Sandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V. She is also one of the German-version translation volunteers of Lupus100. Below is a piece Sandra wrote on smoking and lupus. According to a study presented at the EULAR Congress 2023, smokers have a doubled risk of developing lupus. The study also emphasised smoking’s negative impact on medication effectiveness and increased risk of heart attacks due to accelerated atherosclerosis in lupus patients. 

 

Smokers have twice the risk of lupus

According to a study from Greece, smoking more than doubles the likelihood of at-risk individuals developing lupus. This makes smoking one of the most important risk factors for developing lupus. As per the study’s findings, the second important risk factor is first-degree kinship with a person with lupus. George Bertsias, Professor of Rheumatology at the University of Crete, presented the study at EULAR Congress 2023 (where EULAR stands for European Alliance of Associations for Rheumatology) in the early summer of 2023.

French lupologist Professor Laurent Arnaud described the study as very interesting because it was one of the first studies that looked at how to predict lupus development. Only people who already have autoantibodies in their blood or who are directly related to a person suffering from lupus could participate in the study. All of the approximately 60 participants therefore already had certain risk factors for lupus. Participants were followed for up to five years as part of the study. The aim was to find out whether certain factors could be used to predict which people were at greater risk of developing lupus. For this purpose, the participants were asked to provide various information, such as infections, lifestyle information and medication. Blood and urine analyses were also carried out.

Twenty two percent (22%) of the participants developed lupus during those five years of observation. The large amount of information collected about them revealed that there were two main factors that doubled the risk of developing lupus: smoking and being directly related to someone with lupus. “Unfortunately, we can’t do anything about this second point, but we can very well influence smoking,” Prof. Laurent Arnaud said in the Lupus Europe “EULAR 2023 Webinar Debrief – For People Living with Lupus”: “If you are at risk of lupus, you absolutely should not smoke.”

 

Smoking may affect the effectiveness of medicines in lupus

Jeanette Andersen, chair of Lupus Europe, who was in the “EULAR 2023 Webinar Debrief – For People Living with Lupus” with Professor Arnaud, added that until now it was common knowledge that if you have lupus, you should not smoke because it interferes with the effectiveness of your medication and can makes the course of the disease worse. “But now we also have data for before diagnosis and we now know that smoking is bad, whether you already have the disease or not,” Jeanette Andersen concluded.

In the webinar, Professor Arnaud mentioned a study from 2015 in which he was involved; the study found the effectiveness of hydroxychloroquine in skin involvement may be halved due to smoking. “So minus 50 per cent in smokers compared to non-smokers, that’s a big difference,” Professor Arnaud said.

 

Smoking increases risk of heart attacks

A third reason not to smoke is that it increases the risk of accelerated atherosclerosis. According to the Lupus100 website “There is an increased cardiovascular risk related to lupus itself (increased risk of cholesterol deposits in the arteries), which further increases the risk of tobacco-related heart attacks.” Atherosclerosis is one of the most important long-term complications of lupus, along with infections.

 

 

Sources:

For more insights you can watch the Lupus Europe “EULAR 2023 Webinar Debrief – For People Living with Lupus” : https://www.youtube.com/watch?v=2vBISe63b7o

Additionally the Lupus Hub shared slides from Professor Bertsias Study via this tweet: https://twitter.com/lupus_hub/status/1664645654356930566

Further information can be found on the Lupus100 Website’s page “Should I Quit Smoking?” : https://lupus100.org/en/questions/should-i-quit-smoking

 

Text by Sandra Schaftner

 

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🎥 Missed our #EULAR2026 recap webinar?

The recording is now available on YouTube.

In this session, Lupus Europe volunteers bring back some key lupus-related learnings from EULAR 2026 from fatigue, pain & lived experience, to LupusGPT, access, youth co-creation and new research directions.

A huge thank you again to everyone who helped make this webinar possible.

Watch here:
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🎥 Missed our #EUL

☀️ UV light and lupus: it is 𝗻𝗼𝘁 ❞𝗷𝘂𝘀𝘁 𝘀𝘂𝗻𝘀𝗵𝗶𝗻𝗲❞.

🔴 For many people living with lupus, sun and UV exposure can affect much more than Summer plans.

In the Lupus Europe Living with SLE in 2020 survey, photosensitivity was 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.

😔 Furthermore, in Lupus Europe’s Swiss Knife Survey 2024, 25.8% of respondents said 𝘀𝘂𝗻 𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗲𝗱 𝘁𝗵𝗲𝗺 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁.

💥 The potential effect of the UV rays in lupus can influence when people go out, what they wear, how they plan holidays, whether they join outdoor activities, and how much they need to explain their choices to others.

𝗧𝗵𝗮𝘁 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.

❌ Sun sensitivity may sometimes be seen as a “minor” symptom, but 𝗶𝘁𝘀 𝗶𝗺𝗽𝗮𝗰𝘁 𝗰𝗮𝗻 𝗯𝗲 𝘀𝗶𝗴𝗻𝗶𝗳𝗶𝗰𝗮𝗻𝘁. It can affect work, education, personal relationships, social life and mental wellbeing. It can also affect the people around someone living with lupus, from family and friends to colleagues who may not always understand why plans need to change.

Have questions about lupus and UV light?
Explore reliable information through #Lupus100 or ask #LupusGPT or #EasyLupus.

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🦋 Our final #EULAR2026 recap is here!

🌍 We started the day in the session “Next-Gen Treatments: CAR-based Therapies and Beyond in RMDs”, chaired by our Chair, Jeanette Andersen.

The session explored new therapeutic frontiers, but also the responsibilities that come with them. For us, one message remains essential: innovation must be developed with patients, not only for patients.

💬 Jeanette also delivered the PARE Meet the EULAR Expert session “AI as a Partner in Care: Empowering the RMD Community with Information”.

The room was packed, showing the strong interest around #LupusGPT and #EasyLupus as powerful patient-led, validated digital tools that help people living with lupus access reliable, understandable information in almost any language.

The many questions from attendees showed how relevant this topic has become for healthcare professionals, researchers, patient representatives and the wider rheumatology community.

🧬 We also followed the “How to treat SLE” session with George Bertsias, who focused on current and evolving approaches in lupus care, including treat-to-target strategies, remission or low disease activity, and the importance of reducing long-term organ damage.

🦴 Later, Edward Vital led the Meet the EULAR Expert session on “Management of joint involvement in systemic lupus”, a topic that matters deeply to many people living with lupus.

💜 A special highlight of the day was seeing Lupus Europe’s work recognised during the EULAR highlights another year.

These sessions take place at the very end of the Congress and bring together the key takeaways from #EULAR2026. Importantly, there are no parallel sessions at that time, which means there is no competition with other talks, and most of the attendees are in the room.

🙏 Thank you to everyone who followed, shared, visited us, spoke with us and supported us throughout #EULAR2026.
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🦋 We continue bringing you our #EULAR2026 congress recaps!

The third day was another intense day for Lupus Europe, with patient-led research, emerging science and important conversations about lived experience, as well as ongoing and potential projects to improve lupus care.

🧠 One of the highlights was Alain Cornet’s poster on mental health trajectories in lupus: “Mapping mental health trajectories in lupus: patient-identified inflection points and support opportunities from a European patient panel”.

Presented by Ricky Chotai on Alain’s behalf, this patient-led work explored how people living with lupus and mental health difficulties understand mental health across the lupus journey.

Yesterday, we already told you more about this poster and its key messages, in case you missed it!

🦠 On 5 June, we followed emerging science on the microbiome, and the Meet the EULAR Expert session “Management of joint involvement in systemic lupus” with Professor Edward M. Vital.

📊 Disease activity measurement in SLE was another important theme, especially how clinical targets can be better aligned with lived experience.

♀️ Menopause was part of the day’s conversations, highlighting the importance of asking about it routinely and recognising how hormonal transitions may shape symptoms and quality of life.

🌍 Across the day, one message kept returning: better lupus care needs science, but also communication, patient priorities and tools that help people say what matters most.

That is exactly why tools such as the Lupus Consultation Cards matter. They are available in 20 languages and help people prepare for their lupus appointments by organising symptoms, concerns and top questions in advance. Check them out here: www.lupus-europe.org/lupus-consultation-cards/

💬 We kept connecting these discussions with #LupusGPT and #EasyLupus, because access to understandable, reliable information before and after consultations is part of helping people take a more active role in their care.

🥳 And we celebrated Jeanette's birthday!

😃 Want to know more? Catch up on the latest insights from the congress in our #EULAR2026 Recap Webinar, which you can watch here: www.facebook.com/LupusEurope/videos/2035644043691260
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