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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🦋 EULAR started yesterday!

This year, #EULAR2026 brings together a huge rheumatology community:

📊 5,705 abstracts submitted from 102 countries, a new EULAR record
📊 187 scientific sessions across 15 tracks
📊 More than 350 distinguished speakers from 43 nations

And Lupus Europe is here!

As promised, some of our PAN members are covering lupus-related sessions to bring key messages back to the lupus community.

🧑‍🤝‍🧑 One of yesterday’s highlights was seeing Marina Pietri present our poster on Sex & Lupus co-creation, with Rita Vieira also there representing the Youth Group’s work. The poster shows how young people with lupus worked with a clinician to create a safe, respectful space to talk about sex, intimacy and lupus, topics that are still too often left out of routine care.

A big thank you to Dr Cristiana Sieiro Santos for her support and collaboration in making this work possible.

🎥 If you haven’t watched the webinar yet, visit our YouTube channel and watch it there.

🧠 We also followed a session on fatigue, one of the symptoms people with lupus most often report as difficult to explain, measure and manage. The session looked at when tiredness becomes pathological, how fatigue can be assessed, and why lifestyle advice needs to be realistic and adapted to each person.

💬 Patient-doctor communication was another key topic yesterday. Have you heard about the Lupus Consultation Cards? Inspired by the work of NVLE in collaboration with ERN ReCONNET, they are a simple tool to help people prepare for appointments, organise symptoms and questions, and focus the conversation on what matters most. This is the idea behind our #MakeItCount campaign.

🌍 Dr Daniel Guimarães de Oliveira presented a poster on social determinants of health in lupus care, co-authored with our General Secretary Zoe Karakikla Mitsakou. This work shows how healthcare professionals, Patient Research Partners from Lupus Europe, local patient volunteers and social workers co-designed a practical framework to identify barriers such as financial pressure, health literacy, transport, social support and access to care, and connect them with local solutions.

📱 Digital tools were also part of yesterday’s programme, with discussions on how technology can support self-management, shared decision-making and patient empowerment. For Lupus Europe, this strongly connects with our work on reliable, patient-centred digital information, including #LupusGPT and #EasyLupus.

🔬 We also followed the session “The mitochondria: a new culprit for autoimmune diseases?”. The discussion explored how mitochondrial DNA and RNA may act as danger signals, activating immune pathways such as interferon responses and contributing to inflammation in lupus and other autoimmune diseases.

👏 Kudos to our PAN members and Board members for their great job on this first day of EULAR!

🦋 Stay tuned. Today will be another big day for Lupus Europe at #EULAR2026!

Our Chair, Jeanette Andersen, will speak in the session on non-pharmacological interventions to improve quality of life.

We also have a Meet the EULAR Expert session on “AI as a Partner in Care: Empowering the RMD Community with Information”, focusing on AI tools such as #LupusGPT and #EasyLupus, which will be delivered by Zoe Karakikla Mitsakou.
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☀️ Good morning from beautiful London!

#Eular2026 is here, and so are we‼️

💬 You may already know #lupusgpt. You may have read the paper in The Lancet Rheumatology. You may have tried the tool, shared it with a patient, or recommended it to a colleague.

📊 But there is more. More to do. More lessons learned from two years of building something genuinely patient-led. More to understand about what happens when patients, clinicians, and AI specialists work together from the very first question.

🦋 This week, we will be sharing it all.

#lupusgpt: more than you think. Further than you imagined.
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☀️ Good morning

📅 Tomorrow, the EULAR Congress begins!

🌍 #Eular2026 starts tomorrow, and Lupus Europe will be there!

🦋 We will be representing the patient voice, following the latest research, and sharing key updates with our community throughout the week.

Stay tuned for live updates, session highlights, and much more.

💬 Will you be following the congress? Let us know in the comments!
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📅 Tomorrow, the E

🔴 𝐑𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 𝐝𝐨𝐞𝐬𝐧❜𝐭 𝐚𝐥𝐰𝐚𝐲𝐬 𝐟𝐞𝐞𝐥 𝐥𝐢𝐤𝐞 𝐫𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 🔴

This is one of the most important insights from a new editorial just published in Rheumatology.

📋 The editorial responds to a study analysing five years of data from the Amsterdam SLE cohort. The findings are striking:

🔹 In over half of clinical visits, patients rated their disease as more active than their physicians did.
🔹 Even among visits meeting formal remission criteria, more than 1 in 3 patients still reported significant disease burden.

These discrepancies highlight an important gap between how disease activity is measured clinically and how lupus is experienced by patients in daily life

📊 According to LUPUS EUROPE’s Swiss Knife Survey, patients’ definitions of “disease control” often go far beyond normal blood tests. They include 𝗳𝗿𝗲𝗲𝗱𝗼𝗺 𝗳𝗿𝗼𝗺 𝗳𝗹𝗮𝗿𝗲𝘀, 𝘀𝘁𝗮𝗯𝗹𝗲 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁, 𝗾𝘂𝗮𝗹𝗶𝘁𝘆 𝗼𝗳 𝗹𝗶𝗳𝗲, and the ability 𝗹𝗶𝘃𝗲 𝗮𝘀 𝗻𝗼𝗿𝗺𝗮𝗹𝗹𝘆 𝗮𝘀 𝗽𝗼𝘀𝘀𝗶𝗯𝗹𝗲.

𝗦𝗵𝗮𝗿𝗲 𝘄𝗶𝘁𝗵 𝘂𝘀 𝘄𝗵𝗮𝘁 𝗿𝗲𝗺𝗶𝘀𝘀𝗶𝗼𝗻 𝗺𝗲𝗮𝗻𝘀 𝗳𝗼𝗿 𝘆𝗼𝘂. Let's make it visible.

The editorial, co-authored by Dr Alvaro Gomez from Karolinska Institutet, and Zoe Karakikla-Mitsakou, LUPUS EUROPE General Secretary, points to several possible ways this might be addressed:

✅ Incorporating patient-reported outcomes into treatment target definitions
✅ Using assessment tools that better integrate patient-reported symptoms
✅ Exploring broader target frameworks that better reflect what meaningful disease control may look like for people living with lupus

This reinforces why people with lupus must be involved from the start in shaping how treatment success is defined, measured, and pursued.

💬 Have you ever been told you are in remission but not felt like it?

Share what remission means for you in the comments. Let’s make it visible.

📖 Read the full editorial: doi.org/10.1093/rheumatology/keag259
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