Patient guide

What should you bring?

• All earlier test results, even old ones. The change over time matters.
• Reports and the images themselves from X-rays, ultrasound, MRI and CT
• A list of all your medicines, including supplements and herbal remedies. Bringing the boxes is even better.
• The names of medicines you took before, and how they worked or what side effects they had
• Your insurance booklet
• Photos of joint swelling or rashes, in case they are not there on the day

Keep a note of your symptoms

For a few days before the visit, write down:

• Which joints hurt and what the pain is like
• When it began and how it has changed
• How long morning stiffness lasts
• What makes it better or worse
• What has become hard to do
• Other signs, even if they seem unrelated: mouth ulcers, a red eye, rashes, hair loss, fever, dry eyes and mouth
• Whether anyone in your family has a similar illness

What happens in the visit?

The doctor asks about past illnesses, operations, allergies and medicines. The health of your relatives matters too, because some of these diseases run in families. The examination is often the most important part: joints are checked for swelling and tenderness, and where it hurts is a useful guide.

If needed, blood tests and imaging are ordered.

What if I do not get a diagnosis that day?

Do not be discouraged. The doctor may wait for test results. Many autoimmune diseases take time to become clear.

Bring someone with you

You will hear a lot at the first visit. The person with you may catch something you missed or remember a question you forgot. Write your questions down beforehand too, and ask the most important ones first.

Questions you could ask

• What diseases are you thinking of?
• What tests are needed, and why?
• If I start a medicine, how long until it works?
• Which side effects should I report early?
• When is my next visit?

Why so many tests?

Regular follow-up helps your doctor see how the disease is going, how well the medicines work and whether any side effect has appeared. Your test schedule depends on your disease and your medicine, and your doctor sets it.

What is each test for?

• ESR and CRP: show inflammation and help measure disease activity and response to treatment.
• Blood count (CBC): shows anaemia and the effect of medicines on blood cells.
• Liver and kidney tests: some medicines affect these organs.
• Urine test: especially in lupus, to find kidney problems early.
• RF, anti-CCP and ANA: mostly used to help with the diagnosis.

A single number has no full meaning alone. Results have to be read with your symptoms and examination, so do not change your medicine because of a result.

Eye checks with hydroxychloroquine

People who take this medicine for a long time or who are at higher risk of eye problems need regular eye checks. Report constant blurred vision, changes in how you see colours, or sensitivity to light.

Before starting some medicines

Before some medicines, especially biologics, tests such as checks for tuberculosis and hepatitis B are needed. Tell your doctor about any past infection, liver or kidney disease, or cancer.

A few practical points

• Keep your results in one folder, or keep photos of them on your phone.
• Get your test form ready before your visit so the results are at hand.
• If getting to a lab is hard, blood collection at home is part of the support network.

Be patient

Many of these medicines take several weeks to months to work. Not feeling better in the first days does not mean a medicine has failed. If you want to stop a medicine, talk to your doctor first.

Methotrexate: weekly, not daily

This is the most important rule. When methotrexate is prescribed for inflammatory diseases, it is usually taken once a week, always on the same day. Taking it daily by mistake is dangerous and can be fatal.

• Write the day on the box or set a reminder on your phone.
• Keep its box apart from your daily medicines.
• If you forget, take it the next day or the day after. If it is more than two days late, contact your doctor.
• Never take two doses together.
• If you take more than prescribed or take it daily by mistake, get help at once and bring the box.
• Your doctor usually prescribes folic acid as well. Ask which day to take it.
• Your skin may become sensitive to the sun, so use sunscreen.

Steroids: do not stop suddenly

Prednisolone and other steroids help a great deal with inflammation, but stopping them suddenly can cause withdrawal symptoms or make the disease worse. Your doctor lowers the dose step by step. Tell your doctor if you have been in contact with someone with chickenpox, shingles or measles.

Hydroxychloroquine

It takes several weeks to work. If you miss a dose, take it as soon as you remember, unless your next dose is nearly due. Do not take two doses together.

Infection and medicines that lower immunity

These medicines raise the risk of infection. Report fever, chills, sore throat or painful urination early. Ask before any vaccine, especially live vaccines.

Other medicines

Ask before you take a painkiller, antibiotic, herbal remedy or supplement. Some of them interact with rheumatology medicines. For example, do not take ibuprofen on your own alongside methotrexate. Tell every doctor, dentist and pharmacist what you take.

When should you call urgently?

With methotrexate, report these at once:

• Yellow skin or eyes
• A persistent cough, breathlessness or chest pain
• Fever, chills, muscle aches or sore throat
• Bleeding gums, blood in urine, vomiting blood or unexplained bruising
• Swollen hands or feet, or passing less urine

Swelling of the lips, tongue or throat with trouble breathing is an emergency. Call 115.

What is a flare?

A period when symptoms get worse: more pain and stiffness, tiredness and sometimes rashes or a mild fever. Flares are hard to predict, and in lupus, for example, the reason is not always known. With treatment, they usually become less frequent.

What should you do?

• Keep taking your medicines. Your doctor will change them if needed.
• Rest a little more. Several short rests are better than long periods in bed.
• Do less that day and space your tasks out.
• Keep up gentle movement so the joints do not stiffen.
• Write your symptoms down with the date, and take photos of joint swelling or rashes.

Most mild flares settle with rest and pacing. If a few days pass and you are no better, or this flare differs from earlier ones, call your doctor.

What not to do on your own

• Do not start steroids or change their dose.
• Do not take an extra or herbal remedy someone suggests.
• Do not stop your main medicine because it “has not worked”.

Is it a flare or something else?

Not every pain is a flare. Do not mistake these for an ordinary flare:

• One hot, red, very painful joint, especially with a fever: it may be a joint infection.
• Sudden spine pain: it may be a fracture from osteoporosis, especially if you take steroids.
• Fever and chills on medicines that lower immunity: it may be an infection.

In these cases, get help the same day. See the warning signs.

For your follow-up visit

Bring your notes: when the flare began, what happened before it, how long it lasted and what helped. They help your doctor see whether your current treatment is enough.

Talk early

Tell your doctor about your plans for children early, and update them if your plans change. Your doctor can help you see how active the disease is and when pregnancy would be safest.

Medicines

Some medicines are safer in pregnancy, and others must be stopped before it.

• Methotrexate is not recommended in pregnancy, because it can cause birth defects. Talk to your doctor about changing medicine before you stop contraception.
• Mycophenolate also calls for reliable contraception.
• Ask your doctor about any other medicine you take.

Men who take medicines should also ask their doctor before trying for a baby with their partner. Methotrexate may affect fertility in both women and men.

If you become pregnant unexpectedly

If you become pregnant while taking methotrexate, do not stop it on your own, and speak to your doctor as soon as possible. For other medicines too, call at once and do not decide alone.

During pregnancy

• The symptoms of pregnancy can sometimes look like a flare. Ask your doctor what to watch for.
• Some patients have a higher risk of blood clots and may need a blood thinner. This is something to check with your doctor.
• Regular visits with your rheumatologist and obstetrician are needed during pregnancy and after birth. Arrange them ahead of time.

Breastfeeding

Some medicines are compatible with breastfeeding and others are not. Ask your doctor before the birth. If you want to breastfeed, settle your medicine plan for after the birth early.

Call 115 or go to an emergency department now

• Sudden loss of vision
• Severe chest pain or severe breathlessness
• Weakness or numbness on one side of the body, a drooping face or trouble speaking
• Bleeding that will not stop
• Sudden swelling of the lips, tongue or throat with trouble breathing
• Back pain with weakness or numbness in both legs, numbness around the genitals, or new trouble with bladder or bowels

Get help the same day

• Joint: one joint that suddenly becomes very painful, hot, swollen or red and that you cannot move, especially with a fever or shivers. A joint infection needs fast treatment.
• Fever: fever, chills, sore throat or painful urination while on medicines that lower immunity or biologics.
• Head and temples: a new, severe headache, pain at the temples or scalp, jaw pain when chewing, or double vision, especially at an older age. These may come from giant cell arteritis, which can cause blindness.
• Eye: eye pain, very red eyes, sensitivity to light or blurred vision.
• Kidney: swollen legs or face, foamy urine, or passing less urine.
• Liver and blood: yellow skin or eyes, bleeding gums, unexplained bruising, blood in urine.
• Lungs: a persistent cough or new breathlessness.
• Abdomen: sudden severe abdominal pain.
• Spine: sudden severe back or spine pain.
• Medicine: taking methotrexate daily by mistake, or more than prescribed.

Who should I call?

The doctor’s or support number is for arranging care, not for emergencies. If you are unwell or nobody answers, do not wait: go to an emergency department.

When you go, say what disease you have and take your medicine list. If you take steroids, be sure to tell the team.

When is there no rush?

Most mild flares settle with rest and pacing. An ordinary cold is not a warning either, unless it lasts longer than usual or comes with a fever. In these cases, call your doctor or support during office hours.