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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21 hours ago

🌟This December, we're embarking on a mission that holds the key to effective #lupus management.

🤔 Can you crack the code and guess the theme that ties us together this month?

Stay tuned as we unveil the secret to a healthier, empowered lupus journey.

🚀 Let the guessing game begin!

#kicklupus
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🌟This December, were embarking on a mission that holds the key to effective #lupus management.

🤔 Can you crack the code and guess the theme that ties us together this month?

Stay tuned as we unveil the secret to a healthier, empowered lupus journey.

🚀 Let the guessing game begin!

#KickLupus

1 CommentComment on Facebook

How to try "tame the Wolf" or at least not let "Wolfie" run amock perhaps?

2 days ago

🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
... See MoreSee Less

🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilitiesImage attachmentImage attachment
2 weeks ago

🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀.

⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications?

🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself.

💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control.

#kicklupus by talking to your physician about vaccination and other prevention measures!
... See MoreSee Less

🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀.

⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications?

🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself.

💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control.

#KickLupus by talking to your physician about vaccination and other prevention measures!Image attachment
2 weeks ago

🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 buff.ly/3rUWfTt

🙌 This month, we talk about prevention to #KickLupus
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🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 https://buff.ly/3rUWfTt

🙌  This month, we talk about prevention to #KickLupus
LUPUS EUROPE Uniting people with Lupus throughout Europe
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