Patient guide

What is a rheumatologist?

The ACR describes a rheumatologist as an internal medicine or pediatric doctor with extra training in diagnosing and treating rheumatic diseases. These are conditions that affect the joints, muscles and bones, and also autoimmune diseases. They can involve the eyes, skin, nervous system and internal organs as well. Rheumatologists usually treat with non-surgical methods.

The ACR writes that there are more than 100 types of arthritis and rheumatic disease, and that early diagnosis can help prevent permanent damage.

When should I make an appointment?

The ACR and the Arthritis Foundation list several signs that are worth getting checked:

• Morning stiffness lasting more than 30 minutes, or repeated swelling in the finger, wrist, ankle or foot joints.
• Joint symptoms that last three days or more, or come back several times in a month.
• Repeated fever, fatigue, weakness, anemia, skin rashes or unexplained weight loss for which no other cause has been found.
• Hair loss, or mouth or genital sores.
• Vision changes: blurring, double vision, or a red, painful eye.
• Abnormal test results that have made a doctor suspect a rheumatic disease.

The ACR explains that because many conditions have similar symptoms, it is best to talk first with a general or family doctor. They may order initial tests and refer you to a rheumatologist if needed.

If you are not yet sure whether your problem belongs to this specialty, see the article “Joint pain: rheumatologist or orthopedist?”

What should I bring?

The ACR and the Arthritis Foundation recommend preparing these:

• Tests, imaging reports and notes from previous doctors. The ACR says it is best to have your own copy of these papers. Reports of X-rays, ultrasounds and MRIs, and test results (including ANA, RF, ESR and CRP if they were done) are useful. Bring the imaging films or discs as well.
• A list of the medicines you take. Write the name, dose and timing, and do not forget supplements and herbal remedies. Also note medicines you have tried before and how they worked, so that a treatment is not repeated.
• Allergies and previous drug side effects.
• Family history. The ACR stresses writing down any rheumatic or autoimmune disease in the family, even if it seems minor.
• Medical history: illnesses, surgeries, fractures, travel, sleep, diet, activity, job and tobacco use.
• Notes on your symptoms. The Arthritis Foundation suggests recording which joint hurts, what the pain feels like, what makes it better or worse, and whether there is swelling, stiffness or rash. Also note how long the morning stiffness lasts.
• A list of questions. Put the most important ones first, because there may not be time for all of them.
• A companion. The Arthritis Foundation says a friend or family member can listen, take notes and ask questions you forgot.

What happens during the visit?

According to the ACR and the Arthritis Foundation, it usually involves these steps:

1. A full history. You are asked about symptoms, past illnesses, surgeries, allergies, medicines and family.
2. A physical examination. The joints are checked for swelling, tenderness and inflammation, your walking and movement are observed, and the skin and eyes may also be checked for rashes or inflammation.
3. Review of your documents. Previous tests and imaging are looked at.
4. New tests or imaging, if needed. Blood tests for inflammation markers and antibodies, and an X-ray or ultrasound. The Arthritis Foundation points out that an X-ray may not show changes at first, and an ultrasound can detect early inflammation. See the “Rheumatology tests and drug monitoring” guide for details on the tests.
5. The next steps. The ACR writes that the results are interpreted together, and a diagnosis and a personal treatment plan are set. In complex cases several visits may be needed. The Arthritis Foundation says that until the results are ready, the doctor will probably treat the symptoms.

Reminders

• You do not need to stop or change your medicine before the visit. If you take medicine, go as you are, and ask the doctor if you have questions.
• A definite diagnosis may not be given on the same day. This is normal; some conditions need time and repeated tests.
• You can ask during this visit about the cost of tests and treatments, and whether insurance covers them.

A general rule

In rheumatology, almost no single test makes a diagnosis on its own. The NHS writes that no blood test can confirm or rule out rheumatoid arthritis, and NIAMS says that for lupus too, no single test is the final confirmation. The doctor puts together your history, examination, tests and imaging. Some patients who do have the disease also have normal tests (NIAMS), which means a normal test does not always rule out the disease.

So if your result is “positive” or “high”, take it to your doctor before worrying, and ask what it means together with your symptoms.

Inflammation and blood tests

• ESR and CRP. These are general markers of inflammation. The NHS writes that they measure inflammation but do not say what is causing it.
• Complete blood count (CBC). The NHS says it helps rule out other causes and shows anemia, but anemia also does not prove rheumatoid arthritis.

Antibody tests

Rheumatoid factor (RF). MedlinePlus writes that a positive RF alone does not diagnose anything, and the doctor weighs it against your symptoms, history and other tests. Healthy people sometimes have a small amount of RF, and conversely some people with rheumatoid arthritis have low or negative RF. The NHS says RF is high in more than half of people at the start of the disease, and about one in twenty people without the disease also test positive. MedlinePlus also names other conditions, such as Sjögren’s, lupus, scleroderma, some chronic infections and some cancers, among the causes of a high RF.

Anti-CCP. The NHS says a positive result raises the likelihood of rheumatoid arthritis, but not everyone with the disease has it. The Arthritis Foundation writes that about 60 to 70 percent of people with the disease have it. The NHS says being positive for both RF and anti-CCP may be a sign of more severe disease.

ANA. This test measures antibodies that target the nucleus of the body’s own cells. The ACR writes that a positive result is “not a sure sign of an autoimmune disease”. Up to 15 percent of completely healthy people also have a positive ANA, and only about 11 to 13 percent of those with a positive ANA have lupus or another autoimmune disease. MedlinePlus says many healthy adults, especially women over 65, may have a positive ANA, and some medicines or viral infections can also make it positive. On the other hand, the ACR writes that more than 95 percent of people with lupus have a positive ANA, so a negative ANA makes lupus less likely.

Some laboratories also report a “titer” (for example 1:160) and a pattern. The ACR says some laboratories report titers higher than 1:160 as positive. If your result has a titer and pattern, ask your doctor what it means. The article “What does a positive ANA or RF result mean?” has more detail.

If the ANA is positive and the doctor suspects lupus, NIAMS says more specific tests are requested, such as anti-Smith and anti-dsDNA antibodies and antiphospholipid antibodies.

Other tests

• Urine and kidney tests. In lupus, to look for protein or blood in the urine and to measure kidney function. NIDDK says high protein or many red blood cells in the urine is a sign of kidney damage, and creatinine is used to estimate kidney function.
• HLA-B27. A genetic test used when investigating ankylosing spondylitis. The NHS says it is positive in most people with the disease, but not everyone has the gene, and some people without the disease have it.
• Uric acid. Used to investigate gout (NHS). If the result is unclear, a sample of joint fluid is sometimes taken.

Imaging

The NHS and NIAMS write that X-rays and MRI show joint inflammation and damage, and the Arthritis Foundation adds that an X-ray may be normal early in the disease and an ultrasound can detect early joint inflammation. The NHS says that in spondylitis, if an X-ray does not make the diagnosis clear, an MRI is suggested.

Why do some medicines need regular tests?

Disease-modifying drugs (DMARDs) and biologics act on the immune system. The Arthritis Foundation writes that before starting, the doctor usually asks for a baseline X-ray and blood tests, and afterwards regular tests and checkups are done to see how the drug is working and its effect on the blood, organs and eyes.

• Methotrexate. The NHS says blood tests are done to check the blood cells, liver and kidneys. As an example, the NHS states that at first the tests are “every 1 to 2 weeks”, and once the dose is stable and the drug is working, usually “every 2 to 3 months”. This is only an example; your doctor sets your schedule. The NHS also says that sometimes, to check the lungs, a chest X-ray and perhaps a breathing test are needed before starting. Keep the booklet or sheet that records your drug dose and test results.
• Hydroxychloroquine. It needs regular eye examinations. The joint statement by the ACR, the AAO and two other societies says a baseline examination should be done in the first few months of use, and in people without special risk factors, annual screening should start after at most five years. Risk factors include a high dose for body weight, long-term use, reduced kidney function and taking tamoxifen at the same time. Your doctor or eye doctor sets your schedule. Do not stop the drug yourself out of fear of this side effect; the statement says stopping it should be a shared decision between the patient, the doctor and the eye doctor.
• Biologic drugs. The NHS says one of the risks is reactivation of old infections such as tuberculosis, so the doctor checks before starting.

What can you do?

• Have your periodic tests on time, even when you feel well.
• Keep your test results and their dates and bring them to visits. See the “Your first visit and what to bring” guide.
• If you drink alcohol, tell your doctor. The Arthritis Foundation says some DMARDs affect the liver.
• Ask your doctor before any vaccine. The Arthritis Foundation writes that immunosuppressive drugs make live vaccines risky, and recommended vaccines should be given with your doctor’s approval.
• Tell your doctor the same day about signs of infection (fever, chills, sweating, sore throat, cough, burning urination, diarrhea, rash or a painful sore). See the list in the “When should I call urgently?” guide.
• Ask your doctor to explain what each test is for and what the result means.

First of all

This page is general information and contains no doses. Only your own doctor decides the type, amount and timing of your medicines. Do not stop or reduce any medicine yourself, especially steroids, and do not change the dose. If you have a side effect or are thinking of making a change, talk to your doctor first.

Disease-modifying drugs (DMARDs)

The Arthritis Foundation describes them as drugs that calm part of the immune system so that inflammation decreases and, over time, the joints are protected. The NHS and the ACR name examples such as methotrexate, leflunomide, hydroxychloroquine and sulfasalazine. The NHS says methotrexate is usually the first drug, often given with another DMARD and a short course of steroids.

Some important points:

• They are slow to act. The NHS writes that they may take several months to work, and you should keep taking them even if you do not feel better right away. The Arthritis Foundation also says it sometimes takes weeks to months, and for faster relief a steroid or a temporary anti-inflammatory may be given.
• Several drugs may be tried. The NHS says sometimes two or three types of DMARD have to be tried before a suitable one is found. So if one drug does not work, tell your doctor; it means a better-suited drug has to be found, not that treatment is useless.
• They need regular tests. (See the “Rheumatology tests and drug monitoring” guide.)
• Methotrexate is weekly. The NHS stresses that this drug is usually taken once a week on a fixed day, and if it is taken daily by mistake or in more than the prescribed amount, it can be serious and even fatal. The NHS advises keeping the weekly tablet separate from daily medicines. If you make a mistake, contact your doctor or a medical center immediately. The NHS also says your skin may burn more easily than usual, so use sunscreen.
• Hydroxychloroquine is taken with food or a glass of milk, and the NHS says it takes a few weeks to start working. It needs regular eye examinations. Tell your doctor about persistent blurred vision or changes in how you see colors.

Biologics and JAK inhibitors

The NHS says drugs such as adalimumab, etanercept and infliximab are usually given together with methotrexate or another DMARD, and are mostly for people for whom a DMARD alone was not enough. They are injected. Side effects are usually mild (skin reaction at the injection site, infection, nausea, fever, headache), but the more serious risk is reactivation of old infections such as tuberculosis. So tell your doctor the same day about any sign of infection. About JAK inhibitors, the NHS says they are considered for adults with moderate to severe disease who have not responded to other drugs. The Arthritis Foundation also warns that JAK inhibitors (such as tofacitinib) raise the risk of serious blood clots, heart attack and stroke. If you take such a drug, ask your doctor about the warning signs.

Steroids (glucocorticoids)

Steroids are a strong and fast anti-inflammatory, but long-term use has side effects. The NHS writes that in rheumatoid arthritis they are used for quick, short-term relief, for example until a DMARD starts to work or during a flare, and long-term use carries a risk of osteoporosis, easy bruising, muscle weakness and thinning of the skin. On its steroid page, the NHS also mentions more infections, mood changes, high blood sugar and blood pressure, and eye problems such as cataracts. The lower the dose and the shorter the course, the lower the risk. NIAMS says that in rheumatoid arthritis and lupus, steroids are used “at the lowest effective dose”.

Things you should know:

• Do not stop suddenly. The NHS writes that suddenly stopping steroid tablets without your doctor’s advice can make you very ill. You may get tiredness, nausea, dizziness, loss of appetite and joint pain, and the disease may flare again. The NHS says that if you have taken them for more than three weeks or at a high dose, the dose must be reduced gradually. For giant cell arteritis too, the NHS explicitly says not to stop steroids suddenly. If you are vomiting and cannot keep your tablets down, or you feel unwell after reducing or forgetting the medicine, call the same day (see the guide “When should I call urgently?”).
• Steroid card. The NHS says if you take steroids for more than three weeks or a high dose has been prescribed, your doctor or pharmacist should give you a special card, and you should carry it at all times. The card shows that you take steroids and must not stop them suddenly. If you have not been given such a card, ask your doctor to write the same warning on a sheet or on your prescription.
• Infection. Steroids raise the risk of infection. The NHS says if you have been in contact with someone who has chickenpox, shingles or measles, tell your doctor immediately.
• Mood. The NHS writes that about one in 20 people who take prednisolone have a change in mental state such as anxiety, restlessness or depression. If you notice this, tell your doctor soon. If you have thoughts of harming yourself, go to the emergency department right away.
• Bones. The ACR says bone loss can begin even in the first six months. Your doctor may suggest a bone density scan or bone protection. The article “Steroids and osteoporosis” has more detail.

Anti-inflammatories and painkillers

The NHS says non-steroidal anti-inflammatory drugs (such as ibuprofen, naproxen and diclofenac) reduce pain and inflammation but do not stop the course of the disease, and they may sometimes cause serious stomach problems such as bleeding, which is why they are often given with a stomach-protecting drug. Vomiting blood or black, tarry stools is an emergency. Talk to your doctor about the type and side effects. The NHS says paracetamol reduces pain but does not reduce inflammation.

Infection, vaccines and alcohol

• The Arthritis Foundation gives a list of signs you should report to your doctor: chills, fever, sweating, sore throat, cough, burning or frequent urination, diarrhea or abdominal pain, rash or a painful sore, warm or red skin, and unusual tiredness.
• Live vaccines are risky with immunosuppressive drugs. Ask your doctor before any vaccine (Arthritis Foundation).
• If you drink alcohol regularly, tell your doctor, because some medicines affect the liver.

Diet and supplements

The NHS says there is no strong evidence that a particular diet affects rheumatoid arthritis, and the ACR stresses that supplements do not replace medicine. Discuss any supplement or herbal remedy with your doctor before taking it, because it may interact with your medicines (NIAMS).

If you miss a dose or have a side effect

The approach differs for each drug. For methotrexate and hydroxychloroquine, the NHS writes never to take two doses together to make up for a missed one. The best thing is to ask your pharmacist or doctor, and to read the leaflet inside the pack. Note down side effects and tell your doctor; they may change the dose or the type of drug.

Pregnancy

Some medicines are not suitable in pregnancy. Be sure to talk to your doctor before trying to conceive. See the “Pregnancy and family planning” guide.

Movement is part of treatment

Joint pain makes people want to keep still, but inactivity usually does not help. NIAMS writes that exercise helps with muscle strength, joint movement and flexibility, sleep, mood and a healthy weight. The NHS, writing about spondylitis, also says that staying active helps posture, spine movement and stiffness. But the right program depends on the type of disease and the state of your joints today. Talk to your doctor or physiotherapist before starting a new program (NIAMS says the same for RA and lupus).

Balancing rest and activity

For rheumatoid arthritis, NIAMS writes:

• When the disease is active and the joint is inflamed, rest a little more; when it is calm, be more active.
• Several short rests during the day are better than long periods in bed.

For Sjögren’s syndrome, the NHS writes that overdoing things and not resting may cause a flare. For lupus, NIAMS also says managing stress, having a support network and adjusting your work schedule to your condition are part of care.

What kind of movement?

• Light, low-impact aerobic activity. The ACR names walking and swimming for building muscle strength in rheumatoid arthritis. NIAMS also suggests exercise in water. For osteoarthritis, the NHS says the aim is 150 minutes a week of moderate aerobic activity such as cycling or brisk walking. This figure is for osteoarthritis; if you have active disease, ask your doctor what amount is right.
• Strength training. For osteoarthritis, the NHS recommends strength training for the main muscles on at least two days a week.
• Stretching and flexibility. In spondylitis the NHS says swimming and sport are usually fine, but some daily stretching and exercise is also important.
• Yoga and tai chi. NIAMS says they can help both movement and stress reduction.
• Physiotherapy. The NHS writes that physiotherapy improves fitness, muscle strength and joint flexibility. For the hand and wrist, a specific exercise program with guided sessions and home exercises is possible. Heat, cold and a TENS machine can also sometimes help pain.
• A healthy weight. The NHS says extra weight puts pressure on weight-bearing joints such as the knee and hip. Address this slowly and gradually, and do not go on a strict diet.

If you have pain or the joint is inflamed

• If you get pain or feel unwell during exercise, stop immediately. The NHS says this alongside its exercise videos for spondylitis.
• Do not press on a hot, red, swollen joint. In gout, the NHS recommends rest, raising the joint and an ice pack wrapped in a towel (for up to twenty minutes) during an attack. If a joint has suddenly become like this, especially with a fever, see the “When should I call urgently?” guide.
• After a steroid injection into a joint, your doctor will explain how much rest is needed (the NHS, in spondylitis, mentions resting the joint for up to 48 hours).

Protecting your joints in daily tasks

NIAMS and the NHS name several practical ways:

• Occupational therapy. The NHS writes that an occupational therapist can teach ways to protect your joints at home and at work, and for tasks like opening a jar or turning a tap, suggest aids or splints.
• A short-term splint, only after consulting your doctor (NIAMS).
• Dividing tasks and resting between them (pacing).
• Good posture. For osteoarthritis, the NHS recommends setting your desk chair to a suitable height and moving regularly instead of sitting for long periods.
• Suitable shoes. For osteoarthritis the NHS recommends supportive shoes, and for foot problems, seeing a foot specialist.
• Keeping hands and feet warm in Raynaud’s, and avoiding sudden changes in temperature (NHS).

Bones

If you take steroids, the ACR recommends weight-bearing activity such as walking on most days, quitting smoking and preventing falls to protect your bones. Whether weight-bearing exercise is right for you depends on the state of your joints; ask your doctor.

Diet and supplements

A balanced diet (for rheumatoid arthritis the NHS names the Mediterranean diet) and a healthy weight are good, but the NHS says there is no strong evidence that a particular diet affects the disease itself. Do not treat a diet or supplement as a replacement for medicine.

When should you contact your doctor?

• A new joint has become inflamed, or pain and swelling have got worse.
• Sudden, severe spinal pain. The Arthritis Foundation says that in people who take steroids or have rheumatoid arthritis or psoriatic arthritis, it may be a sign of a vertebral fracture and needs prompt attention.

For more urgent signs, see the “When should I call urgently?” guide.

First of all

This page is a general guide. A decision about any one person’s medicine depends on the disease, the drug and that person’s situation, and only a doctor can give it. If you have a rheumatic disease and want to become pregnant, talk to your doctor before trying. If you are pregnant and taking medicine, contact your doctor the same day and do not stop the medicine yourself. Some medicines carry a risk for the baby, and stopping without a plan can itself make the disease worse. The doctor must decide.

Why plan ahead?

• Controlling the disease matters. For lupus, NIAMS writes that most women can have a healthy pregnancy, provided the disease is well controlled and the pregnancy has been planned in advance with the doctor.
• Medicines may change. The ACR writes that sometimes, several months before pregnancy, medicines need to be switched to ones compatible with pregnancy. After that, there may be a period to see how the new medicine works and is tolerated. NIAMS also says all your medicines should be reviewed before pregnancy, because some lupus medicines are not safe in pregnancy.
• Your doctor decides the right time. The ACR says this depends on your disease activity, and the rheumatology team can tell you when it is best to try.

Who should be involved?

• The rheumatologist: weighs the risks of the medicines for you and your baby (ACR).
• The obstetrician: the ACR says they can tell you which medicines can be continued in pregnancy, and it is best for the rheumatologist and obstetrician to be in contact with each other. For lupus, NIAMS recommends working with a specialist experienced in high-risk pregnancy and lupus.
• The ACR says that in some patients the risk of blood clots is higher and a blood-thinning medicine may be needed, so this should be assessed. NIAMS also says close monitoring is more important for people who have low platelets, certain antibodies, high blood pressure, or lung, heart or kidney problems.

Known medicines: what the sources say

(Only what appears in the sources; opinion about your own medicine is for your doctor.)

• Methotrexate. The NHS writes that it is not recommended in pregnancy and can cause birth defects. Anyone who plans a pregnancy, woman or man, should talk to their doctor beforehand, because another medicine may need to replace it before contraception is stopped. The NHS says methotrexate may reduce fertility and can damage sperm in men and egg production in women. If you become pregnant unexpectedly, the NHS says not to stop the medicine yourself and to speak to your doctor as soon as possible. Call the same day, and do not let your next weekly dose come round before you have spoken to the doctor. The decision to continue or stop it is the doctor’s.
• Hydroxychloroquine. The NHS says it can be used in pregnancy if needed, and the doctor prescribes the lowest effective dose. It can also often be used while breastfeeding. But the decision is up to your doctor.
• Leflunomide, mycophenolate, cyclophosphamide and thalidomide. According to RheumNow’s summary of the 2020 ACR guideline, these should be stopped, with your doctor’s plan, before trying to conceive. Leflunomide stays in the body for a long time: if you have taken it in the past two years, tell your doctor before pregnancy so that its blood level can be checked or a plan made to clear it from the body.
• Immunosuppressive drugs in Behçet’s. The NHS writes that some of them can cause birth defects, and a pregnancy plan should be discussed with the doctor before starting.
• Prednisolone. The NHS says it can be used in pregnancy if needed, and your doctor will talk through the benefits and risks with you. Do not stop it yourself.
• Painkillers and anti-inflammatories. For spondylitis the NHS says paracetamol can be taken by pregnant or breastfeeding women. The NHS says to avoid ibuprofen in pregnancy unless a doctor or pharmacist advises it, and according to RheumNow’s summary, the ACR strongly recommends avoiding anti-inflammatories in the third trimester.

For other medicines (biologics and so on) we have no general ruling; you need to review your own list of medicines with your doctor.

Conditions and pregnancy

• Lupus. The NHS says lupus may cause complications in pregnancy, so see your doctor before trying so that the risks and medicines can be reviewed. NIAMS says estrogen-containing pills are not recommended for women who have antiphospholipid antibodies. Share your test results with your doctor before choosing a contraceptive method.
• Rheumatoid arthritis. NIAMS writes that symptoms may improve in pregnancy and flare after delivery.
• Sjögren’s syndrome. The NHS says if you plan a pregnancy or are in early pregnancy, talk to your care team, because the risk of complications such as miscarriage is higher.
• Scleroderma. The NHS says the risk of miscarriage or premature birth is slightly higher, but a pregnancy planned with the doctor, during a period when the disease is stable, can be successful.
• Flare symptoms. The ACR says pregnancy symptoms are sometimes similar to a disease flare; ask your rheumatologist which symptoms you should watch for.

Breastfeeding

The ACR says to ask your rheumatologist whether breastfeeding is recommended for you. Some medicines cannot be continued while breastfeeding, and the stress of breastfeeding can sometimes cause a flare. For methotrexate, the NHS says a small amount passes into breast milk and the decision about breastfeeding should be made with your doctor.

Follow-up during pregnancy

The ACR writes that some doctors see the patient every 4 to 6 weeks during pregnancy. Book regular appointments before and after delivery so that you do not run into problems later. Raise your birth plan with your doctor early, although details such as vaginal birth or cesarean are usually clarified in the later months.

Children and family

Autoimmune diseases sometimes run in families. The sources say that family history raises the risk (for rheumatoid arthritis, the NHS and NIAMS; for lupus, NIAMS), but determining the risk for each child or relative is a job for the doctor. Raise this at your visit.

First of all

In rheumatic diseases, most flares can be managed with your doctor at a regular appointment. But there are a few situations where you should not wait. This list does not cover every possible case. If you are worried or unsure, call your doctor or the emergency services. In Iran the emergency number is 115. If you feel unwell, do not drive yourself.

1. Call 115 (Iran’s emergency number) now or go to the emergency department

Chest pain

The NHS writes that sudden chest pain or pressure that does not go away (such as heaviness, tightness or burning), especially if it spreads to the arm, neck, jaw, abdomen or back, or comes with sweating, nausea, dizziness or shortness of breath, could be a heart attack and needs urgent hospital treatment. Rheumatoid arthritis and lupus may also involve the heart and lungs (NHS and NIAMS), but never put chest pain down to a joint disease; a doctor has to find the cause.

Severe or sudden shortness of breath

The NHS says that if breathing has become very difficult (you are gasping or cannot say a sentence), your chest feels heavy, your lips or skin have turned blue, gray or very pale, or you have sudden confusion, call the emergency services immediately.

Signs of a stroke

The NHS gives these as the main signs of a stroke: one side of the face suddenly droops and smiling is hard, one arm is weak or numb so you cannot keep both arms raised, or speech suddenly becomes slurred or confused. Giant cell arteritis and severe Behçet’s can lead to a stroke (NHS), and the Arthritis Foundation writes that JAK inhibitors raise the risk of stroke and blood clots.

Sudden loss of vision

The Arthritis Foundation counts sudden loss of vision among emergencies. About eye inflammation, the NHS also says that if you cannot see, go to the emergency department immediately.

Leg weakness, numbness around the genitals and anus, or loss of control of urine and stool

The NHS says back pain together with pain, tingling, weakness or numbness in both legs, loss of feeling around the genitals or anus, changes in urine and stool (such as difficulty urinating or incontinence), or a new change in genital sensation or sexual function, needs urgent action. Do not drive yourself. Call 115 or have someone take you to the emergency department.

Vomiting blood or black, tarry stools

On its ibuprofen page, the NHS gives vomiting blood and black, sticky, tar-like stools as signs of bleeding in the stomach. Anti-inflammatories and steroids may raise the risk of stomach ulcers (NHS). The Arthritis Foundation also counts uncontrolled bleeding among emergencies.

Severe allergic reaction

For methotrexate, the NHS says sudden swelling of the lips, mouth, throat or tongue, fast or difficult breathing, a tight throat, or sudden faintness and confusion are signs of an emergency.

Thoughts of harming yourself

The NHS says mental changes may occur with steroid use. If you have thoughts of harming yourself or ending your life, go to the emergency department right away.

2. Contact your doctor or the emergency department the same day

If you cannot reach a doctor the same day, go to the emergency department and do not wait until tomorrow.

A joint is suddenly hot, red, swollen and very painful, with or without a fever

The NHS says severe, sudden pain in one joint, swelling around a joint, a change in the color of the skin over it, difficulty moving it, or joint pain with fever, chills and feeling unwell, could be a sign of septic arthritis (a joint infection) and needs urgent treatment. Having no fever is not a reason to wait. The risk is higher in people with rheumatoid arthritis, a weakened immune system or an artificial joint, and after joint surgery. The Arthritis Foundation also lists unusual joint pain and swelling, especially with fever, among urgent cases.

Fever or signs of infection while taking an immunosuppressive drug

The Arthritis Foundation lists the signs you should report to your doctor as: chills, fever, sweating, sore throat, cough, burning or frequent urination, diarrhea or abdominal pain, rash or a painful sore, and warm, red skin. For methotrexate, the NHS also treats fever, chills, muscle aches and sore throat as possible signs of infection and says to tell your doctor or a medical center immediately. The same caution applies to any drug that weakens the immune system, including steroids and biologics. Do not stop the medicine yourself; ask your doctor what to do.

Over 50, a new headache at the temple, jaw pain when chewing, or vision problems

About inflammation of the temporal artery (giant cell arteritis), the NHS says to take seriously repeated severe headaches, pain or tenderness in the temple and scalp, jaw pain when eating or talking, and double vision or loss of sight in one or both eyes. Without prompt treatment it can lead to stroke or blindness. The NHS says a doctor must see you urgently, and any vision problem needs a same-day examination by a hospital eye doctor. If you have a vision problem along with these signs, do not wait for an appointment: go to a hospital emergency department now.

A red, painful eye

On its uveitis page, the NHS says eye pain, sensitivity to light, a change in vision such as blurring or flashes, and severe redness of the eye (one or both) need urgent assessment. Go to an eye doctor or an eye emergency department the same day. If you cannot see, follow section 1. This can be related to the underlying disease in spondylitis, Behçet’s and vasculitis.

A blackened, ulcerated or painful fingertip

SRUK writes that finger ulcers (digital ulcers) in scleroderma heal slowly and become infected easily. Signs of infection are more pain, redness, pus and swelling of the fingertip. SRUK’s advice is “If in doubt get it checked out early”. It also says gangrene is rare but possible. Show a blackened or ulcerated fingertip to a doctor the same day.

In lupus: foamy urine, new leg swelling or high blood pressure

NIDDK considers foamy urine, swelling of the legs and ankles, and high blood pressure as possible signs of kidney involvement in lupus, and says early diagnosis and treatment can protect the kidneys. NIAMS also names swelling of the legs or around the eyes among the signs of lupus. Tell your doctor about these the same day. Chest pain or sudden shortness of breath in lupus belongs in section 1.

New swelling and pain in one leg

The NHS gives throbbing pain and swelling in one leg, usually in the calf or thigh, as signs of a blood clot in a leg vein. The Arthritis Foundation writes that JAK inhibitors raise the risk of clots, and the ACR says some people with rheumatic disease have a higher risk of clots. If you also have shortness of breath or chest pain, call 115.

A serious medicine side effect

About methotrexate, the NHS says to tell your doctor immediately about: yellowing of the eyes or skin, a persistent cough, chest pain or shortness of breath, swelling of the hands, ankles or feet, a change in how often you urinate or not urinating at all, bleeding gums, blood in the urine and unexplained bruising. For hydroxychloroquine, the NHS also counts spots, sores, blisters or peeling skin with a fever as a serious side effect. Do not decide on your own; ask the same day what to do about your next dose. If the chest pain or shortness of breath is sudden, follow section 1.

Sudden spinal pain

The Arthritis Foundation says sudden spinal pain may be a vertebral fracture, and people who have rheumatoid arthritis or psoriatic arthritis or take steroids are more at risk. See a doctor the same day. If it comes with weakness or numbness in the legs or a problem passing urine, follow section 1.

Feeling unwell after stopping, reducing or forgetting steroids

The NHS says suddenly stopping steroids can make you very ill (extreme tiredness, nausea and vomiting, dizziness, loss of appetite). Its prednisolone page also lists vomiting, muscle weakness, dizziness and feeling faint among the signs of adrenal insufficiency. If you have stopped the medicine or forgotten it and feel unwell, or vomiting means you cannot keep your tablets down, see a doctor or go to the emergency department the same day. If you have repeated vomiting, severe dizziness, drowsiness, confusion or you faint, call 115 and say that you take steroids. On its Addison’s disease page, the NHS gives these as signs of adrenal crisis, which is an emergency.

3. See your doctor as soon as you can (not an emergency)

• A flare that is worse than usual, or symptoms that do not improve with your usual routine.
• Troublesome medicine side effects not listed in sections 1 and 2, such as persistent nausea or a mild rash.

If you are not sure

Call. “It may be nothing, but I’m worried” is reason enough to call. When you call, have these ready: the names of the medicines you take, when the symptoms started, and whether you have a fever. In the emergency department, always say what medicines you take, especially steroids.