The back part, the MSK thing makes quite a significant difference to my lifestyle. Add it to the fact that, I don’t tolerate well any opioid products

Right.

from, you know, sort of Codeine onwards, every single side effect that there is I get, so I can’t take those. So painkillers are not much are no more use than anti-inflammatories as far as I’m concerned. But I can’t keep taking aspirins, and not allowed to take the ibuprofen and derivatives because they’re aspirin derived originally and cause the problems.

You’ve already mentioned that you have side effects with your drugs. And I was wondering if you could take me through the meds that you’re on, and the kind of, issues, any issues you’ve got with the medications that you…

Right…

…that you take.

…well, the side effects, I put on weight, I put on a lot of weight with the medication. I take mirtazapine, clozapine. Benzine, is it, benzine… I don’t know.

And do the, do the drugs help, help your symptoms at all, or is it just all…

Well, the…

…bad effects?

no, they have a knock on effect. The, they do help my symptoms just to, to some level. But they put, they have…they don’t help me in the respect that, they put on weight, I put on a lot of weight.

When I was diagnosed twenty-one years ago, the only things that were on the market was steroids. And I’d read, you know, I read quite a bit, and I read that steroids, you know, thethey knock out your organs, they knock out your liver after a certain time. So I refused to take them, so the doctor, you know, said, I should take Ibuprofen, which I tried and it made me sick. And then we had another talk and he said, well, aspirin is an anti-inflammatory as well as a painkiller, you know, take that. So I took aspirins. But no matter what when you’ve got rheumatoid arthritis pain, no matter what you take, you know, I’ve never taken anything that takes, you know, kills the pain.

And you were saying that your doctor thinks that you’ve got osteoarthritis rather than rheumatoid, do you want to talk me around that one?

Yeah. Itit’s because I don’t take medication, and I haven’t gone back to the doctors to you know, about my rheumatoid arthritis. I try and manage it myself. And you know, when I have gone back to them, you know, I do a lot of research on what drugs they offer me, and I decided that, you know, I could take this one drug. Recently they offered me diclofenac, I can’t pronounce these words, but another drug that they’ve linked to heart disease.

Called me in and said that, I’m going to send you for a densitrometry test. I said, What do I want a densitrometry test for? And he said, Really, you’ve had a lot of steroids.

Right.

He said, And there’s some new publications out on steroids and. He said, If you’ve had a certain amount, you really need a densitometry test.

Right.

So I went for a densitometry test and the result was that I’ve got osteoporosis it seems and it had attacked my hip, that’s the right hip and the right shoulder. So here I am with osteoporosis and I’m being treatment for the same. I am treated, of course, for the COPD. They took me into hospital and got rid of the, well, your body gets rid of the blood clots I know but they did, they, treatment wise, you know, obviously, organised it, they treated me with fragmin in there for the first time.

Right.

The clot buster, and I came out cured from the pulmonary embolism. I have, in actual fact, got all sorts wrong with me through the osteoporosis. I have a lot of problems with my hips and my legs going downwards and my right leg is giving me some trouble now, although it’s the left leg that’s got a DVT and my right leg has is going.

Are there any other issues with your medicines, that you’d like to talk about?

No, that is the major thing that struck me, when I was laying there, thinking is part of this problem diabetes related? I can’t I couldn’t figure that out. I mentioned it to the doctor, but he said he just passed it off, and I’m still not sure. I’d like clarification though to see if the diabetes is related, but I don’t think it is.

How many drugs, do you take, on a daily basis?

My wife will tell you that, she six, eight, ten and this one makes it eleven. Eleven different drugs. I’m not sure, I’m not sure how this will impinge on it, because it says, don’t touch the tablet, it’ll make your fingers blister. I think, if it makes my fingers blister, what’s it going to do to my inside?

Is this the one that’sthat’s done something to your tooth?

The ones I was doing, yeah, dropped out [laughs].

I had to put them on the gum, and let them dissolve on my gum.

And what are those tablets for?

This is for this, Meniere’s disease, syndrome.

Okay.

Yeah.

And are they effective?

It seems to take it away, yeah, it takes the dizziness away. As such, I’d say that if my teeth drop out, it’s better than having this sefeeling of wanting to vomit all the time, and this dizziness. The dizziness is terrible. It’s justthe room spinning, and you can’t focus. Instead of a still picture, it’s like a cinematograph, the old cinematograph, going round, and the pictures are just skipping in front of you, and, er, you can’t control anything, and then you want to be sick. It’slike violent sea sickness.

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 really forgetful now so a lot of things have happened that I should remember, I don’t remember. And I’m usually, my husband says to me, you know, Oh, you won’t remember anyway. And he’s quite right. I don’t remember lots and lots of things. Irritable. Bad tempered, I would say, more than normal.

Right.

And insecure in as much as I have to be, know everything that’s happening in my in my sort of situation so.

Right.

And if somebody says something to me then, as far as I’m concerned, it’s cast in stone. So.

Right.

Whereas before, you’d, you know, sort of be easy come easy go, now I have to know, you know I can probably say something three or four times to make sure that it’s right in my mind before I can go ahead with various things but.

Right. Right.

I think that’s possibly an effect of that because I didn’t used to be quite so precise but, as I say, I have to know specifically whatever is happening with regards to whatever.

Is that something you feel that has developed as a result of taking all these medications or?

I don’t know if it’s taking the medications or because of the condition. I’m not quite sure which it is. I think I think more the condition than, I think the irritability is possibly through one of the medications.

Right.

Because he did and, when I said to him I felt I was really aggressive, he did say, Well, that can be a side effect from the medication. So that that’s probably all really that I could say and, obviously, of course, the blood problems again because I wasn’t on iron tablets. I’ve had to go back onto those because of big problems that are now occurring with my blood again so.

Right. I see. Okay, and is that as a result of the medication you are taking or is that?

Yes, I think so.

Right.

My consultant did say he felt that maybe it was to do with that, which is why I’m having various tests now with the blood again so.

Right.

That could, you know, once they’ve decided definitely it could turn out to be because of that but, having said that, I’ve had to go now to see a haematologist.

Right.

Because something is wrong with the platelets again, which is what happened when I was really ill but, when I said to him did he think it was because of the medication, he didn’t think so.

I think you mentioned that it took a little while to get your epilepsy under control in terms of medication. But that’s under control now and.

Yeah, it is. It’s very good now and it’s totally under control, you know, no issues at all. As I say, it took a good two years to control the seizures until they stopped.

Right.

And, not only that, the medication was horrendous, I think the way it was, it was initially sort of put on a very high dose and gradually reduced it. And I was like a zombie sometimes.

Right and is that, I mean is that something that you raised and that was responded to or was it?

Yeah, yeah, and I think it was I think it was just trial and error and I think it was just trying different drugs, trying different combination of drugs, trying different dosages. I think, I don’t know if it was the combination but just trying to see what worked best for me and, you know, I think, I don’t really have a problem, you know, it’s just with that. It’s just very difficult to get the balance.

I think you mentioned there that you still have some side effects from your epilepsy medication or?

Yeah, I think one of the things is, I’m I think it is affects my thinking, to a certain extent, but I think it’s just memory is probably the worst one. I think it I don’t think I think as fast. I mean it’s partly, it’s hard to tell because I’m older and it’s just a natural progression. I don’t know if I told you this on the form but I’m almost fifty, but I suppose as you get older your memory does slow down a bit anyway but I’m sure I’m sure, because it was so dramatic when I first started on the drugs that I noticed it, that that it affected me. Whether that’s psychological or not, I personally think it’s affected me. It’s definitely affected my memory. I can’t remember things as I think I should do. I’m just completely wiped.

Right.

My wife will tell me things and just, and I just don’t remember them at all. And I don’t mean forgetfulness like, I can’t remember where I put the car keys. It’s just things that that I’ve done, that I just don’t have any recollection of.

Right.

So.

And is that something that you’ve shared with your GP or consultant or?

Yeah and, you know, and it’s just a case of, Yeah, but the drugs are working effectively. There’s not the seizures. And a couple of times, we’ve sort of revisited the drugs to see if anything that would be better. Not at the moment.

Okay.

It’s just a case of it’s a compromise.

I appreciate I’m asking you lots of questions [laughs].

No, I think quality of life is starting to slowly, especially in, this is going to make me sound like a right old fart, in the newer generation of doctors. I think they are appreciating that sometimes it’s better or that patients are allowed to have the choice.

And, when you go and you say, You’ve put me on this new drug and I feel like absolutely rubbish. They will listen and talk to you. Still some of the old school are like, Well, just keep, you know, bashing on it. We need, you need to have been on it for at least x number of months before we can make a judgement.

And that can be frustrating. But again, I think now that with the sort of research I’ve done, I will question why and will say, I’m not, I’m not taking this because it’s not making me feel good.

Because, at the end of the day, nobody knows what’s really the effects of these drugs for a lot of them, the long term effect, and I think people should be allowed the right to question why and what it is they’re taking.