Living with Lupus During the COVID-19 Outbreak
Editorial Note: This article was written on March 26, 2020. Further developments in what we know about the Coronavirus are continuously emerging.
The COVID-19 virus is here and it has everyone scared, especially those of us living with autoimmune conditions like lupus. We are scared that we may be exposed or worse. So we are all doing our best to protect ourselves. But now we are facing an even bigger battle. We face potential organ damage due to the unavailability of hydroxychloroquine.
This is due to FDA reports that antimalarials have potentially been found as an effective treatment for COVID-19.1 This new information about the drug has caused paranoia among those who take it daily.
Nonprofits and medical organizations call for action
The Lupus Foundation of America, American College of Rheumatology, American Academy of Dermatology, and the Arthritis Foundation issued a joint statement urging the White House Coronavirus Task Force and governors across the country to make sure there is access to those who need it after major news networks reported that doctors are prescribing it for people that have no medical reason to have the medicine, and patients on hydroxychloroquine have been hoarding it.2
People with lupus need antimalarials
People like me, living with lupus, understand that there is some research1 showing it may have some effectiveness, but we also understand the fact that this drug is a MUST HAVE for many with lupus.
Most people have no idea that the mainstay treatment for lupus is hydroxychloroquine. This means that most people with lupus will take it daily for at least a part of their treatment, while others will remain on it for the foreseeable future. The general public only knows what they are hearing on the news. When they hear “hydroxychloroquine,” they think possible treatment for COVID-19. What the public doesn’t know is what this drug is or why it’s taken. They also don’t understand the potential side effects that this drug carries. So I want to take a moment to explain all of that.
What is hydroxychloroquine?
Hydroxychloroquine is classified as an antimalarial drug and is similar to chloroquine also classified as an antimalarial drug. Currently, it is being used to treat malaria, as well as lupus and rheumatoid arthritis.3
There is no clear understanding of how it works to treat malaria, however. What is known, is that hydroxychloroquine works at the cellular level to disrupt critical cell processes, and inactivating the body’s immune response. Due to the fact that the body’s natural immune response causes inflammation and other disease symptoms (pain, fever, and body aches).3 This autoimmune process works to stop systemic conditions like lupus. Hydroxychloroquine is essential in working to prevent organ damage in those with lupus.
What are the potential side effects?
These drugs, like any other, do not come without side effects, including:4
- Loss of appetite
- Skin rashes
While rare it can also cause vision loss due to retinal toxicity.5
Tips for finding hydroxychloroquine
Due to the fact that this drug is now widely known as a possible treatment for COVID-19, it has become harder for those who need it to find it. That being said, there are things you can do to help you find the medication:
- Contact your pharmacy before asking your doctor to refill your prescription to ensure that the pharmacy has the medication available.
- If your pharmacy does not have your medication available, call around to other local pharmacies to see where you can fill your prescription.
- Contact your physician and ask for 60 to 90 days instead of the normal 30-day prescription.
What NOT to do:
- Do not hoard Hydroxychloroquine. This helps no one in the long run.
- Do not sell your prescription to others wanting to have the medication on hand “just in case.”
- Do not treat your family and friends with your hydroxychloroquine with no order from their physician.
Coping despite COVID-19
This is a scary time for everyone, as this is not something we have ever experienced before. For those of us with autoimmune conditions, it’s definitely a little scarier. This is simply because we are at such a higher risk of getting COVID-19, and it will be much harder for us to survive. To add on the extra stress of possibly not being able to get access to a medication that we need is even more frightening.
We all need to remember to follow the instructions from your local health department in regards to quarantine protocol, as well as the instructions of your physicians. Most importantly, we need to remember that it is never safe for anyone to take a medication that is not prescribed for them. So please, even if you want to help, do not sell or treat others with your hydroxychloroquine.
Did you have the Epstein-Barr virus (EBV) or Mononucleosis (mono) before learning about your lupus diagnosis?