As relayed in the media, Hydroxychloroquine (Plaquenil, Quensyl,…) is being investigated as a potential treatment for COVID-19 related pneumonia. We all hope that it will help improve the outcomes of those affected by the disease. Unfortunately, in some countries, this has resulted in stock-piling, and the unplanned increase in demand has created shortages, causing anxiety amongst lupus patients that rely on Hydroxychloroquine as base treatment.

Lupus Europe and several national members have raised the issues with National Health Authorities and manufacturers. They are now well aware of the problem and are actively working on solutions. Production is beefed up, manufacturers are working with National Regulatory agencies and Pharmacy associations to help the distribution process and avoid shortages. In some countries, a special process has already been implemented in case a pharmacy can’t find Hydroxychloroquine with their wholesaler for on-label (lupus, …) use. Others will follow.

As a lupus patient, here is what you can do if you face this situation:

1. Do not stock up on Hydroxychloroquine.
2. If you anticipate the need for Hydroxychloroquine soon, talk to your pharmacy to pre-order, and clearly mention that this is as treatment for your lupus. Do not ask for more than you need (i.e. 1 box).
3. Ask your doctor to mention on the prescription that this is for your lupus. In some countries, this will help prioritize supply.
4. If you do not have Hydroxychloroquine anymore, and can’t obtain it at pharmacy:
• Ask your pharmacy to get in contact with the local provider office (“Marketing authorization holder”) on a possible emergency procedure for on-label usage
• Get in contact with your rheumatologist and ask for guidance. In some countries, your doctor might also be able, if necessary, to meet your needs via hospital controlled supply.
• Don’t Panic! While Hydroxychloroquine is an essential part of your treatment, if you have regularly taken it over the past weeks, it will keep its protective effect for an extended period, even if you cannot take it during a limited period. Strictly follow your Rheumatologist’s guidance, both in the period where you might not have access to Hydroxychloroquine, and when you receive your next box.
5. Do NOT self-adjust any of your medication : Do not stop Cortisone, nor immune-suppressant, nor Plaquenil treatments, unless you get instructed to do so by your doctor.

Take care of yourself, and of the others – we will all get through this together!

More information through:

As relayed in the media, Hydroxychloroquine (Plaquenil, Quensyl,…) is being investigated as a potential treatment for COVID-19 related pneumonia. We all hope that it will help improve the outcomes of those affected by the disease. Unfortunately, in some countries, this has resulted in stock-piling, and the unplanned increase in demand has created shortages, causing anxiety amongst lupus patients that rely on Hydroxychloroquine as base treatment.

Lupus Europe and several national members have raised the issues with National Health Authorities and manufacturers. They are now well aware of the problem and are actively working on solutions. Production is beefed up, manufacturers are working with National Regulatory agencies and Pharmacy associations to help the distribution process and avoid shortages. In some countries, a special process has already been implemented in case a pharmacy can’t find Hydroxychloroquine with their wholesaler for on-label (lupus, …) use. Others will follow.

As a lupus patient, here is what you can do if you face this situation:

1. Do not stock up on Hydroxychloroquine.
2. If you anticipate the need for Hydroxychloroquine soon, talk to your pharmacy to pre-order, and clearly mention that this is as treatment for your lupus. Do not ask for more than you need (i.e. 1 box).
3. Ask your doctor to mention on the prescription that this is for your lupus. In some countries, this will help prioritize supply.
4. If you do not have Hydroxychloroquine anymore, and can’t obtain it at pharmacy:
• Ask your pharmacy to get in contact with the local provider office (“Marketing authorization holder”) on a possible emergency procedure for on-label usage
• Get in contact with your rheumatologist and ask for guidance. In some countries, your doctor might also be able, if necessary, to meet your needs via hospital controlled supply.
• Don’t Panic! While Hydroxychloroquine is an essential part of your treatment, if you have regularly taken it over the past weeks, it will keep its protective effect for an extended period, even if you cannot take it during a limited period. Strictly follow your Rheumatologist’s guidance, both in the period where you might not have access to Hydroxychloroquine, and when you receive your next box.
5. Do NOT self-adjust any of your medication : Do not stop Cortisone, nor immune-suppressant, nor Plaquenil treatments, unless you get instructed to do so by your doctor.

Take care of yourself, and of the others – we will all get through this together!

More information through:
Lupus UK
https://www.lupusuk.org.uk/coronavirus/
Lupus Research Alliance
https://www.lupusresearch.org/hydroxychloroquine-common-lu…/
Lupus Foundation of America
https://www.lupus.org/resources/coronavirus-and-lupus

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😃 Thank you to all who attended our latest Youth Group webinar!

🌟 So many interesting questions were asked and addressed! Showing how important safe spaces arefor talking openly about lupus without judgment.

Did you miss it? Watch it here! 👇

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😃 Thank you to al

🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗

🙏 Help Prof Laurent Arnaud and his team validate the Lupus Brain Fog Severity Scale.

✅ Make lupus brain fog measurable.

⏱️ 5 minutes of your time can make a huge impact!

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Don't miss this unique opportunity! Register now by emailing secretariat@lupus-europe.org

📌 Youth Group Webinar: Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health.

Lupus Europe’s Youth Group invites you to an open, evidence-based discussion with Dr Luca Moroni focused on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

We will talk clearly about:

🚨 Known risks and current uncertainties
🚨 Interactions with lupus treatments
🚨 Real-life situations often left out of the conversation

😱 Why talk about this?

Because young people sometimes make choices that can carry real health risks, and they don’t always feel able to tell their loved ones or doctors everything.

‼️ Alcohol and recreational substances are part of many social environments. When lupus is involved, lack of reliable information can increase risks.

💁‍♀️ Talking about this before helps:

•⁠ ⁠Reduce avoidable risks.
•⁠ ⁠Encourage safe and informed decisions.
•⁠ ⁠Create a safe space for questions that are often left unasked.

🌈 That’s why this webinar exists: to anticipate real situations, NOT encourage them, and provide clear, evidence-based information for young people living with lupus.

🗓 29 January 2026
⏰ 19:00 CET
💻 Online

⏳ There’s still time to join!
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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