Monday, September 25th Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the European Parliament ENVI Committee on “The case of lupus: Prevention and Treatment of Autoimmune Diseases” at the workshop in Parliament on “Autoimmune Diseases – modern diseases”.

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Message is that lupus is complex and complicated both to manage and to live with. Only one new compound in 50+ years has passed Phase III of clinical trials. Cause of disease is still unknown yet a special cocktail of genes and environmental factors can trigger onset of lupus and further direct the course of disease.

Current treatment and practice might keep us out of the hospital bed, but not out the sick bed. Our LEO study1 showed that only about half of us living with lupus maintain connection to the workforce, and the majority of those do so on reduced terms: while diagnosed at the age of 37 (25-45 yrs) and time to diagnosis is 7 years (average); This serious change of life happens at the time of establishing family and career!

There is no vaccine or golden rule of behavior that will prevent disease onset or further development. We have learned though the past few years that treatment plan is a shared decision between you and your treating specialist, so follow this plan. Also considering the typical comorbidities of autoimmune disease are complications from photosensitivity, smoking, level of exercise and dietary adjustment to observe CVDs could improve the general health status.

Current treatment recommendations are anti-malarials (hydroxychloroquine) to provide the long-term lowering general disease symptoms. When this is not enough, further immunosuppresives can be added, like from milder methotrexate to azathioprin, cyclosporine to mycophenolate mofetil. As a fast actor is generally used prednisolone. Only hydroxychloroquine and prednisolone have been approved for managing lupus respectively 1955 and 59.

There is a list of different biologics used in cases where other treatment is not enough or not having the wanted control of disease activity: rituximab, infliximab, etanercept, adalimumab and belimumab – most of which are used/approved for treatment of rheumatic arthritis. It is very difficult to tell when this or that compound has any effect on the individual, which complicates the efficacy assessment. No one set of biomarkers nor treatment  is yet found.

The failing trials of one compound after another is devastating to witness – each time one less option for perhaps better outcomes and improved quality of life.

Lupus is often viewed as the archetype of autoimmune diseases – if the understanding of why and how this disease operates, then perhaps the autoimmune enigma can be solved!

People living with lupus share some further conditions with other rheumatic and/or autoimmune diseases, like serious fatigue, comorbidities, damage accrual not only from autoimmune response but also from treatment and more. Our special lupus aspect is complexity, the early age, the very burden and the mental impact. We need to do better!

Us living with lupus need to get actively involved in the research by not only delivering body fluids and tissue, but also through involvement in the planning and execution of research.

New approaches to find better research tools for classification of symptoms and disease manifestations clinically (ACR/EULAR) and genetically (IMI PRECISEADS), revision of the EULAR Recommendations of Management of SLE and revision of PROs used to capture disease activity – are in the process and with our representation.

Patient representatives have been actively engaged in building of consortia to launch new initiatives to build a better foundation for the lupus advancement in disease understanding, defining trial end-points and improve the patient reported outcome measures. We are part of the newly established ERN ReCONNET. At the moment we have one lupus representative working for EMA, but we also need to be better represented in other regulatory and political settings locally, regionally and nationally as well as internationally.

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12 hours ago
LUPUS EUROPE

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Thank you Martijn, for your question! We will ensure your question is raised 🙂

Thank you for following this joint Lupus Europe / ERN ReCONNET webinar! If you have any questions for the speakers, please post them here and we will ensure they are raised! 😃

Hi from Corfu thank you for this it was really helpful!!!

I am curious about diet and microbiome as well. I think the topic is very much understudied and not good understood - but has great influence.

There are huge differences!

Are there possibility’s with food to have remission

There were only young people for the treatment with Car-T cells In am nog young any more. Is ther hope for me?

Only on my phone de zoom started. I do not know why

Metty Staal volgt

What is there to expect the coming years. I mean mean in treatments?

Thank you very much professor Arnoud

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14 hours ago
LUPUS EUROPE

Our joint webinar with ERN RECONNET is also going on Facebook Live!

If you have not been able to register, go to our Facebook Page and enjoy "#EULAR2023 Debrief–for people living with #lupus".

1 hour to go! 😃

www.facebook.com/LupusEurope
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Our joint webinar with ERN RECONNET  is also going on Facebook Live! 

If you have not been able to register, go to our Facebook Page and enjoy #EULAR2023 Debrief–for people living with #lupus.

1 hour to go! 😃

https://www.facebook.com/LupusEurope
22 hours ago
LUPUS EUROPE

🚨Don't miss our webinar today🚨

Along with ERN RECONNET, we have organised this "#EULAR2023 Debrief–for people living with #lupus" webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).

Register by sending an email to secretariat@lupus-europe.org now!

This is the link to the webinar: us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.
... See MoreSee Less

🚨Dont miss our webinar today🚨

Along with ERN RECONNET, we have organised this #EULAR2023 Debrief–for people living with #lupus webinar with speakers Prof. Laurent Arnaud and our Chair, Jeanette Andersen.

Today at 19.30 CEST (i.e. Paris time).
  
Register by sending an email to secretariat@lupus-europe.org now! 

This is the link to the webinar: https://us02web.zoom.us/postattendee?mn=M427EvtnmvHdk0JAHWvzvFfSLI8DNl0Dwz8Q.UQk33isEc4kWzlqy

𝗛𝗼𝘄𝗲𝘃𝗲𝗿, 𝘆𝗼𝘂 𝘄𝗶𝗹𝗹 𝗻𝗼𝘁 𝗯𝗲 𝗮𝗱𝗺𝗶𝘁𝘁𝗲𝗱 𝘁𝗼 𝘁𝗵𝗲 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝘂𝗻𝗹𝗲𝘀𝘀 𝗿𝗲𝗴𝗶𝘀𝘁𝗲𝗿𝗲𝗱.

Registration is compulsory.

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Not succeeding to send an email for registration. I would like to participate. Thanks

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2 days ago
LUPUS EUROPE

One of our PAN members explains to the Italian lupus community what is #Lupus100 and what it can offer: high-quality and reliable information about #lupus in a patient-friendly language!

At the moment, available in 🇬🇧 🇩🇰 🇩🇪 🇪🇸 🇬🇷 🇫🇷 🇮🇹 🇳🇱 🇷🇴 🇫🇮 🇺🇦.

More languages to come soon! Stay tuned, and don't miss it!

lupus100.org/
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Grazie

💜💜💜

LUPUS EUROPE Uniting people with Lupus throughout Europe
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