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

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.

‼️ According to Lupus Europe's 2024 Swiss knife survey:

1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
3️⃣ Only a small minority of patients report long-term stability without flares.
4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.

That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

✅ These updated recommendations reinforce several key messages that matter to patients:
- Early and regular monitoring of kidney involvement.
- Timely kidney biopsy when needed.
- Clear treatment targets to preserve kidney function.
- A strong focus on combination therapies when appropriate.
- Long-term kidney protection, not only short-term control.

🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989
... See MoreSee Less

🚨 New publication

😃 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! 👇

Alcohol & Drugs - Lupus
... See MoreSee Less

😃 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!

lupusresearch.limequery.org/337533?lang=en
... See MoreSee Less

🚨 𝗟𝗮𝘀�
LUPUS EUROPE Uniting people with Lupus throughout Europe
Send