How do I know if I'm experiencing a flare of my Sjögren's syndrome while taking Plaquenil (hydroxychloroquine)?

Recognizing a Sjögren's Syndrome Flare While on Plaquenil

You should monitor for worsening of your core sicca symptoms (increased eye/mouth dryness), new or worsening systemic symptoms (joint pain, fatigue, rash), and red flag symptoms that require urgent evaluation (unexplained weight loss, fevers, night sweats, or new lymph node swelling). 1, 2

Core Symptoms That Indicate Disease Activity

Sicca Symptom Worsening

• Increased oral dryness requiring more frequent water sipping, new difficulty swallowing dry foods, burning mouth sensation, or development of angular cheilitis (painful sores at mouth corners) 3, 1
• Worsening eye symptoms including increased foreign body sensation, light sensitivity becoming more severe, needing artificial tears more frequently, or blurry vision 3, 1
• New or worsening parotid or submandibular gland swelling along your jaw line 1, 4

Systemic Manifestations of Active Disease

• Escalating joint or muscle pain (arthralgias/myalgias) beyond your baseline 1, 2
• Worsening fatigue that is extreme and limiting your daily activities 1, 2
• New skin manifestations including palpable purpura (raised purple spots), non-palpable purpura, or urticaria-like lesions, which can indicate vasculitis 5
• Raynaud's phenomenon becoming more frequent or severe (fingers turning pale/blue in cold) 1

Pulmonary Symptoms Requiring Attention

• New or worsening chronic dry cough lasting more than 8 weeks, as approximately 38% of Sjögren's patients develop chronic cough 3, 4
• Progressive shortness of breath with exertion or at rest, which may indicate interstitial lung disease development 3
• Increased sputum production or chest pain 3, 4

Red Flag Symptoms Requiring Urgent Evaluation

These symptoms mandate immediate rheumatology contact as they may indicate lymphoma development (5% lifetime risk) or serious systemic complications: 1, 2

• Unexplained weight loss 3, 4
• Fevers or night sweats 3, 2
• New lymphadenopathy (swollen lymph nodes), particularly in the head and neck region 3, 4
• Progressive parotid gland enlargement that is persistent 4

Neurological Warning Signs

• New numbness, tingling, or burning pain in your feet, legs, or hands (peripheral neuropathy) 1
• Significant muscle weakness limiting mobility or self-care 1

Important Context About Plaquenil

While you're on hydroxychloroquine (Plaquenil), it's important to understand that the evidence for its effectiveness in improving Sjögren's symptoms is mixed. The largest randomized trial (JOQUER) showed no overall benefit for dryness, pain, or fatigue compared to placebo 6. However, a retrospective analysis suggested that patients with high symptom burden may experience some improvement in overall symptom scores within 12 weeks 7. This means that worsening symptoms while on Plaquenil doesn't necessarily indicate treatment failure—it may reflect disease progression that requires additional interventions 6, 7.

Monitoring Strategy

You should track these parameters regularly: 2

• Keep a symptom diary noting severity of dryness, pain, and fatigue on a 0-10 scale
• Monitor for any new systemic symptoms weekly
• Report any red flag symptoms to your rheumatologist immediately
• Maintain regular rheumatology follow-up appointments for disease activity assessment using standardized tools like ESSDAI (EULAR Sjögren's Syndrome Disease Activity Index) 2

When to Contact Your Rheumatologist

• Immediately: Any red flag symptoms (weight loss, fevers, night sweats, lymphadenopathy) 2, 4
• Within days: New neurological symptoms, significant worsening of fatigue limiting function, new skin rashes, or progressive respiratory symptoms 3, 1
• At next scheduled visit: Gradual worsening of sicca symptoms or joint pain that is manageable but concerning 2