“Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less.” -Marie Curie
We at More Than Lupus want you to stay as healthy as you can during this COVID-19 global health situation. We know there is a variety of information out there already, however; here is our simplified version for those of you who just want the facts, particularity in relation to how this might affect you, if you have lupus.
We have compiled a list of the most asked patient questions and answers for your convenience. We hope you find this helpful as you navigate this health challenge.
What is coronavirus disease 2019 or COVID-19 ?
This is a new virus that has not been previously identified. The virus causing coronavirus disease 2019 (COVID-19), is not the same as the coronaviruses that commonly circulate among humans and cause mild illness, like the common cold.
Where did it come from?
The disease was first identified in Wuhan, Hubei Province, China in November of 2019. On February 11, 2020 the World Health Organization announced an official name for the virus. COVID-10 is an abbreviation of “CO” standing for ‘corona’ “VI” for ‘virus' and “D” or ‘disease.’ The 19 refers to the year “2019” which it was identified.
How does COVID-19 spread and what are the symptoms?
It is primarily spread through respiratory droplets, which means to become infected from someone else, you must be within 6 feet of them. They believe it is possible to contract the virus by touching a surface or object that has the virus on it and then touching your mouth, nose, and eyes. Symptoms generally appear within two to 14 days of exposure and include fever, cough, runny rose, and difficulty breathing.
How long does it take for the symptoms to resolve?
The majority of cases are mild, and symptoms dissipate in a few days. However, the CDC believes that an isolation period of 14 days is recommended to avoid accidentally spreading the virus, even if you feel better.
Why are those with lupus at greater risk to contract COVID-19?
Those with lupus are at a greater risk due to increased immunosuppression. Immunosuppression is a reduction in the efficacy and activation of the immune system. This can occur naturally in some parts of the immune system, as well as from other conditions like lupus, and other lupus overlap diseases and medications.
What medications can increase immunosuppression?
Many lupus patients are treated with immunosuppressive or “immune modulator” medications in order to control inflammation and the overactive immune system that lupus and lupus overlap diseases can cause. These medications are often used when steroids are either not tolerated or not effective.
Some of these include:
Methotrexate (Rheumatrex™ Trexall)
Cyclosporine (Neoral, Sandimmune, Gengraf)
Corticosteroids (prednisone, deltasone, millipred, orasone) are technically in a different class of medications, they can also suppress a person's immune system over time.
What are the other risk factors with COVID-19?
Per CDC guidelines, anyone on an immunosuppressant medication (such as the ones listed above); even if you are in remission, are at increased risk.
In addition to the increased risk of immunosuppression from medication, it is important to remember that with lupus, the body is spending a large amount of energy attacking the wrong cells by mistake, leaving you more susceptible to viruses and bacteria - which can lead to infections. Infections are the number two cause of death with those living with lupus. A flu bug can turn deadly for those who have lupus and are on immunosuppressant medications.
Other risk factors include:
Anyone with a systemic autoimmune disease (lupus, RA, Sjogren's, vasculitis, etc) who is not in remission.
Anyone who has heart or lung disease or diabetes.
Anyone 60 years old and older.
Anyone who has low gamma globulin levels (CVID, hypogammaglobulinemia).
Anyone who seems to get infections.
Anyone with chronic vitamin D deficiency.
If immunosuppressant medications can increase the risk of contracting COVID-19, should I stop them?
It is important to always take your medication as prescribed by your physician. DO NOT STOP TAKING your medication, unless specifically ordered to by a medical doctor. Not taking your medication correctly can result in far more serious complications than COVID-19.
It is also important to follow-up with your rheumatologist and keep your appointments (unless you have a fever or are showing signs of COVID-19). Take advantage of your virtual chart, and email your doctor with any questions you have!
How is COVID-19 treated?
There is no treatment currently approved by the FDA to treat COVID-19. People who have contracted the virus should receive supportive care, such as rest, fluids, and fever control. For severe cases, patients should be treated at a hospital for COVID-19 related pneumonia or other complications.
Do I need to wear a facemask?
If you are sick: you should wear a facemask when you are around other people and before you enter a healthcare provider’s office. If you are NOT sick: you do not need to wear a facemask unless you are caring for someone who is sick (and they are not able to wear a facemask). Facemasks are in short supply and are needed for medical professionals and caregivers!
There is talk that the lupus drug hydroxychloroquine (Plaquenil) might be a treatment for COVID-19, is that true?
This is true. Clinical trials have begun in the US to test the effectiveness of treating the COVID-19 related pneumonia with hydroxychloroquine. Here is a link to the clinical trial study, as well as additional studies in Mexico.
This news is positive on many levels, it could mean saving hundreds of thousands of lives if the medication can help alleviate COVID-19 related pneumonia. It could also mean extra protection for those of us who have been taking the medication for some time.
However, there could be issues with medication availability and affordability as it becomes more in need. The UK has already placed a ban on parallel exporting and hoarding.
How can I be proactive with my health during this time?
Due to the possible future demand of hydroxychloroquine, reach out to your pharmacy to see if you can get a 60 day advance. Also, make sure you have at least two weeks worth of medication on hand.
It is important to practice “social distancing” (6 feet) and be mindful to not shake hands, hug, or even fist bump.
Make sure you wash your hands multiple times a day for at least 20 seconds using soap and water.
Hand-sanitizers are good, but only useful if they have at least 60% alcohol content.
Avoid touching your eyes, nose, and mouth with unwashed hands.
Stay home if you are sick, except to get medical care.
Cover your mouth and cough and sneeze into the inside of your elbow.
IF you are sick, wear a mask.
Clean and disinfect surfaces daily. This means tables, doorknobs, light switches, countertops, desks, phones, keyboards, toilets, and sinks.
Here is a great summary from registered nurse and lupus patient, Ana: "It’s so important to remember to keep ourselves as low stress and healthy as possible. Keep up with all of our vaccines, get rest, eat healthy, exercise and take some vitamin d! Also, it’s so hard for those with lupus who can’t take anything like echinacea or elderberry which might boost the immune system."
Thank you Ana, and thank you all for taking the time to read and share this blog! Now go wash your hands...again!
For more updates on the latest news on COVID-19 and additional resources, please visit:
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.