He said, ‘And I’ll have to put you on a course of steroids”. So I said, “All right”. He said, “I want you to take 4 a day for, until it sort of goes off, you see”. So I started on this, what, the same day that I saw him. The next day the pain had gone completely and I thought, “Well, this is a miracle” the pain had just disappeared overnight. And anyway I had to go back and see him in, in two weeks so I told him the story and he said, “Yes, well that’s, that’s usual”.

He says, “But what we’ve got to try and do as soon as we’ve put you on them is get them off you as quick as possible. So, anyway, as time went on I was taking these steroids for nearly two years. I got it right down to one and then when I was on one I had to go up to three because the pain started to come on again and it was up and down like a yo-yo. So eventually I got it down to, well practically nothing.

And then when of course, as I said before, when I went on the steroids, it helped no end because I felt as though I was normal. I wanted to come off, off them as soon as possible, you know, because I know they have a lot of side effects, steroids. It didn’t, fortunately I was lucky, I didn’t get many side effects at all. They’re supposed to make you a little bit fat in the tummy and, and other things, I can’t remember all the side effects.

But I was quite fortunate, I didn’t get them. But it, I think the frustrating part about it all was, I was sort of over the moon that I was going down in size, you know, of tablets. I got right down to about one tablet and then he, they, what the doctor does, he takes a test to see, I can’t think of the name, but they take a test to see what the blood levels are and you, you feel right down in the dumps when he says, ‘No, it, it’s too high the, the level, you’ll have to go back on another one’ you know. And it was like this all the time until I gradually got off them.

I mean as I said I hate being puffy, I hate being like a chipmunk and putting the weight on because of it and also because you are not that mobile, you know, you put weight on, you don’t need to eat much just sit you know, take your steroids, sit and watch the television and you put weight on and I do hear about, read about people who have, who have taken steroids on a long term basis their organs being affected by it and yes, I’m worried and if I can come off them I’ll come off them. The doctors don’t seem to bothered about me coming off them so it’s not as though it’s going to cause me much distress and I’m very, I’m down to a very low dosage now so I’ve really only got one more step and I’ll be off them so.

But what I would like to have known, when I first started it, and what I know now about it, is the effect cortisone has on you. I mean, I can see the effect it’s had on me. Thin skin, you know. Knock, knock your skin and you’re black and blue. And if you happen to fall badly your skin just sort of shears off so that you’re all bleeding and it, it looks awful, terrible.

The side effects I’ve had from cortisone is I am a stone overweight. Also my skin is very, very thin so that if I knock myself or cut myself, I, best place to go is the casualty and they just pull it together, the wound together and then put those cross stitches on. You can’t stitch through my skin ‘cos as you put the needle in and pull it out it would tear the skin. I’m allergic to elastoplasts because someone put that on me one time and when they took it off my skin came off with it. Which it, you cure one thing but you create another problem. This seems to be how it is with arthritis.

I found them fairly helpful. I had them in my knees, several in my knees and they had quite a lot of effect immediately. They would give me the injection and remove some of the excess fluid in my knees and so immediately afterwards it was a lot, lot better and that effect would last, in, in the early years that effect could last for about a year, but after repeated injections I think the effect becomes less. They did try injecting my hips under anaesthetic but that didn’t have so much effect. They injected my wrist as well which helped. Yes, it, it did, it had quite a, quite an effect the injections and lasted for a reasonable time. Yeah.

Are the injections themselves painful?

I think a lot of people find them painful. I, I didn’t find them particularly bad. Just, just as bad as, as having an injection. I know some people find them quite awful. No, I mean they’re not pleasant but I didn’t, I didn’t find them particularly bad at all.

I have a Rheumatology card where you can actually ring in if you’re having trouble with your RA and theres an injection clinic, where you just can turn up on a Friday, you know they can just book you in there, theres no waiting for it, so you know what I mean, if you have joints which are regularly troublesome you can pop in and they can put a cortisone in or whatever. So they’re pretty good.

So do you feel quite involved in the management of your RA?

I do feel yeah now definitely. Yeah, especially with finishing work it’s made it a lot better, mana, sort of managing it really. I feel a lot more comfortable with it, before that I couldn’t come to terms with it at all really.

Do you like I was going to say, the fact that you can just ring up and sort of take a bit of control yourself?

Yeah it does help you really, especially if you’re having trouble with a joint like, as I said me two shoulders, me shoulders were bad and I was having a lot of problems even just cleaning me teeth, brushing me hair, just trying to move me hands round the back there, you had to try and shift them, it was, it’s weird like trying to explain to people like right, it’s just sort of day to day stuff and you just, the pain is incredible, so to pick a phone up and to just explain to them down the phone and they say ‘Right not a problem like right, come in on Friday such a time like right and well put some cortisone in them. Put some cortisone in and two days later you feel super human again like basically. Yes, it’s pretty good.

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 theres 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.

I had the Depo-Medrones. Yeah.

So they were into joints?

I’ve had into joints but I used to just have them in the bottom that did the whole, the whole body.

Right. OK and how long did the effect of those last?

At the end about ten days, they were only lasting me about ten days but they don’t like you to have them, too many in a small space of time which is what I was doing.

You say in the end that they had previously worked for longer?

Yeah they were working for sort of two to three weeks but they just, they were literally, I’d have the injection and within ten days it wasn’t as if I’d had it done so they weren’t lasting very long on me at all.

And when you say they worked, what effect do they have?

When you had the Depo-Med, Depo-Medrone injection the next morning you knew that you could get up and you could do, I would do all my housework. You know, I’d try to do it all because I think you know as the days go on it gets less, the effect gets less and less but the first sort of two, three, four sometimes days are just brilliant. You just think ‘I can be normal again’ [laughs], well as normal as you can but you know for you, for when you are feeling really bad and they do give you that injection, that’s a lovely feeling those first few days because everything is so much easier. And it just slowly wears off.