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
3 days ago

🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a person's wider context, including these non-clinical factors.

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

www.youtube.com/watch?v=RT2Qtllx2-s
... See MoreSee Less

🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus

👨‍⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a persons wider context, including these non-clinical factors. 

🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.

https://www.youtube.com/watch?v=RT2Qtllx2-s

13 CommentsComment on Facebook

Daniel Guimarães de Oliveira - Imunologia Clínica

That's true! Many people with problems are compelled to stop their cures because they do not have the money

I was never a person who believe in herbs as a means of treatment, now I know better, herbs has more efficiency than any pharmaceutical medicine. I suffered from FND with no results from pharmaceutical medicines, but after using herbal medicine from Dr Ehota I got cured of my ailments. I will advice you to try herbal medicine as well Contact Dr Ehota Dr Ehota

View more comments

4 days ago

‼️Today is #worldsjogrensday, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.
... See MoreSee Less

‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

💁‍♀️ Although Sjögrens is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

➡️ Follow Sjögren Europe to know more.

5 CommentsComment on Facebook

I know

Truly, natural remedies do work. If they didn't, we wouldn't have used them for thousands of years. And, pharmaceutical companies wouldn't be studying plants, taking extracts of them, and patenting them as drugs.this is not a claim or lies I was totally cured from herpes and neuropathy by Dr osewen, His remedy is surely the best. I suggest you try him out if you are having any health challenges and also get cured too, give him a try 👇👇 www.facebook.com/114932024817210

Meeting dr edaghonghon here on Facebook has really been one of the best time of my life. After years of suffering, I am finally cured permanently from HSV1 and 2, thanks doc God bless you www.facebook.com/pg/Dr-Edaghoghon-107119921039442/community/ OR Whatsapp wa.me/2349056731866

View more comments

1 week ago

🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches.

🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.

youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik
... See MoreSee Less

🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.

🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches. 

🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.

https://youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik

4 CommentsComment on Facebook

Wow, it would certainly make an enormous difference in our lives!!! Iron deficiency can be difficult to overcome because of stomach problems but it would certainly be worth trying to get rid of this perennial fatigue.

Natural🌿remedies do work. If they didn't, we wouldn't have used them for thousands of years. And, pharmaceutical companies wouldn't be studying plants, taking extracts of them, and patenting them as drugs.this is not a claim or lies I was totally cured from a deadly disease and neuropathy by Herbalist His remedy is surely the best. I suggest you try him out if you are having any health challenges and also get cured too, give him a try 👇👇 Dr Osabor herbal home

Herbal remedies is the most recent cure I can only imagine I thought it was lies when I saw some one testifying about Dr Osabor. I was so happy that I get back my health, and with the help of dr Osabor. I was cured you can also give a try 👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻 www.facebook.com/Dr-osabor-Herbal-home-113980518216580/

2 weeks ago

👨‍⚕️ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
... See MoreSee Less

👨‍⚕️ Dont miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!

📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.

🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.

🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!

https://youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zmImage attachment
LUPUS EUROPE Uniting people with Lupus throughout Europe
Send