Systemic lupus erythematosus

How it may present

• Persistent fatigue and pain or swelling (edema) of the joints.
• Skin rashes that worsen with sun, often across the nose and cheeks.
• Mouth sores or hair loss.
• Color change of the fingers in the cold (Raynaud’s phenomenon).
• Leg edema or changes in urine tests.

These signs may have other causes. Kidney involvement can be detected on tests even without pain or obvious symptoms.

How organs can be affected without obvious symptoms

Autoantibodies and inflammatory processes can damage different tissues. In the kidneys, inflammation (lupus nephritis) can affect the glomerular filters and cause protein or blood to pass into the urine (proteinuria and hematuria). In the early stages the patient may feel well, so urine tests and kidney function matter even when skin or joint symptoms are quiet. Lupus can also affect the pericardium, the pleura, the blood cells (anemia, low platelets) and the nervous system.

Organ involvement is not the same in every patient. The doctor assesses whether a symptom comes from lupus, another disease, an infection or the treatment. A fever, for example, calls for this distinction, because adding immunosuppression to an infection may be inappropriate.

How assessment is done and how autoantibodies are interpreted

The diagnosis rests on a combination of symptoms, examination and tests. A blood count, kidney function, urine tests, autoantibodies (anti-dsDNA, anti-Sm) and complement levels may be requested according to suspicion. Examinations of the heart, lungs or other organs are recommended according to findings.

ANA is sensitive for many cases of lupus, but may also be positive in other conditions or in people without autoimmune disease; a positive ANA alone is not enough for the diagnosis of lupus. Results do not replace symptoms, examination and assessment of the organs. Diagnosis and disease activity are two different questions: a patient may have a confirmed diagnosis but no active inflammation at the time of the check. Likewise, pain or fatigue do not always mean a stronger therapy is needed; they may call for investigation of other causes.

Treatment and balancing control with safety

Medication is tailored to the organs involved and the activity of the disease. It may include hydroxychloroquine (the basis of treatment for most patients, which reduces flares), corticosteroids or drugs that control the immune response. For some drugs special checks are needed, including eye examination. Treatment aims at stable control of inflammation and protection of the organs while limiting side effects. Corticosteroids may be necessary in certain situations, but prolonged use requires assessment of risks and an effort toward the lowest suitable dose.

Medicines that affect immunity require individualized monitoring; infections, vaccinations, bone health and fertility are discussed.

Daily care: sun, infections, bones and heart

Ultraviolet radiation can trigger lupus flares, both on the skin and systemically. Use broad-spectrum sunscreen with a high factor (SPF 50) every day, even on cloudy days, reapply every two hours when outdoors, wear long sleeves and a hat and avoid the hours of strong sun. Some fluorescent lights and copiers emit small amounts of UV, but in practical terms the sun is what matters.

Because the disease and its treatment affect immunity, infections call for attention. Hand washing, vaccinations recommended by the doctor (seasonal influenza, pneumococcus) and prompt contact with the team for fever or urinary symptoms are practical measures. Live-virus vaccines are assessed separately during immunosuppression. Bones need protection, especially if you have taken corticosteroids for a long time: adequate dietary calcium, vitamin D according to measurement and weight-bearing activity. Lupus is associated with higher cardiovascular risk, so blood pressure, lipids and glucose are checked regularly and smoking is stopped; smoking also reduces the effect of hydroxychloroquine.

Fatigue is the most frequent complaint and does not always correspond to disease activity. Gradual physical activity, regular sleep and treatment of depression or anemia, when present, reduce it. Keeping a symptom diary helps the doctor distinguish a true flare from ordinary tiredness.

Checks that are needed and questions for the doctor

Each visit usually includes blood pressure, weight, examination of the skin and joints, a blood count, creatinine, a urinalysis with the protein/creatinine ratio and, as appropriate, anti-dsDNA and complement. Patients taking hydroxychloroquine are checked by an eye doctor periodically, because long-term use can affect the retina; most start annual screening after several years of treatment. Bring the list of medicines and earlier reports.

Useful questions: which organs are involved and what is the goal of treatment; how long will I take hydroxychloroquine; how do I reduce the corticosteroid dose; which infections and vaccinations should be planned; when can I plan a pregnancy; which symptoms call for quick contact (new swelling, foamy or bloody urine, chest pain with breathing, unusual severe headache).

Daily care, pregnancy and follow-up

Protect yourself from the sun (high-factor sunscreen, a hat, avoiding direct sun), do not smoke and adapt activity to your condition. Do not change treatment without consultation. Planning a pregnancy is discussed beforehand so that the disease and the medicines can be assessed in time; some drugs need adjusting before pregnancy, while uncontrolled stopping of suitable therapy can increase disease activity. Planning is done together with the rheumatologist and the gynecologist (family planning).

Check-ups assess symptoms, tests and treatment effects every 6 months to a year, or sooner when the doctor considers it reasonable. Note new changes and bring earlier reports; even in periods when you feel well, continue the checks according to plan.

Care at Tirana Polyclinic: we offer rheumatology consultation, laboratory tests as indicated and coordination with nephrology, cardiology and other specialties. We also interpret examinations performed outside the clinic.