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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🦋 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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😃 Last week at #EULAR2026, we presented POS0246-PARE, “Mapping mental health trajectories in lupus: patient-identified inflexion points and support opportunities from a European patient panel”.

The poster was presented by Ricky Chotai, Lupus Europe Board Member, on behalf of Alain Cornet, Lupus Europe Finance Lead & Organisation Coach, and lead author of this work.

✅ This patient-led qualitative work explored how people living with lupus and established, currently stable mental health difficulties understand the trajectory of mental health across the lupus journey.

‼️ Based on our patient panel conducted in Portugal with 8 adults living with lupus, the work identified key moments when support may matter most: diagnostic uncertainty, early disease phases, fluctuating symptoms, and communication with healthcare professionals.

🔴 One of the key messages is clear: mental health in lupus should not be seen only as an isolated symptom or crisis. It can be shaped over time by interactions with uncertainty, communication, and care structures.

The findings point to practical opportunities for support, including earlier acknowledgement of mental health concerns at diagnosis, normalising mental health discussions in lupus care, clearer communication during periods of uncertainty, peer support, and integrated psychosocial support throughout the disease course.

💫 Congratulations to Alain Cornet for this outstanding poster and to all authors: Zoe Karakikla-Mitsakou, Jeanette Andersen, Ricky Chotai, and Alain Cornet.

Read the abstract:
distribution-congress.eular.org/from.storage?image=15rRXWmdOAJ77zPlkD-rQtl85j9jAymUnt6XfjsO2C9rls...
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😃 Last week at #E

💜 Thank you to everyone who attended our EULAR 2026 Recap Webinar and joined us to look back at one of our most exciting congresses in recent years.

🤩 #Eular2026 has been intense, inspiring and full of moments we will remember.

Over the Congress, Lupus Europe contributed to and followed an incredible amount of work:

✅ 7 presentations as speakers
✅ 3 sessions chaired
✅ 66 sessions attended
✅ 318 presentations followed
✅ All the interviews you have been able to see in this webinar

But it is not only about numbers.

🌟It is also about the people behind them: the commitment, the humour, the hugs, the shared tiredness, the late nights, the conversations between sessions, and the spirit of this amazing Lupus Europe family.

What makes our work possible is not only the support we receive from our community, partners and friends.

🥰 It is also the energy, attitude, and generosity of our volunteers, who give their time, expertise and heart to Lupus Europe.
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