Interview 13

Age at interview: 42

Age at diagnosis: 17

Brief Outline:

Diagnosed '78 after various joint pains. Knee synovectomy age 18; then 8 years quite symptom free; since RA in many joints. Some steroid pulses/joint injections. Now Gold injected 50mg/month, Meloxicam 15mg/day & Coproxamol if required. Thumb fusion operation.

Background:

Full time surveyor/manager, married with 3 children. Family history of RA.

Has learnt to take painkillers before doing something strenuous to counteract the pain before it...

'Cos as I say, I just have to be careful, try and plan my days out as to what I do and if I know I've got a particular type of work like that then I perhaps dose myself up on a few painkillers just to get me over that, that sort of initial hurdle really.  

But do you then feel the affects sort of the next day or?

Not normally no, no. It's the painkillers normally sort of, if I know that I'm gonna do that, I sort of perhaps take them perhaps for a day if I know I've got something really sort of straining to do. But I don't really feel anything else after that. The painkillers wear off and you're fine. But you know if you don't take them, you are gonna seem to suffer. Obviously with the strain of whatever else really.  

I also sort of have now got to that stage where I know what's going to aggravate it as well. So I'm able to take precautions that way so I'm going to do something that's to me is aggressive to the joints I can take a few more painkillers or something like that and get myself sort of dosed up and I'm able to sort of cope with sort of most situations quite sensibly and helpful to myself sort of thing. And so that's, that's some benefit at least. At least I do understand, understand it a lot more sort of thing. I mean obviously than you did in the, the first case.

Describes the effect of not taking his anti-inflammatory medica.

I take Meloxicam on a daily basis and I supplement that just with co-proxamols as pain killers as and when and I don't really use them that much, the pain killers, but sometimes if you forget to take the Meloxicam you can certainly feel the difference the next day. So, but it's really helped I think.

And I take two 7 1/2mg per day and that just dampens everything down really. And that's what's noticeable in, if you miss that there is a physical difference the next day in your mobility and it does pay to take them.

Had painful flare ups whilst waiting for DMARDs to kick in and tried different ones before...

At, initially it really didn't bother me too much. Certainly later on it became more perhaps of a nightmare than perhaps anything else where we just couldn't get the medication right, moving from one type of medication to another, finding that it wasn't suitable for me and really not obviously getting any benefit from the help of the medication and times were quite low at times where you just didn't feel that you were really getting anywhere with it, it was just, just a hard slog against the, the sort of the pain all the time.

But we sort of found this medication probably, probably about 7 years, 6, 7 years ago that I'm on now and it's made a huge, huge difference to me. As I say the peaks and troughs of the, the problem's now gone. I know I've got it and I can really cope with it a lot better than I could before.  

Yeah, sometimes you were really quite you know quite bad sort of thing and obviously there was a period of time when you'd got to allow one medication to sort of really pass out of you before the next sort of treatment started and obviously with no protection at all you were obviously prone to suffer and if you were, you know, having one of those sort of flare-ups at that particular time, then obviously it was, it just felt obviously much much worse than perhaps it was really. And it was a bit sort of devastating to, you know, to be told at times, 'well I'm sorry there's, you know, there's nothing we can do for you just at this moment in time. You've just gotta, you've just gotta wait really and wait for the next, sort of course of treatment.'

How long did you have to wait, is there a sort of a set time to let one go before you can start the next?

I can't remember exactly but I mean, but there certainly seems to be some kind of a delay between each sort of treatment but I don't whether they're different for the different drugs or quite what, but there's certainly a distinct sort of a settling down period before, you know, something new was started. And you just really had to put up with it. And that wasn't sort of very nice really at times, certainly if you didn't know quite, you know would the next thing that they put you on be exactly the same and you'd be back in the situation again in sort of 6 months or 12 months time. It was a long sort of drawn out process, to get where we are today, sort of, you know, really the best part of sort of 15 years perhaps, something like that to reach a point in time, where everyone seems to be happy and the drug itself seems to be, you know the best that we can be looking for really, at this time. 

Steroid pulses helped him get over a flare but the effects didn't last long.

But the pulse steroids do, do, do work, they certainly do make a difference and sometimes that's just what you need it seems sometimes when there's been a flare-up just to, either to take the edge off of it and bring it back under control sometimes it really does just put you back sort of, you know, back to where you were straight away but it does tend to wear off quite quickly.

So one, two to three days it was, sometimes it lasted a bit longer than that?

Sometimes but not much more than perhaps a week. A week I think would really be pushing it. Two to three days is normally the about the, the limit of its, you know, its most usefulness anyway but then it deteriorates quite quickly.

And are they painful to have, the injections?

They're not painful at all, no. They're sort of given to you by a sort of drip. The only problem being is that it is a, it's a long process, it's normally a morning in hospital sort of allowing this to drip into your system sort of thing. So not painful but a bit time consuming and a bit awkward to, to programme in at times.

Especially if it's only going to last for 2 to 3 days.

It is, yeah. It is if it's sort of, yeah, on that sort of short term basis but sometimes it's certainly just what you need to kick start everything back. You know, that, that does appear to be one of the problems really that we have is that things don't always work the same for each person, things don't always work the same each time you take them. Sometimes the circumstances seem to change and you don't get the same result. Sometimes you do, sometimes you don't. I think it'd be a lot easier obviously if everything was shoe horned into a nice little box and yes if you take this you will, for X amount, you know period of time and you will definitely be fine and everything, but everyone seems to behave differently and even individually you seem to get different help benefits from, from these drugs each time you take them. You don't get always the, exactly the same result.

He finds it interesting to see the progression of the RA by having regular x-rays of his hands...

Yeah, certainly X-rays. I don't think I've had an ultrasound but I've certainly relatively regularly have X-rays just as a means to find out where the sort of the feet and the hands are, how they're really sort of progressing or sort of deteriorating really perhaps in a way, probably once a year perhaps. Probably now even less than that because I'm only having the six monthly inspections so probably perhaps go a couple of years before you, you have them. But they do, they do keep monitoring that side of things just to see how they are.

Does it bother you having sort of that regular X-rays, that many X-rays?

Not really because it's interesting obviously to, to see the state of, you know, what, what is actually obviously going on. I mean you don't, you can't really feel the deterioration that you can see obviously on the x-rays and obviously you know that things are hurting but you can't actually see the way that things are changing and the joint's deteriorating that much so it is interesting really in that respect just to, physically see what's going on. It may not be quite so nice to know what's going on but you do actually, you know, see and can understand a little bit more.

Insoles, special shoes and visits to the podiatrist to remove hard skin on his feet have all been...

I see a podiatrist as well as sort of that kind of a department. I've got the shoes on at this moment, I do wear  insoles in some of my sort of trainers and things like that, but these particular pair of shoes are hospital type shoes, with a special insole and I'm obviously looked after quite well that way and that was a, a huge help, a huge help really in a way. 

I been sort of suffering quite, quite badly with the feet   for a number of years really before somebody at one of the clinics  I was asked if I, I was attending that particular type of clinic and I said I wasn't and I was quickly put there and it's been a huge difference. It's so much nicer. It really is, it's made a big difference.

I've certainly can take sort of my normal shoes if necessary along and have insoles made to sort of suit those, I have to wear at work, protective shoes with sort of steel toe caps and mid-sole protectors as well in case you stand on nails or have any thing drop on your foot as well, so they've made insoles for those as well. But they're very heavy so I've got these purpose made shoes which are very light but have also got the ability to take the insole within like the sole of the shoe and yes it's make a huge, huge difference. 

So what does the podiatrist do for you?

She helps me with the soles of my feet more than anything else. I've, I've lost the protective coating around the joints on the toes so I'm actually sort of really walking on the bones and that then produces hard skin where you're putting more pressure on that sort of that, that point. So she looks after the hard skin and the sort of callouses etc that occur from that so that's really nice, it's really, really good. You certainly know when you're getting towards the end of your six-week period and you certainly need to go and see her. And it's like, it's like a new pair of feet when you come out, it really makes a tremendous difference.

And as I say the thing with my feet, you know, the podiatrist, it's worth a million pounds sort of thing when you come out of it, the way, you know, the way it really does make you feel it's so, so different, so, so different. And it makes you wonder at times how you, you survived before without having that done in a way, 'cos I did go for quite a period of years with, without really perhaps that being sort of spotted or perhaps without me, myself sort of making that an issue. But now I know obviously that it's there and I can see the benefits of it, I mean, if you had to pay for it, then you would. It really is something not to miss out on. 

Complains that routine appointments are often cancelled but he has direct access to the clinic...

In the main, it's pretty good. I mean if I need to  if I need to get into the hospital quickly, I've got pretty much a direct route straight through to the hospital  that will get in sort of quickly. I've got sort of direct contact with like the practice nurse there for the clinic and you know if I need to I can obviously talk to her as well. I've not really got that much of a problem that way.

Certainly  my sort of routine appointments and checkups, times and times sort of slip from one appointment to another because of  commitments at the hospital, I doubt very much if now I'm on these sort of six monthly check ups, if I'm ever seen at the time when I first book myself in for that appointment, they're always cancelled for one reason or another or it gets put back. But  I do have access if I need it and as I say really at this moment in time, I don't really need it, I'm quite, quite good so you know, they are really just a, just a top up call more than anything else, in a way, just to see how things are progressing but  it is a busy department or a busy clinic, the, you know, the rheumatoid clinic, so'

So when you're actually get there, do you have to wait long for your appointment times or'?

Not really, no, things, things are normally pretty good. Things move quite quickly there so the only perhaps gripe that I've got is the fact that nine times out of ten, the appointment, when you make it for the next routine check-up will be cancelled and sometimes it can be cancelled a couple of times before you're seen again, for whatever reason, you never get to know. But that's really my only gripe.

Acupuncture was very helpful.

Yeah, I've, I've  was under the physiotherapist recently and I'd got problems with my shoulder they wanted to try and keep some mobility in the shoulder and I ended up having some the needle, acupuncture, I had some acupuncture, and I found that was very, very, helpful. They also gave me a few sort of exercises as well that I could do as and when I sort of needed to do perhaps. But  we've not really gone on that to, sort of too far really, I had a spell for perhaps for about six, six or seven months with  the acupuncture and things seemed to improve that much that they decided that that was fine, I could sort of stop it.

So would you be happy to have acupuncture again? 

I would yes, yes. I can certainly see the benefits of that, in I mean you know if what I've seen in that one area of, with the working on my shoulder, is anything to go by for the rest of the body, then I'd be more than happy to have it would, if it was a help and it was suggested that wouldn't be a problem, whatsoever.

Would you consider going privately to an acupuncturist?

Yes, if you know, if it needed, needed that certainly. I think the benefits that they, they bring you know, you, you can't put a price on as such. 

He tries to keep mobile by moving around the office and by gardening.

I certainly know the benefits of doing the exercises. I wouldn't say that I'm motivated to do them at all but I know the benefits of keeping everything mobile and you know, I, I do tend to, to do that specifically like at work  you know, get up and go down the office to do a bit of photocopying and rather than perhaps do it all in one go or saving it up and doing it in one go. Then I'll, I'll make sure that I get up and go down a few times.

Just keep myself moving and I do find that does tend to be a lot better, to keep that mobility there. And certainly I like to try and move around in the summer and potter around do a bit of gardening and things like that. And I find that the more you can move, move around, the better, again, that, that helps with you sort of thing. It does makes you a lot more mobile and the joints aren't as stiff and awkward as they can be at times. 

Pain can make him depressed and 'grumpy' at times, which can affect relationships with other people.

It certainly can affect the relationship at times when certainly at times you do feel in pain, and you do become grumpy and you do tend to upset people by your behaviour and the things that you say at times purely because of the way that you're feeling, likewise at times certainly not now, but certainly in the process of it all, sort of coming out with the arthritis, there have been times when you've really sort of felt at a loss as to what to do, none of the treatments seem to be working, you can't find that happy medium and you're going round and round in sort of circles and yeah, you do tend to get very, very low and it obviously does have a knock on effect to your partner and the children, too. 

Obviously you do take your anger and your pain out on other people unfortunately at times, but as I say, as luck would have it now we've seemed to have found sort of a medication for me that works and so really that's not too much of a problem. And I know you do at times, you know, you do get that, that time when things are sort of hurting and there's pressures to do things and you tend to snap perhaps and it is really to do with the, the arthritis more than anything else, perhaps in a way. But they tend to realise that as well and do give you a little bit of slack with it all but  yeah it is a problem at times to be fair. 

At his job interview he didn't tell them about his arthritis, but usually he found it easier to...

No there's really nobody that I've sort of not sort of not told. Work as I say  originally everything happened while I worked for one particular company. I then joined another company, after I was made redundant, and I didn't actually say anything about the arthritis at that particular time at the interviews and I did feel that when I started to sort of talk about it once I'd started work there, that they perhaps didn't feel, perhaps as happy with it as I perhaps assumed that they would do.

I suppose I was spoilt by the fact that everything else happened with one company, they actually see, see it develop in me and really sort of took it for granted and knew what was going on, where perhaps somebody else didn't, which is why I tended to become more open and will, would discuss it with people rather than perhaps let them wonder why I'm struggling to do something that they can't understand that I can't sort of you know, carry out quite easily. I've sort of found it easier to, sort of cope with things that way by sort of being honest and you know saying, rather than try to put it behind me and just sort of try to soldier on.  

He tried many diets but none of them helped his arthritis.

I had a friend who suffered with rheumatoid arthritis as well and she was a great believer in food, in the types of food that you eat as to its benefits with rheumatoid arthritis and she produced many books and forced me to read them and change my diet but it didn't work for me I'm afraid, I had no success whatsoever, but for her it was a great, great success, but for me, I just couldn't get to grips with it. It, it didn't, didn't seem to have any benefits to me, whatsoever. But she, she certainly found that it was a real, you know, boon to her.

There were different, different sorts of diets where you sort of go like on perhaps a fish type based background and things like that, or certain types of vegetables. There was a whole mish mash of different things that, that came out and were recommended that you could try them until you found one that was suitable for you. But none of the ones that I ever tried have had any success and I gave that up as a bad [laughs] job to be fair.

He wears various splints when necessary, depending on what he is doing.

The splints that I, I wear, I've got a number of different types of splints for sort of different activities or different things, how I use them really as and when I have to use them. I don't like to use the, the things if I can. If I can get away with using a proper hand and you know to doing it myself then I'll do it.

But sometimes you need to just take that little bit of precaution and safety, on the joints and splints do give you that sort of stability there and I've, you know, again, depending on what I'm doing, I'll think about whether I think it's worthwhile wearing a splint just to you know, give me that added protection, rather do that than twist a joint or something like that and know that I'm gonna be suffering with that problem for you know a considerable amount of time. So they're very good. They're very approachable. 

You say you got different ones for different things, what..?

Yeah, I've got a thumb splint. I had a lot of problems with the thumb and in the end they fused the joint together to give me a, a more stable sort of joint that I can actually now grip things better. I've got to, say a thumb splint that fits purely on that, that gives it a little bit of support, it's sometimes does tend to ache and things like that. I've got wrist splints.

Again when the wrist, the wrist does tend to ache at times and I've also got other ones that go further up the arm that give me a lot more support when I'm perhaps carry things and distributing the stress and strains elsewhere up your arms sort of things, so depending on what I'm doing, I've got something that I can wear that is comfortable and suitable perhaps for what I'm doing. So, yeah, you know, a man of many splints really.