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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1 hour ago

😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Don't worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

www.facebook.com/LupusEurope/videos/1257813502412444
... See MoreSee Less

😨 Did you miss our #EULAR2025 debrief webinar?

😮‍💨 Dont worry! You can watch the full session at your convenience.

Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!

https://www.facebook.com/LupusEurope/videos/1257813502412444
3 days ago

‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.

😊 Share your experiences and how you #KickLupus & UV light in your daily life
... See MoreSee Less

‼️ According to our Living with Lupus in 2020 survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus. 

😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.

💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:

🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms. 

The need to stay covered and protected from the sun can make these jobs particularly challenging.

🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus. 

Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection. 

This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment. 

For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities. 

🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun. 

😊 Share your experiences and how you #KickLupus & UV light in your daily lifeImage attachment
6 days ago

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
... See MoreSee Less

🟣 Phase 2 of LUPUS-ALERT is now complete!

Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.

🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:

🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care

🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.

💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!

📌 Stay tuned — more to come soon!
1 week ago

🌟Thank you to all who attended our #EULAR2025 debrief webinar!

🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.

Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
... See MoreSee Less

LUPUS EUROPE Uniting people with Lupus throughout Europe
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