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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13 hours ago

🦋 It's #LupusAwarenessMonth❗

🦵 #KickLupus: make it visible

Take part in the Living With Lupus in 2024 survey.

🗣️Your insights are crucial for capturing the diverse experiences of those living with #lupus across Europe.

𝗞𝗲𝘆 𝗽𝗼𝗶𝗻𝘁𝘀 𝗼𝗳 𝘁𝗵𝗲 𝘀𝘂𝗿𝘃𝗲𝘆:

1️⃣ Confidential and brief: Your identity stays anonymous and takes only 15 minutes.
2️⃣ Personalized and relevant: The survey adapts to your unique situation and covers aspects pertinent to your life with lupus.

👨‍💻 We're gathering data to:

🔹 Understand the current landscape of lupus treatment and management in Europe.
🔹 Identify key areas for support and improvement.
🔹 Ensure that the voices of those living with lupus are heard.
🔹 Recognise the diverse needs and challenges faced by the lupus community.

🦋 This survey will dive into your unique experience on 🩺 diagnosis & symptoms, 💊 treatment & 👨‍👩‍👧‍👦 how lupus affects your daily activities and the strategies you employ to manage it.

🔄 Please 𝘀𝗵𝗮𝗿𝗲 𝘁𝗵𝗶𝘀 𝘀𝘂𝗿𝘃𝗲𝘆 with your community and on your social media.

Languages available:

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Association Lupus erythémateux Belgique Luupuse Selts / Lupus Estonia Организация на пациентите с ревматологични заболявания Σύνδεσμος Ρευματοπαθών Κύπρου ΣύΡεΚ Lupus Suomi ry Association Francaise du lupus et autres maladies auto-immunes AFL + LUPUS FRANCE Lupus Erythematodes SHG e.V. Ελληνική Εταιρεία Αντιρευματικού Αγώνα ΕΛ Ε ΑΝ Α Lupus Poland Lupus Klub Motýlik Reumatikerförbundet Lupus UK Felupus Associação de Doentes com Lúpus
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2 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍️ Responda à pesquisa e compartilhe com sua comunidade.

🙏 Help us & Associação de Doentes com Lúpus achieve more answers to ensure that the Portuguese population is represented in the results

s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi

#LupusAwarenessMonth
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3 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Compila il sondaggio.

🔊Condividi con il tuo network.

s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0

🙏 Help us and Gruppo LES Italiano ODV achieve more answers to ensure that the Italian population is represented in the results
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1 CommentComment on Facebook

I want to introduce to you Dr. Ravi Herbal Home. Don’t die in silent 🔇 there’s still hope I understand you may have tried different medications but to no avail. Dr Ravi is here to help you cure any kind of diseases such as HIV, LUPUS, CANCER, PILE, ASTHMA , HEPATITIS, VIRGINAL INFECTION , ALZHEIMER-VIRUS, STROKE, HEART DISEASES, AORTIC, DISEASE AND KIDNEY DISEASES ETC . With the use of herbs Kindly contact him on WhatsApp +234(0)9025094850, or email: drravi5314@gmail.com or follow his Facebook page through the link. www.facebook.com/profile.php?id=61558012011988&mibextid=LQQJ4d

4 days ago

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist”

🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗲𝘅𝗰𝗹𝘂𝘀𝗶𝘃𝗲𝗹𝘆 𝗯𝘆 𝗼𝘂𝗿 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 CET.

🙌 A space dedicated to discussing issues that impact youth, by the youth and for the youth.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from a youthful perspective.

👩‍⚕️ Joining us will be the talented young rheumatologist from Italy, Francesca Crisafulli, who will answer your questions and engage in meaningful conversation.

Don't miss the chance to interact directly with a specialist in rheumatology!

🦋 At Lupus Europe, we deeply understand the importance of paying attention to the needs and voices of the young. This webinar reflects our commitment to supporting and including youth in the dialogue on living with lupus.

‼️ Register now by sending an e-mail to secretariat@lupus-europe.org ‼️
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📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist”

 🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗲𝘅𝗰𝗹𝘂𝘀𝗶𝘃𝗲𝗹𝘆 𝗯𝘆 𝗼𝘂𝗿 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 CET.

🙌  A space dedicated to discussing issues that impact youth, by the youth and for the youth.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from a youthful perspective.

👩‍⚕️ Joining us will be the talented young rheumatologist from Italy, Francesca Crisafulli, who will answer your questions and engage in meaningful conversation.

Dont miss the chance to interact directly with a specialist in rheumatology!

🦋 At Lupus Europe, we deeply understand the importance of paying attention to the needs and voices of the young. This webinar reflects our commitment to supporting and including youth in the dialogue on living with lupus.

‼️ Register now by sending an e-mail to secretariat@lupus-europe.org ‼️

1 CommentComment on Facebook

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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