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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5 days ago

🇮🇸 Spotlight on Lupus Iceland!

At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network.

💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!
... See MoreSee Less

🇮🇸 Spotlight on Lupus Iceland! 

At our #LupusConvention, Lupus Iceland presented an inspiring poster showing why patient organisations are essential: they identify unmet needs and work towards practical solutions.

Did you know they import sun protection products, like hats & sunscreen, that are not sold in Iceland? How amazing is that? 😍

📰 Through articles in newspapers and radio interviews, they help raise public awareness about lupus and its challenges, giving visibility to the voices of patients in Iceland.

💬 They also hold monthly meetings to answer questions, share updates, and build a strong support network. 

💜 And they’re working to translate #Lupus100 into Icelandic! Making reliable information about lupus accessible to even more people across Europe.

👏 Thank you, Lupus Iceland, for your dedication and hard work. A perfect example of how important patient organisations are, and how much patients can achieve when they work together!
2 weeks ago

🇧🇪 Spotlight on Lupus Belgium!

During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.

🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country.

🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.

Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and we'll be glad to help.

🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.

📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.

🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus.

🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.

📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- don't miss out!

💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.
... See MoreSee Less

🇧🇪 Spotlight on Lupus Belgium!

During our #LupusConvention, several member associations presented their posters, showing the incredible work being done across Europe to support people living with lupus.

🔝 The ASBL Lupus Erythematosus Association presented their inspiring activities, all focused on informing, connecting and empowering people living with lupus across the country. 

🖥️ In May, they proudly launched their new website, www.lupus.be, offering visitors reliable information and an easier way to stay connected with their community.

Did you know that our Capacity Programme supported this initiative? If you are a member of Lupus Europe and have a project that requires assistance, please send us an email and well be glad to help.

🧘‍♀️ Through their Yoga Workshop, they create a safe space, helping members find wellbeing- an initiative they will continue in the coming year.

📖 Their magazine, Le Lien, published two new editions this year, sharing the latest scientific advances, patient stories and perspectives on lupus, continuing to bridge knowledge and experience.

🎓 They also support therapeutic workshops, empowering both patients and caregivers through training designed to improve understanding and self-management of #lupus.

🌸 With a growing community of more than 3,000 followers on Facebook, Association Lupus erythémateux Belgique continues to build a safe space where people can stay informed, supported and connected.

📅 And on October 18th, they’ll host their Annual Day! That will focus on troublesome symptoms and new treatments- dont miss out!

💜 Congratulations to The ASBL Lupus Erythematosus Association for their ongoing commitment and creativity. You are a wonderful example of how local initiatives can make a real difference for those living with lupus.Image attachmentImage attachment+3Image attachment
2 weeks ago

📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

🔗 www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
... See MoreSee Less

📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition. 

 🙏  Thanks for sharing your experience!

🔗 https://www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
3 weeks ago

🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes.

🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do.

🤔 How is this possible? These factors don't cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience.

💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time.

According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example:

🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis.
🔹 Low health literacy and cultural stigma make treatment adherence harder.
🔹 Living in rural areas limits access to specialised care.
🔹 Financial barriers and social isolation worsen both physical and mental health.

These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post.

‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images).

👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus.

Read the full study: www.sciencedirect.com/science/article/pii/S1568997225001478
... See MoreSee Less

🌍 According to the World Health Organisation (WHO), the substantial impact of social determinants of health (SDH) accounts for up to 55% of health outcomes.

🚨 This means factors such as income, education, housing, access to healthcare, and social support can influence our health as much as medical treatments or disease management do.

🤔 How is this possible? These factors dont cause lupus, but they strongly influence how early it’s diagnosed, how it’s managed, and what outcomes people experience.

💸 For instance, low income may not only impair treatment adherence and disease management but also can potentially worsen long-term prognosis. Irregular treatment and delays in receiving care can lead to greater disease complications and a more difficult disease course over time.

According to our latest review, co-led by Dr Daniel Guimarães de Oliveira and Zoe Karakikla-Mitsakou, people living with lupus often face disparities linked to SDH at every step of their journey, from diagnosis to management and outcomes. For example:

🔹 Those with lower income or education, or from minority backgrounds, often face delayed diagnosis.
🔹 Low health literacy and cultural stigma make treatment adherence harder.
🔹 Living in rural areas limits access to specialised care.
🔹 Financial barriers and social isolation worsen both physical and mental health.

These are just a few examples of the many social determinants of health (SDH) that can influence #lupus. You can find the full picture in our study, which you can find at the end of this post.

‼️ All these factors interact, leading to worse outcomes like higher disease activity, reduced quality of life, and more comorbidities, as shown in Table 1 of our paper (see images).

👉 Understanding and addressing these social factors is key to bringing a better life for people with lupus, until we reach a life without lupus.

Read the full study: https://www.sciencedirect.com/science/article/pii/S1568997225001478Image attachmentImage attachment+6Image attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
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