Patient handout

Systemic lupus erythematosus (chronic, treat-to-target)

PRODUCTION

1. Your condition

This handout is for systemic lupus erythematosus (chronic, treat-to-target). Your care team identified this based on: multi-system features (rash + joints + serositis + cytopenia) [2019 eular/acr aringer ard 2019].

Other reasons your team may use this plan: ana ≥1:80 with compatible clinical features [2019 eular/acr entry criterion]; known sle — routine treat-to-target visit [eular 2023 fanouriakis].

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
hydroxychloroquine	—	—	—	2023 EULAR strong: 5 mg/kg actual weight for ALL SLE patients; reduces flares, mortality, thrombosis
methotrexate	—	—	—	Steroid-sparing for arthritis / cutaneous predominance [EULAR 2023 Fanouriakis]
mycophenolate_mofetil	—	—	—	2024 ACR/EULAR LN preferred induction + maintenance
azathioprine	—	—	—	Maintenance + pregnancy-compatible [EULAR 2023; 2024 ACR/EULAR LN]
belimumab	—	—	—	BLISS-52/76 + BLISS-LN; 2023 EULAR strong add-on for active SLE / lupus nephritis
anifrolumab	—	—	—	TULIP-1/2 NEJM 2020 / Lancet RD 2019
voclosporin	—	—	—	AURORA / AURORA-2 — improved renal response when added to MMF (ACR 2024)
cyclophosphamide	—	—	—	Euro-Lupus low-dose IV pulse for severe induction [Houssiau ARD 2002; EULAR 2023]
rituximab	—	—	—	Off-label rescue for refractory cytopenia + renal disease [EULAR 2023 conditional]

Plan: Chronic disease-modifying therapy (treat-to-target) (ACR 2024)

3. Your action plan

Use these zones to know what to do based on how you feel.

GREEN — Stable / in remission (ACR 2024)

If you have:

No new symptoms
Stable labs
Taking medications as prescribed

Do this:

Take HCQ every day (do not skip)
Sun protection always (SPF 50+)
Keep follow-up labs every 3 months
Annual eye exam (or every 6-12 months after 5 years on HCQ)
Vaccinations up to date — never live vaccine on high immunosuppression
Quit smoking; manage BP, weight, lipids
Plan pregnancy when stable ≥6 months on compatible drugs

YELLOW — Possible flare or warning sign (ACR 2024)

If you have:

New rash, joint pain, oral ulcers, fatigue
New foamy urine (proteinuria)
New chest pain on breathing (pleuritis)
Hair loss
Recent missed doses
New medication started

Do this:

Continue current medications
Call your rheumatologist within 1-3 days
Avoid sun exposure
Go to lab early for CBC, UA, UPCR, complement, dsDNA

Call your provider if:

Symptoms not improving in 3-5 days
New proteinuria
Any new cardiopulmonary symptom

RED — Severe flare or emergency (ACR 2024)

If you have:

Severe headache, seizure, confusion, weakness
Cough up blood, severe shortness of breath
Severe abdominal pain, vomiting
New thrombosis (leg pain/swelling, chest pain, neuro deficit)
Severe rash with fever (DRESS, vasculitis)
Pregnancy bleed or pre-eclampsia symptoms
High fever + immunosuppression

Do this:

Go to ED immediately
Bring medication list including HCQ + immunosuppressants
Tell ED about your SLE, immunosuppression, and APS status

Call your provider if:

Always go to ED for these symptoms

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

New UPCR >0.5 g/g or active urine sediment on routine surveillance [2024 ACR/EULAR LN biopsy threshold]
New venous or arterial thrombosis in SLE patient with APS [ACR 2024]
Pregnancy detected in SLE patient with active disease or on teratogen [EULAR 2023 Fanouriakis]
Hospitalised infection, opportunistic infection, or sepsis in SLE patient [EULAR 2023]

5. Follow-up

LLDAS / DORIS targeted; minimise glucocorticoids ≤7.5 mg/d after first year [EULAR 2023]; pregnancy planning when stable ≥6 months on compatible drugs; transition planning for adolescents

6. Sources

Guideline: 2023 EULAR Recommendations for the Management of SLE (Fanouriakis et al, Ann Rheum Dis 2024) + 2024 ACR/EULAR Lupus Nephritis Guideline + 2019 EULAR/ACR SLE Classification Criteria + KDIGO 2021 GN