Yeah because the, the main tablets I was on, the, my consultant just put me on them. You know, hes a consultant and theres, as far as I’m concerned he knew, you know, he knows what’s best. And he said that, you know, I just, you know, go with them and see how that affected me. When I got to my next appointment but the, the anti-inflammatories I was given because I, the doctor had already put me on anti-inflammatories and to me they didn’t help. They weren’t helping me.

So the consultant gave me a list and I had to try one lot for 3 months, 3 weeks, then another lot for 3 weeks and then try another one. But they, the ones that the consultant put me on suited me and when I come off, ‘cos I had, you had to go on the for 3, 3 weeks then you had to come off it was 3 days before you started another lot, presumably to get them out of your system.

And I did say to my husband that they’re, the Meloxicam which is, they’d, they’d kept everything under control so I wanted to stay on those ones and I was a bit worried I, yeah, I was a bit worried about ‘Do I ring up the consultant and say, you know, I’m sorry but I haven’t done what you’ve asked me to do because I prefer these ones. And when I went back in there I was a bit sheepish and I did say to him, you know, ‘That list you gave me, I didn’t, I didn’t bother with the other ones. I found these ones and when I came off them I found I was a lot worse. So I said to my doctor, ‘Is it all right if I stick with these?’ And my doctor was like, ‘Well, it’s, you know, it’s you, so yeah. Yeah. And that, you know, so in that aspect, I did, I did have control.

Only ‘cos I said to him they, they did affect my asthma and I know this, and the pharmacist did say to me, you know, ‘cos it’s my local pharmacist he did say to me, ‘These will affect your asthma. And I, and they did and that’s why I’ve gone on to ‘ dose. They suit me, they don’t give me any side-effects other than that, so I’d rather stick to something that I’m, you know, that I’ve, I’m used to kind of thing.

And you say you take anti-inflammatories every day?

Yes.

But it still swells up in the evening?

It has all the time I’ve been taking them, whether they would be worse without the inflammatory I don’t know.

Have you tried leaving them off?

No. I’m reluctant to leave them off because
I’m not suggesting you do.

[Laughs] No but, being, you know, obviously you don’t know the cond, it’s like the tablets I’m taking, you don’t really know what condition you would be in if you weren’t taking them. You could be a lot worse. Even though you don’t feel that much better by taking them. So you’re reluctant to leave them off, any, any of them, not that I would but, the inflammatory ones I’m taking, as I say, I don’t really know if they improve the situation or not.

And you, so you’re not taking anti-inflammatories?

No. No. A lot of people find that strange but to be honest they, they don’t really make an awful lot of difference. If I’m not flaring then I don’t need them. I used to, I used to take over the counter stuff. This is a long time before I was on methotrexate, I used to take oh I’ve forgotten the name of it, brufen, I couldn’t think of it. And that was good because with me it’s not just the joints, it’s the muscles as well and it just has a good muscle relaxant. So, believe it or not, I used to take two of those an hour before I used to go to the gym, so I’d loosen up my muscles and just build up my muscles without putting any strain, and that actually worked very well.

But it got to the stage where I wasn’t any different whether I was taking them or not taking them. So I thought, ‘Why take something if you can have the same effect now that you’re body’s got into the idea that to exercise is, is good?’ I don’t get any pain if I do a workout. I don’t ever feel, even if I’ve been flaring I don’t ever feel any tight muscles afterwards. So, you know, I know what I can do and what I can’t do and if I’m, I am flaring I just cut out whatever whichever joints are affected the worst and just work, work out around, around that.

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.

And then they’d put me on Indometacin which I’m still on now, which is I think the best drug for me. I don’t know how it works for other people but it got rid of the stiffness, it got rid of the swollen joints and I could get up in the morning and do whatever I wanted straight away. It got rid of all of that. It wasn’t so good of getting rid of the sort of, the general day-to-day pain. I still get localised joint problems but it took away all those sort of feelings of, ‘Oh, I can’t do it today. And that was great.

But I wish I’d had known about Indometacin actually [Laughs] that’s a great drug, I wish I’d have known about that. I suppose I couldn’t have it when I was very young but I’m, I’m glad that I found out about it and I wish I’d of sort of been on in all that time because I might have been able to get to school every day and just had a, a bit more fun at that time.

No, I, I’m still on Indometacin right now. It’s my anti-inflammatory. It’s probably something that I’ll always have. It’s the drug that I believe gets me up in the morning. It means that I can get up and feel great. I would never want to come off that unless it was posing a serious health risk in which case I would be deeply saddened because it does quite a lot for me. And I could probably come off, I don’t know if I could come off my strong pain killers at night. It depends on the conditions. In this country with the humid, the humidity the way it is I don’t think I could sleep at night with my arms being, they’re quite restless. Even though they’re in splints they get quite uncomfortable. So, yeah, I stay on that and I probably will stay on that as well. It’s great. It’s an anti-inflammatory it works better than anything else I’ve tried.

I take a slow release diclofenac and the folic acid.

Is that an anti-inflammatory?

That’s an anti-inflammatory, yeah, yeah. And I have had periods where I’ve taken that, I take that at nighttime and that’s, I think it takes about 14 hours to slow release. And when it’s been nasty, grumpy, joints then I would take some four hourly diclofenac during the day but I haven’t needed that for awhile and I’ve had lots of different anti-inflammatories, some have suited me and some haven’t but diclofenac, it really does suit me so;

Can you tell me about the slow release anti-inflammatories that you’ve had?

Yep, well I didn’t have them when my first, when my rheumatoid was diagnosed to begin with. So you had the usual four-hour spaces between the drugs and it wasn’t nearly as effective, bearing in mind the problem that a lot of rheumatoids have of morning stiffness. If you take a slow release drug they take about 14 hours to dissolve completely, I think, and so you take them last thing at night, always with milk or food, and then they’re popping away very nicely all night and cover you for morning stiffness bit, and start to wear off usually sort of, early to middle afternoon and, if you’re, if you’re ESR is up, you can feel it where it wearing off.

But theres no reason why you couldn’t take a smaller strength pill, to tide you over then, to when you take your next slow release. I’m in such a controlled state now that my ESR is very low, which I check it on my card that I carry around with me, which I like having and so I’m not aware of the drug wearing off at all. Having said that, it makes you feel, perhaps you would like to come off the drugs and now and again I say to my rheumatologist, ‘oh do think I should, could come off the drugs?’ And he says ‘no, you are controlled on these drugs and this is how it’s going to be and I accept that completely;

And yes the drugs, the anti-inflammatories, I feel are very significant in the control of the pain in a rheumatoid, a great innovation drug for the drug control, the pain control;

And how, when you were working, you know, how did that affect, how you got through the day?

Yes, well I did begin to feel it wearing off, you know, as I say, middle, beginning to middle of the afternoon, but the majority of my working day, my heavy, you know if I was doing lifting and was coming to an end then, and most of the time I could manage at home just doing sort of, like domesticy things when I got home, I could manage until I took the next slow release drug but if I didn’t, I did have drugs there, small strength capsules to take if, if I was having a, a more uncomfortable period. But for the time being those days are over, so but you never know with rheumatoid, you just enjoy the good bits [laugh].

So therefore I just stay on the basic anti-inflammatories with painkillers occasionally as well.

So how do you feel about taking those long term?

I’m just sort of resigned to it I suppose. I don’t have as yet any side effects from the one that I take. So I’m just OK really taking, it doesn’t, it doesn’t have a massive amount of effect, it doesn’t seem to have a massive amount of effect, taking it but if I leave it, if I don’t take it I can, I can certainly tell so it probably has more effect than I think. I try to take the minimum I can get away with really because of the warnings they’ve given me about stomach damage from the anti-inflammatories. So, although I’m sort of prescribed the full dose of it I take a little less unless I have, I’m having a bad day and then I, I know that I can bump it up a little bit, take a bit more.

Which one is it?

It’s the di, Diclofenac. Yeah.

No I don’t have any side effects from that tablet no, I think that you can get indigestion. I think is, is an indication that it might be affecting the lining of your stomach but I’ve taken them for about 15 years now without, without them having any affect as yet on me.

Well eventually I got sent back to the same hospital that I’d originally been to, in fact I was in quite a state at the time and they sorted me out with methotrexate. And they also realised that I had an ulcer from the anti-inflammatories that I had been taking, which also got sorted out.

It’s gone, yeah. That was purely the anti-inflammatories caused that. But I didn’t know I had it. I didn’t have any reason to think I had but apparently the anti-inflammatories that cause it also hide the symptoms of it. So you probably don’t know you’ve got it. Well most people don’ t know realise they’ve got it until they actually start to bleed. But I was quite lucky that they found that out beforehand.

But you’re back onto anti-inflammatories again now?

Yeah, but I’m also taking a tablet to help the lining of your stomach. Another tablet [laughs]. So hopefully that won’t happen again.

And I tried a couple of herbal things for me stomach at the time to try and settle me stomach down, I had a lot of indigestion with the Voltarol and things like that, but I tried to, the anti-inflammatories and the actual, to help me with my digestion and problems with me stomach, but it didn’t seem to work at all. I think, I think changing my diet and eating more healthily has sort of helped me more that way than herbal remedies have.

How long did you try them for?

Oh a few months, quite a few months, but they didn’t seem to work at all.

Have you ever had an MRI scan done?

Is that the one where they turn you around on the?

They put you in sort of more like a magnetic tunnel.

Yep I’ve had that one yeah, yeah I had that cos I had a lot, I had trouble with me stomach and they put in that, that’s right yeah I had that one yeah.

And how did you find that?

It was a bit worrying at the time because I did have a lot of trouble with me stomach, a lot of pain and there was bleeding and you think the worst like, you thinking you know it mind sort of, thinks all sorts of stuff and when I went in there were a lot of really ill people in there who were obviously had cancer or whatever like, and it does make you feel you know, it worries you a bit. But they were pretty good there like, I went in and it was all clear so you know what I mean it was just, I think it was just irri, the actual, the bowel was actually irritated and the actual, well all the way down into the bowel was just irritated by the different anti-inflammatories I was taking, and the medication, so they just sort of varied it, the dosage and what have you and it cleared up after a while.

As I say I’ve been very lucky I think, that I’ve found the right treatment when I’ve needed it. I think if I’d have stayed on the, the anti-inflammatories, if the other, other treatments hadn’t been available I don’t think I would have coped so well because they didn’t have the effect on the problems and they certainly didn’t make the swellings go down or stop the pain so I’ve been lucky that I’ve found the right treatment when I’ve needed it;

When you were on the anti-inflammatories were you having to take a lot of painkillers?

Yes. He first lot of anti-inflammatories I had, I can’t remember the, I think it was Voltarol, I had very bad chest pains I was very worried. I thought, I thought I was having a heart attack. I mean I don’t know what a heart attack is like but I had very bad chest pains and also my arms were very bad, the, they were, the pain was in my arms as well and, and apparently that was a side effect and I didn’t like that at all. So I wasn’t on Voltarol for very long. But the anti-inflammatories not very good for me.

Did they put you on a different type of anti-inflammatory?

I’ve been on several in the past which I can’t remember the names of but I have been on several. I understand theres loads of them that you can try. But as soon as I saw the rheumatologist he said Gold injections so that was it, straight onto the Gold.

And you didn’t have to carry on taking the anti-inflammatories;

No, no, no.

Yes early on the consultant who put me on the Gold injections also prescribed Indocid and I did find that difficult to take it, it was all right as long as I’m, I remember to eat enough but if I occasionally didn’t have a lot to eat and, and took the tablet it made me very, very sick and headachy and I think really I wish had, had not taken that particular drug for, for as long as I did because I coped with that several times, that, that reaction and I think I should have been more sensible and reported that and had, had a change to that drug earlier than I did;

I didn’t realise it was going to get worse, I think, I was living in cloud cuckoo land with it really, I was full of optimism that it was only a temporary thing and physiotherapy and creams and things would help, and the creams, the creams do help and I don’t know whether, am I allowed to mention the creams that I’ve found helpful? Well at one point the rheumatism spread from, as well as having it on the knee and in the ankle, and I’ve got flat feet and that’s part of the reason I have trouble with my ankle, I’ve got six areas altogether that needed cream, and Ibulieve Strong, you’re not allowed to use more than half an inch, but by using Movelat, which you can use six inches of, I’ve got six areas and I was able to put an inch underneath each of my feet, an inch in each ankle and then an inch for each knee, so that worked, and at the moment I’m only having to use, I’ve gone back on the Ibulieve because the knee was quite bad and I thought well I might as well have the stronger one. So I’m only using it on those two areas, so I can always go back to the Movelat if I need to later on, but I’m able to get Movelat on prescription which is great.

And how, how do they feel once you’ve put the cream in?

Oh it, it definitely, definitely helps. I think, I think my main problem is really just mobility because as the day goes on I definitely get better and I have to go out quite early in the morning.

But the worst, the worst, the worst problem was when it was when it was painful underneath my feet, I didn’t like that, but the cream, the Movelat cream helped me with that so and it didn’t stay indefinitely which is good.