If you are actually sick with coronavirus and have an autoimmune disease, please call your doctor and follow her / his advice about whether to continue your usual medications and whether you need specific medical care. Part of the reason that there is no cure yet for diseases like rheumatoid arthritis / rheumatoid disease is that we are not all alike, so follow what your doctor advises for you. For the rest of us who are just trying to be well informed, let’s look at some interesting facts related to coronavirus and autoimmune disease.
1. The American College of Rheumatology has advised patients with rheumatic autoimmune diseases not to stop taking DMARDs out of fear of coronavirus.
2. Small studies are showing hydroxychloroquine / Plaquenil may help treat or protect people from serious illness due to COVID 19.1,2 This is possibly causing shortages of this drug used by many with autoimmune disease, so manufacturers have increased production.3,4,5
3. Italian investigator Stefano Volinia has a short survey for any patients taking hydroxychloroquine / Plaquenil for an autoimmune disease or have had COVID-19. You can help by doing this survey and sharing this link:
Click here for the short survey. UPDATE! NEW SURVEY HERE: https://bit.ly/COVIDdrugs
4. According to the US National Institutes of Health, 24 million Americans have an autoimmune disease, plus at least 8 million carry antibodies showing that such a disease will likely develop in the future (like the ACPA antibodies that indicate RA).6 These should be included in those with “underlying conditions” referred to so often in warnings about those more vulnerable to coronavirus.
5. People with autoimmune diseases will not all respond the same way to COVID 19. However having a malfunctioning immune system and being immune suppressed by our medications could likely make us more vulnerable to contracting the virus or becoming seriously ill.
6. Certain autoimmune disease medications may help people fight coronavirus. Small trials in China and Italy have shown that Actemra / tocilizumab, which inhibits IL-6, may help treat people who have pneumonia from COVID 19. Genentech has begun a Phase 3 trial called COVACTA. While this is one of dozens of drugs being investigated for the coronavirus, many with autoimmune disease already take this or another medicine that results in inhibition of IL-6 signaling (Actemra, Kevzara, and JAK inhibitors like Rinvoq and Xeljanz).
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7. The newly formed COVID-19 Global Rheumatology Alliance is creating a secure international case reporting registry that will eventually be able to help guide doctors in assessing and treating patients with rheumatologic disease and evaluating risk of infection in patients who are immune suppressed. Stay tuned for more information and to learn how you can help. Other COVID-19 registries are also being formed, such as this one for IBD. UPDATE: The registry and survey are both open! You can help—complete the survey and tell your doctor about this registry!
8. Respiratory viral infections like COVID 19 can increase the risk of developing rheumatoid arthritis in those who are genetically susceptible to autoimmune disease.7
9. People with autoimmune disease are more vulnerable in a health crisis for other reasons. They often suffer financial strain from high medical costs (my meds cost more than food). Lower incomes often result from disability. They have increased risk by greater contact with medical systems (infusions, medical appointments, lab visits, and so-called elective surgery—like joint replacements).
10. Despite progress, there is still a great need to improve awareness that rheumatoid disease is not a type of arthritis and that arthritis is just one symptom of RD. Over the past week, as hydroxychloroquine (Plaquenil) was in the news, I heard many doctors, scientists, politicians, and reporters referring to this disease as simply “arthritis.” Unfortunately the NIH page referred to above illustrates this disease by a drawing of deformed finger joints. (Something I have now in late stage disease, but most don’t!) Of course this disease is more than hands and does not usually start in the hands. For more examples of the preposterous way RD is described in the media, check out the RA Warrior Hall of Shame.
- If you are worried or you live in a hotspot with a high COVID-19 infection rate, make a plan with your doctor ahead of time about what to do if you get sick.
- If you have had COVID-19 or if you take Plaquenil / hydroxychloroquine, take the survey to help investigators learn more about how this medicine does or does not impact coronavirus. You can still share the link with other patients if you don’t take this medicine. https://bit.ly/COVIDdrugs
- Follow the old-fashioned advice about hand washing and disinfecting surfaces as well as possible, eat healthy, and stay hydrated. And follow the modern strategy of lowering everyone’s infection risk through social distancing since research shows it is the most effective strategy.
WHAT DO YOU THINK ABOUT COVID-19 AND AUTOIMMUNE DISEASE? WHAT IS YOUR EXPERIENCE?
1 Liu, J., Cao, R., Xu, M. et al. Hydroxychloroquine, a less toxic derivative of chloroquine, is effective in inhibiting SARS-CoV-2 infection in vitro. Cell Discov 6, 16 (2020). https://doi.org/10.1038/s41421-020-0156-0
2 Wang, M., Cao, R., Zhang, L. et al. Remdesivir and chloroquine effectively inhibit the recently emerged novel coronavirus (2019-nCoV) in vitro. Cell Res 30, 269 271 (2020). https://doi.org/10.1038/s41422-020-0282-0
3 Dunn A. Business Insider. Elon Musk and Trump are touting a 1940s malaria pill as a potential coronavirus treatment. But supplies are already running short as prescriptions spike. (2020 Mar 20). https://www.businessinsider.com/chloroquine-hydroxychloroquine-shortage-coronavirus-treatment-lupus-arthritis-2020-3
4 Lockshin, M.D. Hydroxychloroquine (Plaquenil) and Chloroquine Shortage Caused by COVID-19 Coronavirus Claims. Hospital for Special Surgery (2020 Mar 21). https://www.hss.edu/conditions_hydroxychloroquine-plaquenil-chloroquine-shortage-covid-19-coronavirus.asp#shortage
5 Silverman, E. Teva and Mylan to jumpstart production of old malaria drug to fight the novel coronavirus. Stat News (2020,3 19). https://www.statnews.com/pharmalot/2020/03/19/teva-mylan-coronavirus-covid19-malaria/
6 Joo, Y.B., Lim, Y., Kim, K. et al. Respiratory viral infections and the risk of rheumatoid arthritis. Arthritis Res Ther 21, 199 (2019). https://doi.org/10.1186/s13075-019-1977-9
Edits: updated survey info 4/14/20
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