There are more questions than answers when it comes to COVID-19 and immunosuppressive drugs. Do they help the immune system fight off the virus or do they make the user more susceptible? Why are they being considered as a treatment for COVID-19 and what does that mean for the people who rely on them?
Part of what makes some people with COVID-19 so critically ill is the body’s release of excessive amounts of inflammatory chemicals (referred to as cytokines). Some of the drugs used to treat autoimmune conditions (because they limit or block some of those same chemicals) are being tested as treatment for COVID-19. After President Trump announced that chloroquine and hydroxychloroquine, which are drugs commonly used to treat rheumatoid arthritis and lupus, may be a "game-changer" in the fight against coronavirus, there have been reports that these drugs are being rationed and dispensing rules have changed.
What’s really happening with Plaquenil?
Deborah Kepes, a past Mymee client, was diagnosed with Lupus at the age of 28. Lupus is a mysterious autoimmune disease in which the immune system attacks healthy cells, but the area of attack often differs from person to person. For Deborah, her hardest hit organ is her lungs. She is short of breath after just walking across a room, needs a break after showering and struggles with chronic asthma. She also developed rheumatoid arthritis which impacted her mobility to the point where she required a double knee replacement. Luckily, Deborah’s symptoms are mostly controlled with the medication, Plaquenil, which she has been taking twice a day for 30 years. She has always had a 3 month supply filled, that is until her last visit to the pharmacist.
Deborah explained, “My pharmacists know me pretty well, they know how delicate my situation is. So when I went to fill my typical prescription, my regular pharmacist, William, pulled me aside. He said, ‘Deborah, I have been informed not to fill 3 month prescriptions for Plaquenil. But I know you need this, so I grabbed every pill I have. It won’t fill your whole prescription, but it’s pretty darn close’.”
Lucky for Deborah, she had someone like William. But for many patients that rely on Plaquenil, the story has a different ending. “Most of my Lupus Support Group Members have been saying that they can only get 2 week prescriptions right now. We have all been told that the reason for the limit is due to diverting the drug for usage with COVID-19 patients.” said Deborah.
Whether chloroquine or hydroxychloroquine will ultimately prove helpful in the fight against COVID-19 remains unclear. Thus far, results from studies are mixed and until the data from on-going studies is analyzed and published, the use of these drugs to treat SARS-CoV is experimental.
Deborah explained, “My biggest concern is that, as an autoimmune patient, I am already more susceptible to diseases and infections. By having to go to the pharmacy every 2 weeks, instead of every 3 months, I am exposing myself that much more to Coronavirus and other illnesses that could have a severe impact on my health.”
As most states are following stay at home orders, it’s true that limiting your trips to public places is extremely important, especially if you have underlying conditions. If you are facing a situation where your medications are being filled in lower quantities, don’t panic. Many pharmacies offer drive-through or delivery services which can help lower your exposure. If your pharmacy doesn’t offer that, you can always tap a healthy friend or neighbor to pick it up for you.
While access is a concern for some, others are seeing it as a potential opportunity. There are actions you can take beyond medication to manage autoimmune disease, and in some cases, put it into remission altogether.
Mymee is a program that is focused on helping people decode the underlying triggers in their daily life that cause symptoms in the first place. “I believe in science. I’ve been taking medications for as long as I can remember. But I also know that there is a clear connection between my diet and physical activity and my health. With the Mymee program, I was able to distinguish specific habits that caused my symptoms to flare. ” explained Deborah.
Should I stop taking my medications during COVID-19?
If you are taking immune-suppressing or modulating medication to treat an autoimmune disease, you may be wondering if you can stop this medication. This is an important issue that needs to be discussed directly with your physician, who can make a recommendation based on your specific situation. Dr. Nicole Bundy, Chief Medical Officer at Mymee states, "By suddenly stopping their immunosuppressive medications, some patients run the risk of their underlying autoimmune disease flaring. Active autoimmune disease not only poses serious health risks in and of itself, but it can also leave a person at greater risk of becoming seriously ill from infectious diseases, including SARS-CoV. Furthermore, pausing a drug, could impact its effectiveness when restarted."
On April 13th, 2020 the American College of Rheumatology (ACR) issued a guidance document for the care of adult patients with rheumatic diseases. Fourteen disease specialists created this report to use as guidance for patients with stable and newly diagnosed disease, and separated the recommendations according to infection risk. To read our summary of this report and what it means for you, read “Medication Guidance Amidst COVID-19: American College of Rheumatology”
Navigating these issues as an autoimmune patient is not cut and dry, and trying to figure out the best course of action during a global pandemic can be very difficult and confusing. Are you worried about your immunity? Wondering if trigger identification could be beneficial to you? During the month of April, we are providing a free coaching session to offer you personalized support and guidance related to COVID-19. For your free, no commitment coaching session, sign up here.
This is part 4 in our COVID-19 and Autoimmunity Blog Series, read the rest here.