Back at the start of February I wrote an article about why I was worried about the pandemic-potential of the Coronavirus as a biologic user. Biologics and coronavirus, or any respiratory virus doing the rounds, can be a lethal combination.
Coronavirus – The worst time to be right
Unfortunately, those fears went on to be justified and Covid-19, as it’s now being labelled, has changed the world as we know it. Almost 30% of the world are under some form of lockdown (Buchholz, 2020), financial markets are spiralling and governments are taking unprecedented measures to limit the spread, protect their health services and support their people.
We are at war against a biological threat and this is the most restricted many have been with regards to their civil liberties in generations.
Since writing my first article on this subject, my site has seen a big upturn in visitors, particularly first time visitors, searching for more information on the risks and relationship between biologics and coronavirus. Firstly, welcome and I hope you find my articles useful. Secondly, it made me realise that there was limited information on this subject. Or at least, a lot of people searching for said information at this time.
It should be noted that I am no expert. I’m not even medically trained. But I do have a lot of information and built up knowledge on biologics over the years as a user and advocate for my own health.
What are biologics?
Biologic treatments work by disrupting signals to the cells that make up your immune system (Kiefer, 2014). If you are being treated with biologics or biosimilars (both referred to as biologics for the rest of the article) for arthritis, Crohn’s and other autoimmune conditions, then you are immunosuppressed. Your immune system is compromised as a way of controlling your natural response that causes damage in the body.
I explain my arthritis to people as my body having an overactive immune system. It gets bored and picks fights in my joints, skin, eyes etc. and depending on where the self-inflicted attack is, is what it’s called. Arthritis, psoriasis or uveitis in the examples above.
Biologics manufacturers and your medical team make the risks of biologics very clear to you at the outset. You must carry an alert card that explains how prone to infection you are (above) and have regular monitoring blood tests to ensure it’s not damaging your immune system too much. Biologic therapy makes you prone to pneumonia, chest infections and other upper respiratory infections. Anyone who’s been on biologics for more than a few months, will soon realise this. You are advised not to drink, to stay healthy and at a healthy weight. You must also have the flu jab.
These are serious medication but they are also life changing ones.
What’s so dangerous about biologics and coronavirus?
There are three parts to this. although a medical professional may be able to provide more.
Firstly, as mentioned, if treated by biologics you are immunosuppressed (referred to by some as immunocompromised). This means that we don’t have a strong line of defence in the first place. In order to manage an overactive immune system, you essentially dampen it down. An example of this would be that my wife might get a cough or sore throat for a week. On biologics, I will get the same but it might last weeks and turn into a two-week long chest infection after that. Often a simple common cold will linger with me for many weeks as my body adjusts to fight it.
Secondly, as with steroids, biologics can mask common symptoms of infection such as fever (as highlighted on the alert card). This can put you at risk of seeking medical help when it’s too late. For this reason, biologics users are encouraged to speak to their doctor at the first sign of infection.
Finally, and the biggest factor with regards to biologics and coronavirus – the fact that you are prone to upper respiratory infections. Covid-19 attacks the lungs and respiratory tract – the exact same place biologics makes you vulnerable. It’s why my ears pricked up back in January the first time I heard about this virus and it’s potential. And probably why I’ve had so much eye-rolling and claims of being over dramatic since writing about this subject. Unfortunately for us all, the majority has woken up to the very real and present danger Coronavirus now poses to us all.
An added complication
There’s one final complication for those immunosuppressed on biologics during this time. The general medical practice for biologics (at least here in the UK, may vary country to country) is to stop treatment at the first sign of infection. So if I get a temperature or productive cough, I skip my next injection until I feel well again. This allows the immune system to recover and fight off any infection. It also removes the risk of compromising the immune system further when you have a potentially dangerous infection.
The issue with this is that it has been widely reported that the way in which Covid-19 kills, is via a massive immune response that damages and eventually shuts down organs (Lee, 2020). This is due to your immune system essentially panicking with a foe it’s not encountered before. In some minority cases, the body’s defences can overreact and damage beyond repair the host’s body, way beyond that of the lungs.
Therefore, biologics users are facing a big unknown at this point. It has been suggested that stopping biologics as you normally would at first sign of infection, could contribute to this heightened immune response in those with autoimmune conditions. Although there are no formal studies out yet to support this. It seems to be a theory doing the rounds and certainly one I have had mentioned to me a few times by medical professionals. There are also studies taking place in Asia that suggest biologics can be used to help fight the infection in the critically ill. Again, we await papers to be released.
Unfortunately, this is a rapidly moving situation and sadly, many more will suffer before we have the appropriate level of data to draw a conclusion.
How can I help?
If you would like more information on this subject or would like to help, there are two primary registries running at the moment to gather data. These aim to collect the data on infection for those with autoimmune conditions in order to build a picture on how Covid-19 impacts those patients.
The European Patient Registry is a self-registering study that: “Anyone with a rheumatological, autoimmune or autoinflammatory disease is invited to take part“. It takes two minutes to sign up and each week you will be emailed a quick survey to fill out on any symptoms you may have. I would strongly encourage you to get involved in this to help others in the future in our position.
The Global Rheumatology Alliance have also set up a registry for care providers to register cases. The early figures from a limited data set in the tweet above, look positive.
Are you on biologics? How do you feel at this time about coronavirus? Let us know in the comments.
Buchholz, K. (2020). Infographic: What Share of the World Population Is Already on COVID-19 Lockdown? [online] Statista Infographics. Available at: https://www.statista.com/chart/21240/enforced-covid-19-lockdowns-by-people-affected-per-country/ [Accessed 31 Mar. 2020].
Jarproject.org. (2020). Juvenile Arthritis Research – COVID-19. [online] Available at: https://www.jarproject.org/covid [Accessed 1 Apr. 2020].
Kiefer, D. (2014). Understanding Biologic Treatments for Rheumatoid Arthritis. [online] Healthline. Available at: https://www.healthline.com/health/rheumatoid-arthritis/understanding-biologic-treatments-for-ra#1 [Accessed 31 Mar. 2020].
Lee, B.Y. (2020). How Does The COVID-19 Coronavirus Kill? What Happens When You Get Infected. Forbes. [online] 22 Mar. Available at: https://www.forbes.com/sites/brucelee/2020/03/21/how-does-the-covid-19-coronavirus-kill-what-happens-when-you-get-infected/#3d6bc5ba6146 [Accessed 1 Apr. 2020].
The COVID-19 Global Rheumatology Registry Team (2020). The COVID-19 Global Rheumatology Alliance | The Global Rheumatology Community’s response to the worldwide COVID-19 Pandemic. [online] Rheum-covid.org. Available at: https://rheum-covid.org/ [Accessed 1 Apr. 2020].