When I agreed to take part, the doctors, like they
randomised me to one drug. And then I went to get it from the pharmacy. And
then I have to take that every day. And then if I run out I’ve got to go back
to the pharmacy and get more.

So when you say, how do you have to take the drug?

I was randomised to drops of something, and I’ve got
to take seven drops a day. And they have to be kept in the fridge as well.

Well, the drops have to be kept in the fridge. And
then I have to take seven drops every day. It doesn’t matter whe the lady
said, Just take it And then if I run out I’ve got to go back to the pharmacy
in the hospital to get, but usually I’m there anyways for an appointment, so I
get it when I’m there.

And how, how long do they normally last- the drops?

They last maybe like three months quite well, because
it’s drops. So they give me like a few tubes there every time I go.

So you go when you said you, when do you have your
sort of regular appointments?

Every time I go they book me in for another one in
the, in like the next two or three months.

I think it would have been a bigger thing if I hadn’t
been diagnosed and hadn’t been having to take other drugs at the same time.
Probably because it’s at the same time it’s been more like mixed up together.
So when I go for like, when I go for my appointments at the hospital it’s all
like mixed together. So it’s not like separated into two different things. So,
yes, so, yes, it seems like less because it’s taking up less.

What would you, what are you hoping might happen at
the end?

Something good. That my bones haven’t been thinned
that much.

And have they said when you might get any results at
all?

Not really. ( No?) I don’t think so. Maybe at
the end of the year.

Do you think it’s important to have those?

Yes, it’s important to have results. Otherwise you’re
just taking it and not knowing what’s going on.

Would you like to have some results?

Yes, yes. I’ll probably ask about that next time.

Well, I was diagnosed with lupus when I was 16, nearly
17. And then, from then I got asked, because I was put on steroid tablets, I
was asked to, to do this POP study because steroids thin the bone, I think. And
then the study is to see if any medicine could help to stop that happening. So
I was asked to join that. And then from there
It would be interesting to know who asked you and what
information they gave you at that time?

The, a nurse came in to ask me, I think, and then she
told me about the POP study, what it was about. So it was about like trying to
un-, not thin the bones, stop, stop the steroids from thinning the bones. And
then, yes

Yes. They told me there was three drugs that they were
testing and that I was going to be randomised to one of them. And then, from
then I’d have to take that drug for a year. But I could stop if I wanted to.

So they give you an opportunity to withdraw?

Yes.

So there were three drugs?

Yes, I think three.

Did they explain what the drugs were or, if they’d
been trialed before?

They’d been trialing them for like five years, I
think. And then, yes, they just explained that, what the different drugs were,
but they didn’t exactly say properly what they were. But they were just like to
try and help test the thinning of the bone.

Did they use a term like placebo at all?

Yes, they said one of them might be a placebo. But
you’re not going to be told.

Did it bother you that you might have a placebo at
all?

Not really, no.

Did you, if you were to explain what, what a placebo
is, what did you understand about that?

it’s a drug but it’s not really a drug, so it doesn’t
do anything. But it’s just to see if your mind makes, can change stuff.

And, but that, you, were you happy with that; were
there any concerns about, you know, not knowing which drug?

Not really.

No?

No. No, I’m fine really.

You were fine? And, and you, again what was the
purpose of the actual trial itself?

To like try to stop
the thinning of the bone from people who take steroids.