Susan - Interview 11

Brief Outline:

Susan was diagnosed in 2005. She was put on alendronic acid but started having a severe burning sensation on her throat. She stopped taking the medication. She is very concerned about the possible side effects of pharmacological treatments.

Background:

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

More about me...

Susan suspected she had osteoporosis a few years before diagnosis. She used to get back pain when bending down or carrying heavy bags. Her mother had severe osteoporosis. Four years ago her back pain got worse and she could hardly move. Initially doctors suspected she had a pinch nerve in her buttocks and sent her to physiotherapy sessions but to no avail. She eventually had a DXA scan (bone density scan) that revealed she has osteoporosis. To alleviate her back pain and improve mobility she was given an injection into her spine which had steroid (she can’t remember the name of it) and that greatly improved her quality of life.

 

She started to take Fosamax everyday following her diagnosis and although she worried about side effects she took it on a regular basis. She then moved to another town and her new GP changed her trademark medication for the generic type alendronic acid. She started to have painful refluxes. She had a burning sensation in her throat and her GP changed her prescription to Actonel. But after reading about medication for osteoporosis and talking to an acquaintance – a medical scientist - about the side effects of medication she decided to stop taking any drugs for her condition.

 

Recently she had begun to feel some discomfort in the top of her spine and would like to discuss this with her GP as well as finding out about what else she could do or take – apart from drugs – to help her condition. But she finds that GP’s do not give sufficient time to the patients to discuss these issues. She said ‘I just find that doctors never give you enough time to discuss these kinds of things. You know if your ten minutes is up that’s it’

 

At the moment Susan’s main form of exercise is walking and gardening and occasional swimming. At present a lot of her time is taken by helping her daughter with her grandchildren, in particular with her older and disabled grandson.

 

Susan was a professional athlete in her youth, a runner, a sprinter and a long jumper. Now she is a keen player of bridge and she is busy most evenings. She lived in Asia for several years and she often travels abroad to visit her son, other relatives and friends.

 

Susan felt that she hadn't received enough information from her doctors about the side effects or...

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. 

Susan finds brisk walking easier to do than slow walking. She does exercises at home when she has...

Stretching, stretching I find is quite good, depending on what sort of pain it is. I, I do fast walking because I find that fast walking is far better than slow walking. Like yesterday with these friends we went to the [city] and we were ambling around the colleges, in and out of, you know, this and that and I had such a backache by the end of the afternoon. So I actually came home and I left them there. But if I do fast walking I can walk from here two or three miles. Fast walking and I’m much better and I don’t get the pain like that. So I find fast walking does help me [laugh].

 

It does help you?

 

Yeah, yeah. Swimming is difficult because although it’s very good for you I can’t do crawling, only breaststroke or backstroke so which backstroke is ok. But I would love to swim more but the [village] pool is now closed down. The private ones I can’t afford. So [laugh].

 

 

Well I, if I do my exercises I do my sister’s video, not video, the tape, her tape and you know she tells me exactly what to do. And actually that exercise is. The one which the physio showed me in the hospital that gave me the sheet for I don’t think honestly they make a great deal of difference. I mean they are mostly stretching or moving your legs sideways or you’re holding onto a chair and do gentle little things which helped at the time a little bit with the pain, you know, but I don’t think it’s, maybe it could be used also as a maintenance if I had the time for it but/or. It’s not a question of will power it is just simple I have so little time for myself that sometimes [laugh] I just like to sit and read the paper and I yeah at night I go and play bridge quite a lot. So you know I’m not around at night to do exercises then [laugh]. 

Susan wishes there was more co-ordination between different services and more continuity of care.

I didn’t know what, how this NHS works sometimes because I had so many papers got lost, couldn’t find the information from one doctor to the other doctor. They didn’t inform the GP so I sometimes lose a bit of, you know, hope in that that, you know, it's just. NHS is very good they’re doing marvellous for my grandson. You know it’s very good but sometimes there are failures obviously so. But I think it would be nice if in situations like that things were a bit more co-ordinated than, you know, everybody knows about what the other doctor was doing, that they are not having to look up everything. They are spending 5 minutes trying to look up or find a paper which is relevant to what happened four years ago or three years ago. And that always takes up the 10 minutes at the GPs you know. Because, you know, they see millions of patients there obviously. And if you don’t see the same GP which a lot of times you can’t then you know they have no idea what I am talking about. And then they have to spend half their time or more trying to look up and you know. So that is very difficult. So there is no continuity basically I feel. 

Susan would like more time with her GP to discuss her concerns.

I just find that doctors never give you enough time to discuss these kinds of things. You know if you’re ten minutes is up that’s it. So, so I’m not a happy person sometimes with that and, you know, sometimes I don’t want to make an appointment with the doctors because they never have enough time for you and you know.

 

 

Well I think the GP who actually was looking after this, offering me these various medications he, he tries you know, reasonably well, he actually contacted you and to me and brought us together. But I always feel that they just don’t have enough time, you know and he is just. He just sort of says things very quickly and you know you just sort of feel right, you know, I was allocated 10 minutes, right time is up. And then you just go. And I don’t, don’t feel happy about these GPs to tell you the truth at all. I’m sorry to say but I don’t. I liked the ones in [city area] where you could a little bit talk a little bit more to people. And but I mean this is a common complaint. I mean that’s the kind of world we live in at the moment. This NHS has its problems. I fully understand that and but you know, as patients we also need a bit of help and a little bit more of time or, you know, so that’s why I sort of tend not to go now because you know I just feel that, you know, you’re kind of put off fairly quickly basically.

 

And also it really annoys me that you know you have to wait sometimes two weeks to see the same doctor who for example this doctor who, you know if I want to see him I might have to wait two weeks before I get an appointment with him.

Instead of playing badminton, Susan remains active by bicycling, walking, playing bridge,...

Tell me about your leisure and social activities. Have you had to stop doing things because of osteoporosis or not?

 

Well yes it was the badminton which I could have carried on because you can do that as older people but that I found was quite difficult basically. Lifting up my arms sometimes I found that was not so good and my knees didn’t like it either so basically I just felt I’m growing out of it [laugh] or getting older. So that, that I had to stop. Bicycling I haven’t stopped. I like that. I still do it. Walking, I actually do more walking than before. No I don’t think so. No I’ve always been active and I try to be and I’m 63 and I’m probably more active than the average 63-year old, a great deal. So no it hasn’t stopped me particularly, just slowing down a little bit so. I think so.

 

But you do sort of gardening?

 

Oh yes I do it because I am divorced so I do all the gardening. I do digging in the garden, cut the grass, anything. Climb the trees, [laugh] I’m joking.

 

And you have your hobbies and friends and?

 

That’s right, yes, yeah, yeah. Well, well my big hobby is basically gardening and I play bridge you know, competitive bridge so it’s take it quite seriously.

 

And you have a circle of friends around?

 

Yes both here and other countries as well and I travel quite a lot because my son lives in [country]. My daughter lives around here and my friends in a lot of places. And I go to [country] of course, my relatives, where I have relatives. So yes I get about quite a bit. 

Susan takes magnesium and calcium instead of prescribed medication for her osteoporosis.

And of course I take, you know, these three and I take magnesium and zinc now because actually one thing I read on the Internet that taking magnesium is exceedingly good for the bone. So that’s what I do. I bought it in [store]. Doctors never recommended that. In various publications or writing on the Internet always magnesium came up on different sort of sources. And then I said right but it can’t do too much harm if I’m careful and not, you know, looking at it, how much one should take and so on. And occasionally I’d think because sometimes I get cramps also and I find that’s what the symptom and magnesium does help. But it wasn’t prescribed by doctors. That was just self-medication.

 

So self-medication but where did you get your advice and information about the dosage?

 

Well it’s on the little box from [store]. It says on it, you know, you take one tablet a day or something like that. But I don’t actually take it every day now because, because I have a healthy diet. I don’t feel that you know I must get something and, and magnesium and everything in my diet because I eat a lot of vegetables. So I just take it every other day or something like that.

 

Have you told your doctor what you are taking?

 

No, no because I only started that recently when I stopped the medication. In fact I will inform him when I see him, whenever I see him that I am taking that. Yeah that’s a good idea.

Get plenty of information and support, live healthily and if you have back problems push your...

Based on your experience what would you like to tell them?

 

Well I think people if they have back problems try to push their doctors a little bit harder than I did initially because I felt that, you know, you’ve been told this and that. Nobody was sure but nobody was actually trying to push you forward because they said, “Well, you know, it might go away” kind of attitude. And I think that is not quite right because, you know, in my case it really just got worse and worse and then everybody was running around, you know, trying to find out what was happening. But I think people should try to push the doctor a little bit maybe for an earlier diagnosis.

 

And also well just a lifestyle, you know, if you have osteoporosis, you know, try to live healthily. Not, I suppose again not to worry about it a great deal but keep it in mind about what can happen. And, you know, live according to that or get advice according to that because it can be very serious obviously. I mean you know I can break my hips or my thigh bones and, you know, I come in hospital and never come out again kind of thing. So that is. I’m always aware of that you know it is a dangerous condition to all intents and purpose and it is an illness sort of, presumably well I suppose it can be called an illness. And I think also people should try to get as much information about it as possible and as much help as they can get.