Lupus FAQ

LupusGPT is a free information tool created to help people living with lupus access reliable, patient-friendly general information about lupus.

It has been built using a curated library of valid documents on lupus, reviewed by patients and specialist lupus doctors, so users can ask questions in natural language and receive answers grounded in those documents.

LupusGPT is designed to make general lupus information easier to access. It is not a substitute for medical care or advice from your own healthcare team.

LupusGPT is for:

• people living with lupus
• family members and carers
• people who want to understand lupus better
• anyone looking for reliable general information about lupus

LupusGPT works best for general questions about lupus, for example:

• What is lupus?
• What are common lupus symptoms?
• Can lupus affect the kidneys?
• Why is sun protection important in lupus?
• What are corticosteroids used for in lupus?

As with any digital tool, please do not use LupusGPT for:

• personal medical advice
• diagnosis
• emergencies
• urgent decisions about treatment
• questions that require knowledge of your own medical history, test results, medicines, or current condition.

For example, LupusGPT is not the right place to ask:

• “Do I have lupus?”
• “Is this rash my lupus?”
• “What should I do about my blood results?”
• “What treatment is right for me personally?”

Those types of questions are for your doctor or clinical team.

LupusGPT works best when questions are asked in a general way.

For example, a good way to ask might be: “What are common signs of a lupus flare?”

A question phrased like this is unlikely to receive an answer: “Am I having a lupus flare right now?”

A good rule is this: Ask about lupus generally, not about yourself personally.

If LupusGPT does not answer your question, it may be because the answer is not contained in its library of lupus documents, or because the question is too personal or too specific.

A good next step is to try rephrasing your question in a more general way.

For example, instead of “Why am I so tired all the time?”, try asking: “Is fatigue common in lupus?”

If LupusGPT still cannot answer, it may be that the information is not in its current document library.

Questions that do not receive an answer may be reviewed in anonymised form to help us identify gaps, improve the tool, and strengthen the document library over time, as explained in the privacy information.

The document library is reviewed regularly. So if LupusGPT cannot answer your question today, it may be able to answer it in the future.

As with most digital tools, when using LupusGPT please do not enter personally identifiable information.

Digital tools can be useful for information, education, and understanding. They do not replace clinical judgement or personal medical care.

No. LupusGPT cannot diagnose lupus or any other condition. Diagnosis requires proper medical assessment by a qualified healthcare professional.

No. LupusGPT can explain general information about treatments used in lupus, but it cannot tell you what treatment is right for you personally.

Treatment decisions depend on your symptoms, manifestations, medical history, current medications, and many other individual factors. Treatment decisions are not for digital tools, but are made with your healthcare team.

No. If you are acutely unwell or worried about urgent symptoms, please seek urgent medical help in the usual way.

LupusGPT is built on a curated library of valid lupus documents selected and reviewed by patients and specialist lupus doctors.

LupusGPT does not search the whole internet to answer questions on lupus. Its answers are intended to stay within the library of documents that have been chosen for the tool.

No. Like any tool, LupusGPT has limits.

If the answer is not contained in the library of documents LupusGPT is built on, it will not be able to answer. Some questions may also be too specific, or outside the scope of the tool.

EasyLupus is a feature of LupusGPT. EasyLupus has been built on the same curated library of valid lupus documents, but it is designed for different user needs. EasyLupus was created for users who benefit from shorter answers, simpler wording, and a more accessible format. EasyLupus is also multilingual.

Please let us know!

If you notice:

• something unclear
• something inaccurate
• a topic that is missing
• an answer you think could be improved
• or any other issue

we would very much like to hear from you!

Feedback helps us strengthen the tool and make it more useful for the lupus community. E-mail us at: lupusgpt@lupus-europe.org

LupusGPT is a collaborative, patient-led initiative, developed by LUPUS EUROPE, specialist lupus doctors, and technical AI experts.

Its aim is to help people living with lupus access free, reliable information on lupus across multiple languages.