Lupus
When people say lupus they nearly always mean systemic lupus erythematosus, a disease in which the body's defence system stops telling its own tissues from…
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Medicines commonly prescribed for Lupus
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: TABLET, 200 mgActive substance: hydroxychloroquineManufacturer: Products And Technology S.L.Prescription requiredDosage form: TABLET, 75 mgActive substance: azathioprineManufacturer: Dr. Falk Pharma GmbhPrescription requiredDosage form: ORAL SOLUTION/SUSPENSION, 4 mg/mlActive substance: prednisoloneManufacturer: Laboratorio Aldo Union S.L.Prescription required
When people say lupus they nearly always mean systemic lupus erythematosus, a disease in which the body's defence system stops telling its own tissues from foreign ones and starts damaging them. Hence its defining feature: it is not tied to a single organ, and in two different people it looks like two different illnesses — joints and skin in one, kidneys in another, blood and vessels in a third. Lupus is not infectious and cannot be passed on through contact. It still cannot be removed for good, but it stopped being a sentence long ago: with well-chosen treatment the great majority of people work, travel and have children. The difference between a severe course and a quiet one comes down almost entirely to two things — how early the disease was found and how regularly it is monitored afterwards.
How lupus shows itself
The complaints almost never arrive together. For years a person lives with the sense that something is not quite right, and each complaint gets its own separate explanation: tiredness from work, joints from the weather, a rash from the sun. What should raise suspicion is not any single symptom but the combination, and the fact that it drags on for months.
- Pain and morning stiffness in the joints, most often in the hands, wrists and knees and symmetrical on both sides. Unlike rheumatoid arthritis, lupus does not usually destroy the joints, though they hurt a great deal.
- Tiredness that sleep does not fix and that bears no relation to how much you have done. It is the commonest complaint and the hardest one for other people to grasp.
- A rash across the cheeks and the bridge of the nose that spares the creases beside the nostrils — the butterfly rash. It appears or worsens after sun exposure.
- Sharp sensitivity to ultraviolet light: a short walk brings out a rash, burning skin and sometimes several days of feeling generally unwell.
- Painless ulcers in the mouth and nose, hair coming out in handfuls, persistent round scaly patches on the scalp and face.
- Fever with no sign of infection, enlarged lymph nodes, weight loss.
- Fingers turning white and then blue in the cold or with emotional strain, painful as they warm up again — Raynaud's phenomenon.
- Chest pain that worsens on breathing in and eases when leaning forward: inflammation of the membranes around the heart or lungs.
- Swelling of the lower legs and around the eyes in the morning, urine that froths — this is how the kidneys speak up.
- Headaches, poorer memory and concentration, low mood and anxiety. These are not a matter of temperament; they belong to the illness.
Flares and quiet spells
Lupus travels in waves: weeks or months of relative calm are followed by a flare in which the familiar symptoms return and intensify and sometimes new ones join them. Then everything settles again. In some people there are no clear waves at all and the disease smoulders steadily.
A flare rarely starts from nothing. The usual triggers are sunlight and sunbeds, any infection, heavy stress and lack of sleep, childbirth and the months that follow it, and stopping medication on your own — the most galling cause of all, because it is entirely preventable. It helps to learn your own warning signs: in most people, aching, listlessness and a slight temperature come back a few days before a flare. Telling the doctor at that point is far easier than dealing with a fully developed flare a fortnight later.
Where lupus comes from
There is no single cause: there is a predisposition written into the genes and outside nudges that set an already assembled mechanism going. Women are affected roughly nine times as often as men, and the illness usually begins in the childbearing years, which is why sex hormones are suspected of playing a part. Lupus is both commoner and more severe in people of African, Caribbean and Asian descent. Among external factors, ultraviolet light, some past viral infections and smoking are named with confidence.
Drug-induced lupus stands apart. Certain medicines — some drugs for heart rhythm and for high blood pressure, tuberculosis treatments, a few antibiotics and some modern anti-inflammatory agents used in rheumatic disease — produce a very similar picture of joint pain, fever and rash. The difference is fundamental: once the drug is stopped everything gradually resolves, and lifelong treatment is not needed. There is also a skin-limited form in which only the skin is involved and which may go years without becoming systemic.
The organs that are watched most closely
The kidneys. Lupus nephritis develops in around a third of patients and is dangerous precisely because for a long time it produces no sensation at all: no pain, no change in how much urine you pass. The only way to catch it in time is an ordinary urine test done on schedule, even when you feel perfectly well. That is why your doctor asks for tests during the calm periods too.
Blood clotting. About a third of people with lupus are found to carry antiphospholipid antibodies. These make the blood prone to clotting and are the most dangerous part of the disease: deep vein thrombosis, a blocked lung artery, a stroke at an age when nobody expects one, repeated early miscarriages. The antibodies are picked up by an ordinary blood test and the risk can be lowered with medication, so ask your doctor whether you have been checked for them.
The heart and blood vessels. Years of inflammation speed up hardening of the arteries, and heart attacks in lupus arrive years earlier than in others of the same age. Blood pressure, cholesterol, weight and giving up smoking are therefore not general advice here but part of the treatment.
Resistance to infection. Both the disease and the drugs that hold it down lower your defences: an infection unfolds faster and needs to be acted on sooner than in a healthy person.
How the diagnosis is made
There is no single test that confirms lupus, and that is the main reason the diagnosis often comes several years after the first complaints. The doctor assembles the picture from symptoms, examination and laboratory results.
The starting point is usually antinuclear antibodies. This test is positive in almost everyone with lupus, but it is also positive in perfectly healthy people, women especially — on its own it proves nothing and merely opens or closes the search. More telling are antibodies to double-stranded DNA and to the Sm antigen; a rise in these together with a fall in complement proteins signals that the disease is active, and they are used afterwards to follow the treatment. The blood count often shows anaemia and low white cells and platelets. There is also a detail that is useful in practice: in lupus the sedimentation rate is high while C-reactive protein usually stays normal, whereas in infection it is CRP that climbs — which helps to tell a flare from an ordinary cold.
Next the urine is checked for protein and cells, antiphospholipid antibodies are measured, and if the heart, lungs or nervous system are involved, imaging and functional tests follow. If protein in the urine persists, a kidney biopsy is arranged: it shows which type of nephritis is present, and that determines the choice of drugs directly.
What the treatment involves
The aim is to put out the inflammation, hold the disease quiet, and pay as little as possible for it in side effects of the drugs themselves.
- Hydroxychloroquine is the backbone of treatment: it is prescribed to virtually everyone and taken for years, including when nothing is troubling you. It spaces out flares, protects the kidneys, lowers the risk of clots and lengthens life. It calls for an eye check every year to eighteen months.
- Steroid tablets put out inflammation faster than anything else and are irreplaceable in a severe flare. But long-term use is expensive: thinning bones, diabetes, weight gain, cataracts, infections. The dose is therefore reduced as soon as the disease loosens its grip and is not left high just in case.
- Immunosuppressants are added so that steroids can be withdrawn and remission held; when kidneys or the nervous system are involved they move to the front line.
- Biological medicines are used when standard treatment is not enough or will not allow the steroid dose to come down.
Pain relief deserves a paragraph of its own. Non-steroidal anti-inflammatory drugs do help with joint pain, but in lupus they are prescribed cautiously: they worsen blood flow through the kidneys and push blood pressure up, and the kidney is exactly the vulnerable point here. If you have nephritis, raised blood pressure, or you take blood-thinning medication, discuss pain relief with your doctor; in many cases paracetamol is the safer choice.
None of these medicines should be stopped on your own even when you feel well: abrupt withdrawal is a common cause of severe flares. Vaccination is arranged in advance — people with lupus need protection against influenza, pneumococcus and other infections, but live vaccines cannot be given while the immune system is being suppressed.
When urgent help is needed
Call an ambulance (in European countries, on the single number 112) if there is:
- sudden weakness of the arm and leg on one side, a drooping face, slurred speech or sudden loss of vision — in lupus stroke happens in young people too, and this is not an abstract precaution here;
- a seizure, confusion, delirium or hallucinations;
- severe chest pain, rapidly increasing breathlessness, blood when coughing;
- pain, swelling and redness in one calf — this is how a deep vein thrombosis begins;
- a temperature of 38 °C or above with shivering while you are on medication that suppresses the immune system;
- a severe headache with vomiting, dislike of bright light and inability to bring the chin to the chest;
- large bruises without injury, bleeding gums, black tarry stools.
Contact a doctor the same day, rather than waiting for an appointment next week, if the amount of urine drops sharply, if swelling of the face and legs is growing fast, if there is severe abdominal pain, if a new rash with blisters or ulcers appears, or if a temperature persists for several days with no obvious cause.
Sunlight, energy and everyday habits
Protection from ultraviolet light is the single most effective thing you can do yourself. High-factor sunscreen goes on every day, including cloudy days and winter, and is reapplied through the day; add a wide-brimmed hat, long sleeves and shade in the middle of the day. Sunbeds are ruled out entirely. Some people tolerate halogen and fluorescent lighting badly at close range — if you notice that link, change the bulbs. Because you are shielding yourself from the sun all the time, vitamin D is nearly always short, so its level is measured and topped up.
Smoking makes lupus run a worse course and gets in the way of the main drug, so giving up pays off more here than with many other diagnoses. Movement is necessary but within your means: unhurried walking, swimming and stretching reduce pain and fatigue, while punishing workouts provoke a setback. Learn to plan the day's energy in advance instead of paying for one good morning with three bad days. On steroids the bones need attention of their own: calcium, vitamin D and weight-bearing exercise.
Pregnancy and contraception
Pregnancy with lupus is possible and usually ends well, but it is planned in advance rather than announced as a fact. The best time to conceive is when the disease has been quiet for at least six months and the kidneys are working steadily: a flare during pregnancy is more severe and responds less well to treatment. Some drugs are incompatible with pregnancy and are swapped before conception, whereas hydroxychloroquine is usually continued, because stopping it raises the risk of a flare. A rheumatologist and an obstetrician follow the pregnancy together, checking blood pressure, urine protein and the baby's growth more often than usual, because lupus carries a higher risk of pre-eclampsia and premature birth.
Two things are worth discussing separately. Antibodies to the Ro and La antigens cross the placenta and occasionally disturb the working of the baby's heart: if they are present, the rhythm is watched on extra ultrasound scans. With antiphospholipid antibodies the pregnancy is managed on medication that reduces clotting. As for contraception, oestrogen-containing methods are unsuitable during active disease and in the presence of those same antibodies; progestogen-only pills, implants and intrauterine devices are safer in these situations.
Online consultation
A remote consultation suits this illness well, because much of the work with it is conversation and going through test results. Before the diagnosis, the doctor gathers up the complaints you have been explaining one by one and says whether a systemic disease should be looked for behind them and which investigations to begin with. Once the diagnosis is made, results are convenient to interpret online: what a rise in anti-DNA antibodies means, why the complement has fallen, whether there is protein in the urine and whether it is time to change treatment. The same appointment covers a flare that is starting, side effects, reducing the steroid dose, preparing for pregnancy, the choice of contraception and the vaccination schedule. And separately the doctor will name the signs that mean not writing in to the consultation but calling an ambulance.
This material is for information only and does not replace medical advice.
Consult with a doctor about Lupus
Discuss your symptoms and possible next steps with a doctor online.
Online doctors for Lupus
Discuss your symptoms and possible next steps for Lupus with a doctor online.
