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Rheumatoid Arthritis

Steroid tablets, injections & intravenous pulses for rheumatoid arthritis

Steroids (full name corticosteroids) are very effective in reducing inflammation and so are often prescribed for people with rheumatoid arthritis (RA). They can be taken in four main forms:

  • daily tablets
  • by injection into individual joints
  • by injection into a muscle (thigh or buttocks)
  • in a solution given intravenously as a drip over 1-2 hours (often called a 'pulse').This is rarely used for RA these days.

People are often prescribed a steroid in one form or another to overcome the initial symptoms of RA and/or while other medication eg disease modifying anti-rheumatic drugs (DMARDs) take effect. Higher doses can also be prescribed for short periods to help people overcome a 'flare' of their RA.

Steroid tablets (Prednisolone)

Several people we talked to were taking or had taken a steroid daily and this ranged from a few months to 42 years. People described the effects of steroids as decreasing pain, increasing mobility, making them feel more 'lively', but some were unsure of their effect.

Steroid tablets used to be prescribed more readily before the problems of long-term, higher dosage use were well known. People who were taking them regularly had often reduced the dosage, over time, to a minimum to still keep their symptoms at a bearable level but described the difficulties in safely reducing the dose. One woman's doctor was 'happy for her to control her steroid tablets within limits' during a flare.

 

Describes the effects of steroid tablets and reducing the dose over time.

Describes the effects of steroid tablets and reducing the dose over time.

Age at interview: 70
Sex: Male
Age at diagnosis: 70
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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. 

A woman who had side effects from DMARDs found steroids the only medication that would work. Several people said they were worried about the unwanted effects and would prefer not to take them; one woman chose to stop taking steroids (over time) in favour of taking more painkillers. However one woman felt that the improved quality of life it gave her was worth the risks.

 

Thinks the benefit of a better quality of life from taking steroids daily outweigh the risks.

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Thinks the benefit of a better quality of life from taking steroids daily outweigh the risks.

Age at interview: 37
Sex: Female
Age at diagnosis: 19
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I do worry about it, but I do again like try and see the positive side, so I try not to let it prey on my mind I mean ideally I wouldn't like to be taking any of them and it's a constant sort of thing with the consultant when I go to try and get my steroids down, which I do try and do, but I find that I just, I can't operate really on a lower level. 

And I know that without steroids I probably would be in a wheelchair, because they do make that much difference but people, I find that people I come across in clinics and things are quite proud of the fact that they're not on steroids, but then again they don't have the quality of life that I've got 'cos they sort of shuffle in and they can't bend their hands and you know they can't use their hands but they're quite proud that they haven't had their joints replaced because they haven't had steroids and I still wouldn't choose any other way, I think that my quality of life is much more important than the length of my life and you know I know that steroids probably will shorten the length of my life and maybe produce other problems that I haven't come across yet.

But I'm still, I still think there's a balance there and I'm happy to take them because they just give me as near a normal life as I can have, where if I wasn't on them I'd be a lot stiffer, probably in a wheelchair and you know, not just not having a normal life really, probably leading a very isolated life. But it's not a treatment that they give now, they try and give them more sort of intermittently than like on a permanent basis like I'm on, cos that was the old style of treating it and you know it's not the way they do it anymore. But I am quite happy to be taking them really.

People mentioned a number of short-term side effects, including nausea/vomiting, headaches, mood swings and flatulence. Longer term effects known to occur include weight gain and puffiness, particularly of the face, which one woman described. Skin becomes thin and delicate and is then easily injured or bruised. Steroids also reduce bone density leading in time to osteoporosis. Bone density scanning (See 'Regular monitoring and other diagnostic tests') can identify those at risk and some people took a calcium supplement or had increased the amount of calcium in their diet to improve their bone density. In children and teenagers high doses of steroid can interfere with growth.

 

Steroids made her gain weight.

Steroids made her gain weight.

Age at interview: 43
Sex: Female
Age at diagnosis: 24
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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.

 

Taking steroids for 42 years made her skin thin and fragile.

Taking steroids for 42 years made her skin thin and fragile.

Age at interview: 78
Sex: Female
Age at diagnosis: 32
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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.

 

A bone scan identified early osteoporosis but now she takes calcium and her bone density has not...

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A bone scan identified early osteoporosis but now she takes calcium and her bone density has not...

Age at interview: 37
Sex: Female
Age at diagnosis: 19
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Because as a result of the steroids, which I'd always been warned about over the years, I've developed the initial stages of osteoporosis but it was very early and I've been taking calcium treatment for that and I've had a follow up bone scan, which was like, they were two years apart, and there was no significant change at all, so the treatment is working and it was caught early enough but, I did swap consultants and the consultant, the new consultant was a lady and I found her much more compassionate and understanding and she ordered a lot of tests, that probably should have been done on me earlier just to rule out things. 

She ordered like she ordered the bone scan, I'm trying to think what other, I can't remember, there was another important test that she ordered, but that ruled out something but the bone scan showed up the osteoporosis where the previous consultant I'd had he specialised in osteoporosis and he never sent me for a bone scan so, you know, if I hadn't changed I wonder how long it would have been left undetected and the longer it was undetected then the less likely, you know I would have had successful treatment.  

One woman felt that after taking steroids for about 8 years she couldn't make decisions effectively and felt her head was a 'fug' and 'as if there's a blanket wrapped round your brain and you had to fight to get anything out of it', but when she stopped taking them she could again make quick decisions.

Steroid Joint injections

Steroid can be injected directly into particularly painful or inflamed joints ('in flare'). People we talked to had received injections into different joints, most commonly the knee but all of the following were mentioned' hips; ankles; toes; shoulders; elbows; wrists; fingers and the jaw. Several people found these injections painful or very painful and decided not to have any more; options to reduced discomfort include use of vryogesic (freezing spray which makes the skin cold and numb just while the injection is being performed) or local anaesthetic can be used to numb the skin completely to reduce discomfort. Fluid may be drawn out ('aspirated') from the joint via a needle immediately before a steroid injection to help improve the symptoms.

Different people described the effect of the injections as 'brilliant', 'helpful', reducing the pain for a while, 'calms down the joint' and 'not a lot'. However, one woman's hands were worse after injections into her fingers. In some the joint injection solved the problem and the pain disappeared, in others the effects lasted from 2-3 weeks to approximately two months or more when some had repeat injections.

 

Has had injections into various joints with varying effects.

Has had injections into various joints with varying effects.

Age at interview: 51
Sex: Female
Age at diagnosis: 27
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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.

Doctors may use imaging equipment to help them to inject the steroid into the correct point, eg. into the hip. One man had pins and needles after a wrist injection and one woman who had her jaw injected said the anaesthetic had paralysed her face for some hours after the injection.

Injections are sometimes available at short notice via the Rheumatology clinic and some people could phone and have one later that week.

 

Can ring the Rheumatology clinic and request injections if joints are particularly painful.

Can ring the Rheumatology clinic and request injections if joints are particularly painful.

Age at interview: 46
Sex: Male
Age at diagnosis: 38
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I have a Rheumatology card where you can actually ring in if you're having trouble with your RA and there's an injection clinic, where you just can turn up on a Friday, you know they can just book you in there, there's 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 we'll 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.

Steroid Pulses (methyl-prednisolone intravenous drips)

Many people we interviewed had in the past received a steroid pulse when their symptoms were worse. The steroid solution is infused over 1-2 hours via a cannula inserted into a hand or arm vein. This usually involved a 2-3 hour hospital visit but some people had had 2 or 3 pulses over 2-3 days. This treatment is very rarely used now.

 

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

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

Age at interview: 42
Sex: Male
Age at diagnosis: 17
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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.

Depo-Medrone (slow-release methylprednisolone) injections

Depo-Medrone injections into muscle are similar in effect to 'pulses'. For a few people this was the main medication every few weeks or months. However, most people described them as a 'back-up' or 'safety net' that they would have only 3-4 times a year. One woman felt they worked better than the steroid pulses. These are used routinely at the beginning of treatment, as a bridge until the DMARDs start to work, and to reduce short-lived flares.

 

Depo-Medrone injections made her feel better but the effects lasted shorter times the more...

Depo-Medrone injections made her feel better but the effects lasted shorter times the more...

Age at interview: 37
Sex: Female
Age at diagnosis: 27
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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.



See also young people's experiences of steroids for arthritis.

Last reviewed August 2016.

Last updated August 2016.

 

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