Steroids: how they are used in rheumatology

The steroids of rheumatology are corticosteroids, man-made forms of cortisol, the hormone the body makes to keep inflammation in check. They settle inflammation and calm an overactive immune system, which is why they are used across the whole of rheumatology. Prednisolone, methylprednisolone and triamcinolone are among the commonest.

Anabolic steroids, the drugs some people misuse in sport to build muscle, are something else entirely. Anabolic steroids are based on testosterone, work in a completely different way and are used for a completely different purpose; corticosteroids do not build muscle. People often worry about this, which is reason enough to make it clear from the start.

A corticosteroid can be given in several ways, chosen to fit what is being treated:

• As tablets such as prednisolone, which reach the whole body and are used when an effect throughout it is needed.
• As an injection into or around one joint, a tendon sheath or a bursa, where the medicine works mainly on the spot. These are the subject of our guides to steroid injections: when they help and ultrasound-guided injections.
• As an injection meant to act on the whole body: into a muscle, or, for disease that is severe or threatens an organ, a larger dose through a drip into a vein over a few days, sometimes called a steroid pulse.

So an injection of steroid can act locally or on the whole body; that depends on where it goes and why. The form that suits you is decided with you, according to the diagnosis.

Rheumatology turns to steroids when inflammation needs bringing under control fast. They are used to settle a flare, to give relief while a slower disease-modifying medicine (a DMARD, explained in our guide to DMARDs) builds up, and to treat conditions that respond to them particularly well, such as polymyalgia rheumatica and giant cell arteritis. Larger doses for the whole body, through a drip among them, can play a part in severe, active disease, such as some forms of vasculitis and lupus, while an injection into one spot suits a single joint or soft-tissue problem. Steroids damp down inflammation rather than cure the condition behind it, so they usually sit within a wider plan.

Dose and duration decide most of what a steroid's side effects will be. One injection into a joint seldom causes much trouble beyond the commonest side effect, pain and swelling at the spot that can be intense but usually settle after a few days. The effects people link with steroids come mostly from higher doses over longer periods, as tablets or as courses for the whole body, and can include a rise in blood sugar or blood pressure, weight gain, changes in mood, a greater chance of infection, effects on the eyes such as cataracts, and thinning of the bones over time. For that reason the dose is kept as low, and the course as short, as will do the job, with checks along the way. Bone is lost early in a course of steroid tablets, so for those whose bones are most at risk bone protection begins at the same time as the steroid, without waiting for a bone scan: anyone who has broken a bone in a minor fall, women of 70 or over, and women past the menopause and men of 50 or over whose steroid comes to 7.5 mg of prednisolone a day or more on average over three months (a higher dose for a shorter time counts too), or the same strength of another steroid, or whose risk of a fracture turns out high when it is assessed. Enough calcium and vitamin D are part of the plan too.

Some simple habits make a course of steroids safer. After any course of steroid tablets beyond a short one, the dose is tapered and never cut off abruptly, because the body needs time to make its own cortisol again. You should also have an NHS Steroid Emergency Card; if nobody has given you one, ask. Keep it on you, and let anyone treating you see it: during a course, and for some time after it ends, the body cannot raise its own cortisol in an illness, an injury or an operation as it otherwise would, so the treatment may need adjusting then, and those caring for you must know. Like any plan of treatment, it is made with you and revisited along the way.

Most questions about steroids can wait for your next review. A few cannot, chiefly because a longer course of steroid tablets alters how the body handles illness, and goes on altering it for a while after the course ends.

Running out, or missing doses. A course of steroid tablets must not come to a sudden halt. If you miss one dose, take it once you remember, unless you only remember the next day, in which case leave the missed dose out and take the next one at the usual time; never take two doses together to catch up. If you have run out, or you have missed doses and are unsure what to take, ask your prescribing team, a pharmacist or NHS 111 that day rather than leave a gap.

Illness, injury or an operation. Make sure whoever treats you knows you take steroids and sees your NHS Steroid Emergency Card, since a higher dose may be needed then. The reason is that steroid tablets taken for more than a few weeks, or repeated courses or injections within a year, leave the adrenal glands making less cortisol of their own, for months afterwards in some people. Lose a dose to vomiting while you are ill, and cortisol can fall dangerously low, a state called an adrenal crisis, which may need the steroid given by injection; that is why vomiting that will not let your tablets stay down is in the first list below. Being sick at other times, or very dizzy on its own, is in the second list, as a steroid effect to have checked that day; fainting, or becoming very drowsy or confused, during an illness or after an injury belongs to the first.

Treat any of these as a 999 or A&E emergency: call 999 and do not drive yourself to A&E.

• Severe illness with suspected sepsis: a high fever with shaking, confusion, rapid breathing, or feeling dramatically worse over hours
• With a fever or feeling unwell, a rash that does not fade when you press it, a stiff neck with eyes that cannot bear bright light, or skin, lips or tongue turning blue, grey, pale or blotchy, since these can be signs of meningitis or sepsis, as can a very bad headache, confusion or a first seizure with a fever or feeling unwell; on black or brown skin the rash and the change of colour may be easier to see on the palms of the hands or the soles of the feet
• Chest pain that is crushing, tight or like a pressure, that spreads to an arm, the jaw, the neck, the stomach or the back, that comes with breathlessness, sweating, feeling sick or feeling light-headed, or that came on suddenly and does not go away
• Breathlessness that is severe, with gasping, choking or no breath to get words out; or coughing up blood
• Palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, since a heart whose muscle or rhythm is affected has to be checked at once
• Sudden weakness or numbness on one side, a drooping face or difficulty speaking, a sudden severe headache, sudden confusion or a seizure, or sudden loss of vision, any of which can be a stroke, even if it stops after a short time
• An eye that suddenly and completely loses its sight
• Vomiting that will not let your tablets stay down, or, during an illness or after an injury, becoming very drowsy or confused, or fainting, after more than a few weeks on steroid tablets, or repeated courses or injections in the past year, since your body may be running short of cortisol and the steroid may need to be given by injection; have your NHS Steroid Emergency Card ready
• Sudden severe pain in the abdomen or back, since the pancreas can react to prednisolone
• Lips, mouth, throat or tongue that suddenly swell, a throat that feels tight, very fast breathing or a struggle to breathe or to swallow, skin, tongue or lips turning blue, grey or pale (on black or brown skin this may be easier to see on the palms of the hands or the soles of the feet), becoming suddenly very confused, drowsy or dizzy, or fainting and not being able to be woken, since this can be a severe allergic reaction, anaphylaxis, which can follow a dose of any medicine
• Vomiting blood, or bleeding from the back passage that is heavy or will not stop, most of all with faintness, confusion or pain in the abdomen, or vomit that is black or dark brown, since a stomach ulcer on prednisolone can bleed
• Thoughts of harming yourself or ending your life, which steroids can bring on

Any of these needs an assessment that is urgent, on the same day, from your GP, your rheumatology team or NHS 111:

• A fever, or feeling generally unwell, on immunosuppressant, biologic or steroid treatment, since an infection has to be treated early; steroids can hide the usual signs of an infection, so act on the first sign of one rather than wait until it has taken hold
• A joint that is hot and swollen, with a fever or feeling unwell, since an infected joint has to be ruled out at once, at A&E or through NHS 111
• A joint that has become hot and very swollen suddenly, or is worsening quickly, even without a fever, since an infected joint does not always announce itself with one; a joint that will take no weight at all, or that cannot be moved, is a 999 or A&E emergency, whether or not there is a fever
• After a steroid injection, a joint or area that grows hotter, more swollen or much more painful over the following days, since an infection, though rare, has to be ruled out that day: a joint that will take no weight at all, or that cannot be moved, is a 999 or A&E emergency, as the line above says; with a fever or feeling unwell, go to A&E or call NHS 111; and otherwise, if the joint still takes weight and moves, an urgent GP appointment, NHS 111 or a specialist clinic that can see you that day; our guides to steroid injections and ultrasound-guided injections cover the aftercare
• New chest pain, new palpitations, or breathlessness that is new or getting worse, since a steroid can unsettle the heartbeat and bring on breathlessness, and both are signs to have the heart and lungs checked; palpitations happening now that do not stop, or that come with chest pain, breathlessness, feeling faint or fainting, belong to the first list; in pregnancy, breathlessness that comes on suddenly, or when you lie down, or with dizziness, is for your midwife or maternity unit straight away
• A new red, painful eye, or sight that has blurred, dimmed or changed, which needs an eye casualty or urgent eye clinic the same day, as does an eye that light hurts, since steroid treatment can lead to cataracts and can worsen glaucoma, and a red, painful eye of any cause needs an eye specialist
• A marked change in mood or behaviour, confusion, or seeing or hearing things that are not there, on steroid treatment, since prednisolone can do this, the more so the higher the dose; confusion that comes on suddenly is a 999 or A&E emergency, as the first list says
• Unusual thirst or hunger, passing urine more often, or feeling sleepy or confused, on steroids, or swelling of the arms or legs, bruising or bleeding that is not normal, black or dark red stools, severe stomach pain, severe back pain, a severe upset stomach, being sick, or very bad dizziness or passing out, since each can be a steroid effect that needs checking without delay; pain in the abdomen or back that comes on suddenly and severely is a 999 or A&E emergency, as the first list says
• Contact with measles, chickenpox or shingles, since these infections can be severe on steroids and a medicine to protect you may be needed

A blood sugar or blood pressure creeping up at a check, or weight going on, calls for a prompt review with your team instead of waiting for the next appointment on the calendar; a marked change in mood, and unusual thirst or passing urine more often, are in the list above. If you also take a DMARD, the lines that belong to it, the contact with measles, chickenpox or shingles among them, are in our guide to DMARDs, and our guide to infections and arthritis medicines says more about infections on steroids and about your treatment while you are ill. If you cannot tell how urgent something is, asking is never a mistake.

In small doses for short spells, steroids work fast and dependably and are usually easy to take; much of their bad name comes from a dose that is higher, or a course that is longer, than the condition needs. How much, in what form, for how long and how to finish are specialist decisions, taken with you and revised as the course runs. The questions that crop up on the way, about a missed dose, an illness, a side effect or an operation ahead, are better put to your team than guessed at.

Is this the kind of steroid misused in sport?

No. Rheumatology uses corticosteroids, man-made versions of a hormone the body produces for itself, which settle inflammation. The anabolic steroids some people misuse in sport to build muscle are a different kind of medicine altogether, with a different purpose.

Will a joint injection affect the rest of me?

A steroid put into a joint, a tendon sheath or a bursa acts mostly on that spot, with only a little spreading through the body, so its side effects are usually felt there too: pain and swelling at the spot, sometimes intense, are the commonest, and they generally ease after a few days. A steroid can also be injected into a muscle or given into a vein when an effect across the whole body is wanted, which is a different use altogether.

Will steroids make me put on weight and cause other side effects?

Not necessarily. Most side effects belong to higher doses over longer periods. A single injection into a joint seldom causes them. When a longer course is needed, the dose is kept as low as will work and is watched, and bone protection is started alongside it for those whose bones are most at risk, as the section on side effects explains.

Can I come off steroid tablets straight away?

No. After a longer course of steroid tablets, the dose has to come down gradually so that your body can adjust, with the steps planned by your team. Carry an NHS Steroid Emergency Card for anyone treating you to see, and ask for one if you do not have it.

When is a steroid given into a muscle or a vein instead of a joint?

When the aim is to treat the whole body rather than one spot: an injection into a muscle to calm a flare in many joints, for instance, or a short course through a drip for severe, active disease. How the steroid is given follows from what needs treating.