What a frustrating situation — being caught between two different opinions when you're the one living with the symptoms. That's genuinely hard, and your concerns are completely valid.
To answer your question about the AVISE test: yes, it is possible to have a negative result and still have lupus. A negative result doesn't Show Full Answer
What a frustrating situation — being caught between two different opinions when you're the one living with the symptoms. That's genuinely hard, and your concerns are completely valid.
To answer your question about the AVISE test: yes, it is possible to have a negative result and still have lupus. A negative result doesn't automatically rule it out. Some people with a negative AVISE test result may still have lupus, while a positive result makes a correct diagnosis more likely within two years. Lupus diagnosis is complex and isn't based on a single test alone. Doctors typically consider a combination of lab results, physical symptoms, and medical history together — which is exactly how your original diagnosis was made.
Your ongoing symptoms — joint pain, hair loss, and fatigue — are all recognized lupus symptoms, and that matters. Regarding hydroxychloroquine, stopping it suddenly is not recommended. Research shows that people who stop taking it are more likely to experience flares, even after being stable for a long time. This is true even if recent labs look better.
Please do not stop taking hydroxychloroquine without speaking directly to your prescribing doctor first. Here's what might help navigate the disagreement between your providers:
- Ask your doctor directly why they continue to prescribe hydroxychloroquine despite the recent lab results
- Request a referral to a rheumatologist if you aren't already seeing one — they specialize in exactly this kind of complex situation
- Bring both providers' opinions to one conversation if possible, so there's a unified care plan
- Document your symptoms between visits — this gives your doctor a clearer picture beyond what labs show
Your lived experience with symptoms is important clinical information, not just background noise.
June 27
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