So that’s really where it started, yeah. Then I was it was, again, confirmed by this hospital, they did the usual tests and I got started on some medication oh, though the problem there was that becauseno, no, sorry, there’s a mistake there the rheumatoid lungs didn’t really weren’t really confirmed until about two months after that, even though they were aware that there was a lot of noise going on in my chest, which I wasn’t aware of.

So, initially, I got started on some medication which was started by this this chap that I know but it didn’t suit me, I kept on it for about three months, but I was really quite ill with it. And so it was stopped when I went to the NHS hospital, because, simply I said, you know, I was… I’m having horrendous side effects. And it wasn’t very long after that that I was diagnosed with the rheumatoid lung and, of course, that created more problems then, because the drugs I have for the rheumatoid, I can’t have, because they conflict with the lung problem. So it has put me into the complex category from day one, which I absolutely hate.

So is your treatment sorted out, such that you don’t have side effects now?

Therethere was, yeah, I went through a few processes there, I had another drug which was equally unpleasant and that had to be stopped and then I spent possibly a year, just being covered by steroids. So, you know, you can go back to the days when youyou knew about it. And the steroids caused havoc, but the other drugs also caused havoc with my digestive system and I lost a tremendous amount of weight, in fact, I haven’t put any weight on, I’ve only lost weight since I was on steroids and lots of weight, you know, I was, oh, sixty-six kilos when I started, and I’m about fifty, fifty-one now, kilos. It’s fairly stable at the moment, but what I’m on is not affecting me either now.

And what were the unpleasant experiences that you had on the drugs as well as the weight loss?

Vomiting and diarrhoea.

I’m just interested if there’s a couple of tips

Right.

coping strategies, advice around anything that we’ve talked about that you would give to other people?

Well, Iyeah, I think in relationship to the health issues, you know, it’s a minefield that, you’reyou’re noteven I who have got experience is not really getting through that very well, but you do need a really, really good GP who, you know, is your advocate really. The person that will sort things out clinically, medically for you, and if you haven’t got one, then you need to find one and if that means that you need to go to a GP up the road and say, I want to sign on, then that’s what you do, because, without a good GP you really are lost, you can’t get through to, someyou know, it’s unfair that I have four consultants looking after me, and I have to say that they’rethat, there are two of them that are really, really easy to communicate with, you know, are not defensive in any way, but consultants, like all of us, they’re just human beings and they take into that profession their baggage unfortunately and the people that lose out are the patients, because when you are a patient you’re very vulnerable and you always have to remember that, because when you go in you’re expectyou’re expectyou’re expecting something.

And if it’s not forth coming it just leaves you then to have to try and work out yourself and that’s why a good GP would be very useful for that. If they don’tif the consultants don’t give you the answers, go to your GP and he will be able to help you.

So I’m, kind of, interested in your, kind of, self-identity, if you like, because you were someone who was very fit into your seventies and then all of a sudden you find yourself in this, kind of, protracted business with the Health Service.

Yes.

And I, kind of, wonder how thathow thathow that affected you?

Well I think I was angry, I was angry that my for a start, that my health had let me down and that everything I did and thought I would be going to continue doing I can’t do and I was and I was angry with my husband for having a stroke, there’s noit’s not rational, but I was, you know, how dare you? How dare you have something that demands more help from me than I’m able to give? So we, you know, because I couldn’t look after him, I we got carers in for a bit and that’s a minefield that I don’t want to go into, you know, you pay out for these people and they’re just it’s horrible. I would say that even today, two years later, I haven’t come to terms with the rheumatoid, it has stopped everything that I did, absolutely everything. I used to sculpt and, paint, do lots of things like that, but with my hands, they’re just, you know, just they’re just too painful, I can’t lift for any length of time now because of the pain in my wrists. I used to walk, real, you know, proper hiking stuff and loved, absolutely adored it, I can’t do that now, you know, because my lungs make me very breathless after I’ve been walking for, you know.

Well I actually had some lung tests done just the other day, and it’s a six minute walk, among other things, that you do there and I was I was pretty jiggered at the end of the six minutes, you know.

So did the hospital try you on a different DMARD or they didn’t?

Well, no, what happened was that they decided that, you know, yes, I’d got this rheumatoid lung, so rheumatology said, well, we won’t have anything to do with you, err, we’ll be guided by what the chest physician says.

So this rheumatoid lung, is that a separate condition or is it part of

No, it’s part of it, yeah.

It’s part of it.

So if I have, my understanding is, if I have flares and it becomes quite active, then the inflammatory process takes place in the lungs as well.

Okay.

Which means that they become more and more fibrosed.

Right.

Yeah.

So is your treatment sorted out, such that you don’t have side effects now?

Therethere was, yeah, I went through a few processes there, I had another drug which was equally unpleasant and that had to be stopped and then I spent possibly a year, err, just being covered by steroids. So, you know, you can go back to the days when youyou knew about it. And the steroids caused havoc, but the other drugs also caused havoc with my digestive system and I lost a tremendous amount of weight, in fact, I haven’t put any weight on, I’ve only lost weight since I was on steroids and lots of weight, you know, I was, oh, sixty-six kilos when I started, and I’m about fifty, fifty-one now, kilos. Err, it’s fairly stable at the moment, but what I’m on is not affecting me either now.

And you’ve been up and down in that and you’ve tried these things out, then you have a better idea, I’m if you can say I’m only two years old, I’m still a fairly new rheumatoid patient and in the first year, except for two lots of drugs that I persevered with as long as possible, I had numerous side effects, which necessitated me ending up going to see a third consultant which was a colorectal surgeon, because everybody was making issues about weight.

Then I changed consultant, rheumatology consultant and she went through all the first bits and then she started me on a drug which I was really hopeful would work, because, according to h yes I was having flares, et cetera, and that was the thing that they were supposed to be bringing under control, but if twelve months later I’ve still got the flares and I’ve had some very highs and lows with them and they limit the drug the condition itself is limiting me more and more and more, I’m aware of that after two years, that frightens me, that actually really frightens me, because I thought it progressed, but slow except if you were one of these very unlucky people who just kept progressing and nobody has actually told me I keep progressing and that the drugs won’t work, maybe they don’t do that, maybe they wouldn’t tell you, I don’t really know, I don’t nobody would tell a patient that, but because I’m stuck with knowledge and being a patient, I’m in a very, very difficult position.

And I want somebody to tell me that this is not going to continue to progress, it’s not going to be a fast progression, you know, that, my lungs are not a mortality of three to five years, and, yeah, there are drugs and we will give them to you and we will bring you under control, and nobody has done that.

So, you know, Iit make me feels that it’s not really worth going to consultants, the GP is wonderful, I can’t find one thing wrong with him.