The NOS website?
 
Yes, that’s right. Oh, I don’t know if there’s any other websites but if you just type in osteoporosis it comes up.
 
So, that’s the main website you’re using?
 
Yes, that’s right. Yes.
 
And you also have phoned their help line?
 
Yes, their help line is excellent. They have trained nurses and I have used it three or four times. I am a member but it doesn’t matter, you can still ring the number and they, the nurses will give you any advice or answer any questions. Anything you have got problems with and they are very, very good.
 
And can you remember why you called them?
 
I phoned them about the Aclasta, the side effects. And when it was going to be... I phoned at another time about when it was going to be licenced. Because it was going to be last October but it, I think they put it back to the January. So I did phone about that. I did also look on the Internet for people’s comments. There is a sort of page, I think, where people have discovered all sorts of things with this osteoporosis and I was interested to read their comments. Someone found they had a neck problems, they had long hair like me, looked in the mirror one day and they were absolutely staggered to find out that their neck had gone over and it looked so deformed. So people’s comments and worries are actually on that, on the website so you can go in and… But the nurses themselves are brilliant. 
 

Jenny’s regular neck and back exercises help to keep her back straight and her neck flexible.

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But since I’ve done my exercises, and I do them every day, that the physio gave me, that’s made a big difference. And sleeping at night, I’ve got better pillows.
 
Tell me more about those exercises that you do?

 

Yes, the exercises, they’re quite simple, they’re the neck exercises. And it’s pulling your neck in to make a double chin. You do that about ten times. And then you go back and forward and then round to the side and I do that every morning. And that helps to free the neck. And I do a Pilates exercise on the floor, which I haven’t got room to show you but I could show you, which is extremely good for the shoulders and the neck.  So I do that and as I say I’ve got my routine that I do so I exercise all the body. Keep it all sort of supple.
 
Yes keep my body supple. My back is straight and as I say it is just that bit on the neck. But I’m concerned that I’d hate to have too much of a hump. That, you see people where it, it humps at the back so… but I think by doing exercises and I do them for ten, fifteen minutes every day before I do anything else. And it does keep you supple. 
 

Jenny had ME for over twenty years and found that in the past it was very difficult to find...

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I have got problems with diet. I knew about calcium and I did try and have pilchards, I could cope with pilchards for the last twenty years, fish with bones, bony fish but that obviously wasn’t enough. So I was aware, sort of at the back of my mind that I wasn’t really having very much calcium. I was on soya milk but in those days, twenty years ago, it wasn’t fortified with calcium. You could just have soya milk and it wasn’t fortified. These days it is and that’s a lot better. So I was really quite depleted in calcium. But I have always been aware of diet and eating as healthily as I could. I was very restricted after the ME so a lot of the foods that would have done me favours I couldn’t really eat. But fish I did try and have two or three times a week. So I thought that would be enough but obviously it wasn’t enough.
 
Over the last twenty years I had ME which really upset me and I’ve got a lot of allergies to different foods. And I have been juggling around making my own things for the last twenty years. So a lot of dairy, all dairy seems to be out, and wheat and a lot of other foods. So I have had to be very careful and it’s not the food that I should be eating to help the bones unfortunately. But I do the best I can and eat fish with bones three times a week. I buy my own special biscuits that are not wheat but probably not a lot of goodness in that, I don’t know. But I get by as best I can. But I always cook vegetables and we have fruit and I make my own soups. I do a lot of home cooking. I’m not into junk food at all or convenience food. Not just for me, but for my husband. When I brought my son up we didn’t have a lot of convenience foods. I’m really into diet, you know, it’s my thing. It’s become my thing - because of my restrictions.
 
And have you found alternative sources of calcium because you can't have the...?
 

Well I’ve been having tablets but I don’t think they’ve really agreed with me. The calcium supplements. It’s really difficult. I’ve tried a bit of cheese but I had terrible indigestion after that yesterday. All the time I’m trying different things which I think might help. But I have been relying on the supplements and extra tablets to give me my quota of what I should have per day.  

 

 

(Text altered in accordance to Jenny's wishes.)

 

Jenny goes dancing three times a week and says it is brilliant for osteoporosis.

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I dance. I do an awful lot of dancing. Three times a week we dance. So, yes, we dance and that is brilliant, the dancing we do, for osteoporosis.
 
What are you doing?
 
Well, we started out as line dancers, American line dancers. We do the couples now and that they say the pounding of the floor is excellent for it. We probably do it three times a week. My husband does it so we do couples dancing. But line dancing if you are on your own is excellent. And I think they do advocate that, they mention it in their book how good dancing is.
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