Infections and arthritis medicines

Most of the medicines that control inflammatory arthritis work by turning down an immune system that has become overactive, each in its own way, whether it is a conventional DMARD like methotrexate, a biologic or JAK inhibitor or a steroid. That calming is how they protect your joints, and it is also why infections become more likely, since the immune system cannot be quietened against the joints alone.

The size of the effect differs from one medicine to the next. For standard tablets such as methotrexate and sulfasalazine it is very small; biologics, JAK inhibitors and steroids raise the risk more. Regular blood tests on many of these medicines check your blood count, one part of your defence against infection. Controlling the arthritis helps in its own right too, because active inflammatory disease carries a raised risk of infection of its own.

A full life is still the aim. A handful of habits, the same ones that protect anyone, do most of the work:

• Wash your hands often, above all before you eat and after time with someone who is ill.
• Take care with food: store and prepare it properly, avoid unpasteurised foods such as Brie, feta and blue cheeses, and be careful with food and water abroad.
• Keep cuts and grazes clean and covered, and watch them as they heal: skin around one that becomes painful, hot and swollen is in the second list under When to seek help.
• Look after your skin and teeth. Cracked skin and athlete's foot let germs in, and both can be treated; brush your teeth regularly.
• Avoid close contact with anyone you know has an infection. Crowds and company are fine; it is sitting close to someone who is plainly ill that is worth avoiding.

Measles, chickenpox and shingles need more than care. If you have been near someone with one of them, ask NHS 111 that day what to do: these infections can be serious when your defences are lowered, and you may need a medicine to protect you.

Vaccines are the other line of defence. The injected flu vaccine and the COVID-19 and pneumococcal vaccines are not live and are recommended on these medicines. The children's nasal spray flu vaccine is live, and a child on methotrexate must not have it. Anyone aged 18 or over whose immunity is severely weakened can have the non-live shingles vaccine, which matters because shingles is common on some of these treatments, JAK inhibitors among them. Live vaccines, such as MMR and the yellow fever vaccine, need your rheumatology team's advice before you have one. Raise travel plans and vaccine questions at your reviews, so that the timing can be planned around your treatment; our guide to vaccinations in rheumatology covers the vaccines one by one.

When an infection is serious, needing antibiotics through a drip or a stay in hospital, DMARDs and biologics are stopped for a time and started again once you have recovered. A minor infection, such as a simple urine infection treated with a few days of antibiotic tablets, often needs no change to a DMARD, and hydroxychloroquine is usually continued through both. For a JAK inhibitor, as for every medicine here, your team will say whether a pause is needed. A pause your team plans is part of the treatment, not a setback.

That call is not yours to make alone: it turns on the medicine, your condition and the infection, and so does the moment to restart. If you have an infection with a fever, or you are prescribed antibiotics, tell your rheumatology team, your GP or NHS 111 the same day, and carry on with your medicines until your team tells you otherwise; stopping on your own is not the same as a pause they arrange. A cold without a fever does not usually need any change. Should your arthritis flare during a pause, the managing a flare guide has ways to get through it.

Steroid tablets such as prednisolone are the exception. Taken for more than a few weeks, they can stop your body making enough cortisol of its own, so they are tapered slowly and never stopped abruptly. Illness makes this more important, because the body needs extra cortisol to cope with it, and someone on longer-term steroids may need a higher dose while unwell. That dose is for the clinicians who look after you to decide, unless your team has already given you sick-day rules, in which case follow them.

Carry on with your steroid tablets during an illness, and ask your rheumatology team, your GP or NHS 111 the same day for advice. If you have been given an NHS Steroid Emergency Card, carry it and show it to anyone who treats you; if you take steroid tablets for the longer term and have not been given one, ask your team whether you need it. The signs that your body is running short of cortisol are a 999 or A&E emergency, set out in the first list under When to seek help. Our steroids guide covers the card and tapering in more detail.

The simplest protection costs nothing: tell every professional who treats you what you take, from your GP and any out-of-hours or A&E doctor to your dentist and the pharmacist you ask for advice.

Two things follow from it. A clinician who knows you are on treatment that damps the immune system takes an infection more seriously. And some prescriptions clash with your medicines: trimethoprim and co-trimoxazole, two common antibiotics, must not be taken alongside methotrexate, because the combination can be toxic, and the risk can last for weeks, or even months, after methotrexate has been stopped; a number of other antibiotics react with it too and are avoided where possible. Carry an up-to-date list of your medicines, on paper or on your phone, and mention your rheumatology medicines at every appointment, whatever it is for.

Plan an operation around your medicines as well as your joints: tell the surgeon, the anaesthetist and your rheumatology team everything you take, well ahead of the date. Conventional DMARDs such as methotrexate are usually continued, since trials found that carrying them on did not add to complications after surgery, and arthritis often flares after an operation. A biologic is handled differently: the operation is often timed for when the usual gap between doses has passed, and the medicine can restart once the wound has healed, usually around two weeks later, with the stitches or staples out and no sign of infection. The details depend on the medicine and the operation, and your teams agree them together, so do not stop anything yourself.

Steroids need their own plan. If you take steroid tablets, or in the past year have taken them for more than a few weeks or had repeated courses or steroid injections, you may need extra steroid cover for surgery, for an invasive procedure such as an endoscopy, and for dental surgery, since your body may not be able to make the extra cortisol it needs. Tell the team, and your dentist well before any dental surgery, and show your NHS Steroid Emergency Card if you have one.

A few signs on these medicines need help at once, and others the same day, and the two lists below sort them. Sepsis, where the body's response to an infection starts to damage its own organs, is the most serious, and the first list holds it together with confusion that comes on suddenly, or with a fever or feeling unwell; the signs of a stroke; and, after more than a few weeks on steroid tablets, or repeated courses or injections in the past year, becoming very drowsy or confused during an illness or after an injury. Steroids can cover up some of the usual signs of an infection, so feeling dramatically worse over hours belongs in the first list whether or not you have a fever, and an infection that is getting worse more slowly belongs in the second.

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
• Serious harm you have already done to yourself, such as an overdose, or a feeling that you may be about to harm yourself, since you need help to keep you safe now

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; this includes an infection that starts with a cough, or with a change in your urine or in how often you pass it, and an infection that is getting worse, or has not begun to improve two or three days after starting antibiotics, though feeling dramatically worse over hours is in the first list; keep taking your medicines unless your team tells you to pause them
• Skin that becomes painful, hot and swollen, around a cut or anywhere else, or redness that spreads, since this can be cellulitis, an infection of the skin, whose redness may be harder to see on black or brown skin; with a fever or feeling unwell, short of the signs that follow, at A&E or through NHS 111; with a very high temperature or feeling hot, cold or shivery, a fast heartbeat or fast breathing, purple patches on the skin, which may be less obvious on black or brown skin, feeling dizzy or faint, confusion, or skin that is cold, clammy or pale, it is a 999 or A&E emergency, as are the signs of sepsis in the first list
• A painful rash of blisters in a band on one side of the face or body, since this is likely to be shingles, which can be more severe when the immune system is weakened, and the medicine for it works best started within three days of the rash appearing
• The spots of chickenpox, since chickenpox can be very serious on these medicines, and a medicine that may prevent its complications has to be started within 24 hours of the spots appearing
• 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
• New chest pain, new palpitations, or breathlessness that is new or getting worse, since a chest infection on any of these medicines can show itself as breathlessness, and a steroid can unsettle the heartbeat; 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
• Thoughts of ending your life or of hurting yourself, or harm you have done to yourself that is not serious, short of the line in the first list, which steroids can bring on: ask your GP to see you that day or call NHS 111, and Samaritans answer at any hour on 116 123
• 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, and so, after more than a few weeks on steroid tablets, or repeated courses or injections in the past year, is becoming very drowsy or confused during an illness or after an injury
• 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, and so, after more than a few weeks on steroid tablets, or repeated courses or injections in the past year, is vomiting that will not let your tablets stay down, or, during an illness or after an injury, becoming very drowsy or confused, or fainting
• Contact with measles, chickenpox or shingles, since these infections can be severe on steroids and a medicine to protect you may be needed
• Being near someone with measles, chickenpox or shingles, while you take a medicine that weakens the immune system, since measles and chickenpox can be dangerous when the immune system is weakened, and you can catch chickenpox from someone with shingles if you have never had chickenpox; NHS 111 can tell you what to do that day

Infections that keep returning, such as repeated chest, bladder or skin infections, are worth raising with your GP or your rheumatology team at your next routine review. Questions that can wait, such as planning a pause or a vaccine, are for your rheumatology team at a routine appointment, and Dr Borukhson's own patients can get in touch through the contact page. If you take methotrexate, another DMARD, a steroid, a biologic or a JAK inhibitor, the warning signs that belong to each are set out in our guides to methotrexate, DMARDs, steroids and biologics and JAK inhibitors. If you cannot tell how urgent something is, asking is never a mistake.

Reading about infections can leave you more worried than the facts justify. The risk these medicines carry is the cost of what they achieve: they protect your joints from damage and keep the disease under control, and arthritis left uncontrolled generally does more damage over time. What makes the difference is knowing a few situations well: the signs in the first list, a hot, swollen joint with a fever or feeling unwell, steroid tablets that must never be stopped suddenly, and contact with measles, chickenpox or shingles. Know those, keep everyone who treats you informed, stay up to date with your vaccines, and get on with your life, which is what the treatment is for.

Do I stop methotrexate while I'm taking antibiotics?

Do not decide alone: ask your rheumatology team, your GP or NHS 111 the same day, and carry on with it until your team says otherwise. Methotrexate and most other DMARDs are usually stopped for a time during a serious infection, one that needs antibiotics through a drip or a stay in hospital, and restarted once you are better; through a minor one, such as a simple urine infection treated with a short course of antibiotic tablets, they are often carried on, and hydroxychloroquine is usually continued through both. Which applies to you depends on the medicine and the infection. Two antibiotics, trimethoprim and co-trimoxazole, must not be taken alongside methotrexate, and several others clash with it and are avoided where possible, so tell anyone who prescribes for you that you are on it.

I'm ill. Is it safe to stop my steroid tablets?

No. If you have been on steroid tablets for more than a few weeks, or had repeated courses or injections in the past year, then vomiting that will not let your tablets stay down, or, during an illness or after an injury, becoming very drowsy or confused, or fainting, is a 999 or A&E emergency, as the first list under When to seek help says. Never stop steroid tablets suddenly: they can stop your body making enough of its own cortisol, a hormone it needs more of when you are ill. Carry on taking them and ask your rheumatology team, your GP or NHS 111 the same day whether the dose should rise for a while; if your team has already given you sick-day rules, follow them. Have your NHS Steroid Emergency Card with you if you have one. Our guide to steroids in rheumatology sets out why the rule matters.

Should I keep away from crowds, eating out or grandchildren with colds?

Crowds and eating out need no avoiding; everyday habits do more: wash your hands often, take care with food, and keep cuts clean and covered. With anyone who has an infection, a grandchild with a cold included, company is fine, but keep close contact down until they are better. Measles, chickenpox and shingles are the exception: if you have been near someone with one of them, NHS 111 can tell you what to do that day, as the second list under When to seek help says.

What vaccines can I have on these medicines?

Non-live vaccines are recommended: the injected flu vaccine each year, COVID-19 vaccination whenever you are invited, and the pneumococcal vaccine. If a medicine or an illness has left your immune system severely weakened, you can also have the non-live shingles vaccine from the age of 18. Check with your rheumatology team before any live vaccine, MMR and yellow fever among them, because live vaccines are generally avoided on treatment that weakens the immune system. Bring travel plans and any vaccine questions to your reviews, so that your team can fit them around your treatment. Our guide to vaccinations in rheumatology takes each vaccine in turn, with the timing around your treatment.

I have a fever and my knee has swollen up and feels hot. Can it wait until my next appointment?

No. 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. Call 999 and do not drive yourself to A&E. A hot, swollen joint with a fever or feeling unwell needs an assessment the same day, at A&E or through NHS 111, and take a list of your medicines with you. An infected joint (septic arthritis) is a very serious condition that needs treatment as early as possible to stop it causing lasting damage. In hospital it is checked with a blood test, and a sample of fluid may also be taken from the joint (joint aspiration).