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 theres, you know, theres 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 theres 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;

Yeah, once a week we’ve still got to do the methotrexate, originally she took it in tablets, she got brave enough to have that as an injection now. Originally that was done by the GP, but she has, I mean she has to have blood tests every month just to keep track of how stable the RA is but it, it got to a point where, you know, we were going for blood tests, going for these injections so in the end, I’ve, basically, I’ve sat through seeing how it’s done, give her the injection myself which I’m not the most popular of people at the time but it saves leaving the house really so. One day a week of being in the doghouse isn’t bad I suppose [laughing].

So you give her the injections?

Yes, I give her the injections, yeah.

How do you feel about that?

I was very nervous at first you just, I mean it, from the point of view of never being in the medical profession and giving injections it was, it was really daunting, and when you had to wear the gloves and cover your eyes, you don’t know what you’re getting involved in, it scares [laughs] you a little bit but it wasn’t too bad, I mean, it’s gotta go just under the skin not actually in the arm so you don’t have, you don’t have to find a vein or anything like that. Practice makes perfect, we’ll put it that way [laughs]. I can do it now nowadays quite quickly for a long, long time I think I was just as nervous as she was but like I said nowadays, I try and do it when she’s not expecting it, I wait until the soaps come on or something like that [laughs] so we’re alright now, we’re, we’re getting there [laughs] I’m still not popular when it comes round to giving the injections.

Methotrexate is disgusting stuff and to start with I couldn’t, I couldn’t actually take it, I’d sick it back up again. So and that was when I was on quite a low dose, because they started me on 7.5mgs and worked my way up to 25mgs per week.

So at one stage because of the, because I couldn’t take the methotrexate they were talking about injecting it intra-muscular and they said you know they could show me how to do this myself a bit like somebody with diabetes. Trying to get the mechanics of that actually going through the old hospital was a nightmare. They wouldn’t play ball basically and it would have meant a midwife having to come out from [name of another town] over to [name of local town] to administer the methotrexate and all sorts of stuff like that.

And then one day at the clinic, when I was waiting to see the consultant, there was a little old lady next to me, who was on methotrexate and I was telling her the problems I was having and she said, what you need to do is she said is have a massive fry up, you need to have bacon, eggs, sausage, fried bread the whole works she said, eat that and then take your methotrexate. So I did, and it stayed down. Now whether that works for anybody else I don’t know, but it certainly keeps the methotrexate down and eventually I was able to take the 25mgs a week orally and without the big fry up and, because I put two and half stone on because of the stopping smoking, so I thought I can’t keep this up [laughter]. But that’s initially how I managed to start taking the methotrexate and making it stay down.

The methitri, methotrexate which I take, I started to realise, it was about 12 months after I started taking them, but it was really when they increased the dosage I started to suffer from mouth ulcers and I tended to get a mouth ulcer I was having one at least once a week. Not little but quite big ones, quite sore ones in fact there was a period of time I had them down my throat, they were quite, they were very uncomfortable and very sore but I waited til I went to see the specialist to say, look I am, because they say to report mouth ulcers as one of the possible side effects, and I said I was experiencing them and they were very uncomfortable and they explained that the methotrexate apparently destroys certain goodness in the system that which causes the mouth ulcers so they increased my folic acid from one day a week, to one every day of the week so, and since then, touch wood, I haven’t had any mouth ulcers so they obviously it was that. But it was I didn’t mind them once a month but when they were coming every week it made things very uncomfortable.

But interestingly enough I’m actually working with the NPSA on a project, National Patient Safety Agency, on a project on methotrexate, at the moment. We’re looking at making it or, more information for people that make it a safer drug because I understand there was a lot confusion about the drug. I know people have taken it daily instead of weekly. I know all sorts of things and there’s no mon, there’s no actual structured monitoring in this country on methotrexate.

Some patients aren’t told. They just know they’ve got to have blood tests but they don’t know why. And I mean that’s all very well and good but if you’re having a drug that, once a week which that could potentially have serious side effects you need to take control of that, you need to think, ‘Well I don’t feel well, I’m not going to wait a month to have my bloods done. I think I ought to not take the drug today, go and have the bloods done, see what’s happening and take it forward. And that will cut down a lot of the problems.

I mean, I personally think methotrexate is probably one of the most safe drugs for rheumatoid arthritis but it can be made safer by education and consistency across the UK. And I think that is so important. If everybody knows what the side effects are, if everybody knows what to look for then there won’t be any problems with it. But it’s all this mismatch of information. And it’s not just at, from a rheumatology perspective, it’s if you get rushed to casualty, or you know, ‘Are you taking any medications?’ They, they just don’t know the implications and the, the interactions of things that you will get at a different point of treatment. And I think this, this is where the education falls down.

There are a lot of drugs I know that will raise the levels of methotrexate, which will raise the toxicit, toxic risks. But if that’s not goal posted or highlighted to you, I mean you as a patient could say, ‘All right, well while I’m taking this with methotrexate, I’d better have my bloods done every, every fortnight just to be on the safe side. But if it’s not pointed out, you know, a month is too late in some cases.

I was generally feeling unwell, as though I’d been drinking, not, feeling sleepy and dizzy basically. No other, but generally not feeling well in my head. Feeling, all the time feeling very, as though you’d been drinking. You didn’t feel focused at all. That was the only, the only one which I couldn’t handle and I was, I wasn’t on the maximum amount of medication at that time. I think I was on about 6 a day and it had to be, yeah it was 6, was it 6 a day? I’m just, I’m just confused about how many I was taking but I certainly wasn’t on the maximum, maximum dose and obviously I thought well if they’ve got to be increased theres no way I’m going to continue taking those. And I’d like sort of an alternative medication.

I was on medication for about 12 months. 12 months, I would think. But obviously not up to the, to the maximum amount that I had to take them, because of the fact of how I was feeling, it was probably after 2 or 3 months I did I was finding the, once I’d increased them from the starting, the 2 tablets per day up to about 6, is when I obviously I was a bit concerned and thought well I can’t go on as I was going on with the, with how I was feeling generally. I know with all medication you do get side effects but some you can tolerate and some, some you cannot. And I hate feeling, feeling sort of dizzy or heady, ‘cos you don’t just feel like, able to, your able to do anything.

So did you go back to your GP?

No, I didn’t go back to I did actually go to my GP but he didn’t say leave them off entirely. Just to carry on the dose I was, until I was referred, until I had my appointment at the at [hospital name]. And the lady I don’t know if she was a consultant, no she was the under-study for the consultant, I forget the lady’s name but, she said well I think we ought to try methotrexate and, as I said, I was reluctant to but I think on hindsight it was probably the best, best thing I did.