10 Facts: Coronavirus & Autoimmune Disease | Rheumatoid Arthritis Warrior

10 Facts: Coronavirus & Autoimmune Disease

What about coronavirus and autoimmune disease?

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.

 

Facts about coronavirus and autoimmune disease

Coronavirus and Autoimmune Disease1. 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.

What to do: coronavirus and autoimmune disease

  1. 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.
  2. 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
  3. 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.
Coronavirus and autoimmune disease: What can we do? Are we more vulnerable? #rheum #COVID_19 #Plaquenil Click To Tweet

WHAT DO YOU THINK ABOUT COVID-19 AND AUTOIMMUNE DISEASE? WHAT IS YOUR EXPERIENCE?

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FOOTNOTES:

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
7 https://www.niehs.nih.gov/health/topics/conditions/autoimmune/index.cfm

Edits: updated survey info 4/14/20

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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9 thoughts on “10 Facts: Coronavirus & Autoimmune Disease

  • March 21, 2020 at 7:29 pm
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    Thank you Kelly for this article. I have been concerned about the covid-19 since my immune system is as one Dr. put it wacky. Also this past Sept. I landed in the hospital with pneumonia and it quickly turned bad. The only other thing I tested positive for was Rhino virus which is a cold. Became very ill the third day and couldn’t breath and moved to ICU and was one step from being on life support. Thankfully that didn’t happen and I recovered nicely. So I’ve been really cautious since then taking extra care about being around anyone sick and really disenfecting and hand washing. SO this virus does have me a little on edge. Take care and be safe Warriors.

    Reply
  • March 22, 2020 at 8:07 am
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    Thank you for your information. As many rheumatoid disease patients are treated with hydroxychloroquine and now they may use this for Covid 19 patients as well, do you think we will experience a shortage of this drug? Already local pharmacies here in Chicago are reporting that they are out of the drug. What steps are being taken for the protection of rheumatoid disease patients who are already possibly at greater than average risk for Covid 19 and who are dependent upon hydroxychloroquine to keep their RD under control?

    Reply
  • March 22, 2020 at 9:33 am
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    I’ve known I was part of the “at risk population” since day one. I catch the flu – I catch it for two weeks. I catch an upper respiratory infection I’m down for weeks. My immune system is too busy to deal with something else.

    Covid-19 terrifies me. I am very protective of my organs / systems, since RA attacks those things I try to keep them strong. I worry most about Covid-19 complications that’s for sure.

    However, now sneaking in there are concerns they’re going to take my meds away from me. I am on Xeljanz. I appreciate that the world needs help – but the world doesn’t much care about our community and how we are being killed off.

    It’s just frustrating, worrisome and scary.

    Reply
    • March 24, 2020 at 4:44 pm
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      What does Xeljanz have to do with Plaquinel or drugs being tested for the virus. Why would you even say this? Thank you in advance,

      Reply
      • April 4, 2020 at 8:36 pm
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        Read paragraph #6 above for your answer.

        Reply
  • March 28, 2020 at 4:21 pm
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    I am over 65 and have RD. I was diagnosed over 12 years ago. I take Plaquenil everyday and get Orencia IV Infusions once a month. I’m due for my next infusion next week

    Since the outbreak of the Coronavirus, I have stayed home and only been out only to go for a walk. I live with my husband.its just the two of us.

    Although my rheumatologist Nurse, assured me that it’s still important for me to get my infusion next week…that they have a protocol set up at the clinic…I’m becoming concerned about going.

    With the rising numbers of Coronavirus in my state and county…I was thinking of asking them if I can wait till next month to get the infusion.

    Is anyone else struggling with this kind of situation????

    Reply
  • Pingback: ACR Clinical Guidance in Treating Rheumatic Diseases - Rheumatoid Patient Foundation

  • April 28, 2020 at 5:53 pm
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    Thanks so much for sharing your journey Kelly. I would really like the rinvoq research study info. You mentioned it. I began rinvoq 3 months ago after being diagnosed with RA a yr ago. Humira did NOTHING to help me. Rinvoq seems to be a winner with me.

    Reply
  • May 8, 2020 at 7:25 am
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    Hydroxychloroquine and chloroquine are two medications that have been used for many decades to treat malaria and autoimmune conditions like rheumatoid arthritis and lupus.

    There are no drugs or other therapeutics presently approved by the FDA to prevent or treat COVID-19.

    Reply
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