Hydroxychloroquine Uses: 10 Facts | Rheumatoid Arthritis Warrior

Hydroxychloroquine Uses: 10 Facts

This is my second article addressing the current COVID-19 crisis. You’ll also want to read and share 10 Facts: Coronavirus & Autoimmune Disease. Today we explore the medication crisis being created by the epidemic. I have followed most of these facts as they unfolded in news reports and on Twitter, but I’ve tried to document the facts here with footnotes because there are many false reports related to COVID-19.

Usual hydroxychloroquine uses

Hydroxychloroquine Uses 10 FactsAccording to Mayo Clinic, hydroxychloroquine (HCQ) is used in rheumatoid arthritis (RA) in cases of mild disease as a first-line DMARD because of its favorable toxicity profile.1 This means that the benefits outweigh the risks of hydroxychloroquine use. The dose is often 400 to 600mg per day.2 However with Lupus, hydroxychloroquine is used in virtually every patient to help prevent flares and damage, and improve long-term survival.3 Again, years of experience substantiate its use (200 to 400mg per day).

Hydroxychloroquine is also used to prevent or treat malaria. Doses based upon body weight are used in areas where there is high risk of malaria, often temporarily during travel.

Exploring hydroxychloroquine uses with coronavirus

1. Evidence is poor for hydroxychloroquine use in coronavirus. The evidence of whether HCQ will be a successful treatment or prophylactic in COVID-19 is mixed and inadequate. This recent roundup from Newsweek cites several studies or case examples. A chemist writing for The Conversation agrees we don’t know enough. Studies not only need to be of sufficient size to be statistically significant, but also need to have highly controlled conditions, which usually include control groups. In the midst of a crisis, this is difficult, but stay tuned.
2. The new COVID-19 Global Rheumatology Alliance is up! The Alliance will be able to help guide doctors in treating people with rheumatic diseases. There is so much we need to know! Please help spread the word and tell your own doctor about this new resource. Doctors can enter COVID-19 cases directly and assist this worldwide research. There is also a patient survey. https://rheum-covid.org/
3. YOU can do more to improve evidence used to help others! A new brief survey—COMING SOON—created by Italian researcher Stefano Volinia, will help him study hydroxychloroquine uses in COVID-19. Please do the survey and send the link to everyone you know—WHETHER OR NOT THEY TAKE HCQ & WHETHER OR NOT THEY HAVE LUPUS OR RA! (NOTE: this is a different survey than previous ones I mentioned!) https://bit.ly/COVIDdrugs (Opens soon!)
4. Is hydroxychloroquine use approved for COVID-19? The U.S. FDA has authorized so-called “compassionate” use of hydroxychloroquine in patients who are hospitalized with COVID-19. This Emergency Use Authorization letter indicates that this is limited to that medicine obtained from the Strategic National Stockpile.

More news on hydroxychloroquine uses during COVID-19

5. Patients reported hydroxychloroquine shortages before it made news! I talk with #rheum patients every day and saw this coming. Shortages of HCQ began as soon as someone realized it might help COVID-19. I heard reports of people (non-rheum patients) asking their doctors for HCQ to “protect” them from the virus. Possibly, some of it was bought like the PPE that people attempted to re-sell at a high price. The ACR has responded with letters to alert government officials that many patients depend on HCQ for their health. Why were these letters needed? Early news reports only mentioned HCQ as a “malaria drug” and then Lupus was added; now some also mention RA. As I reported in my previous article, IL-6 inhibitors and JAK inhibitors are also being studied for coronavirus treatments. The ACR has written similar letters about these drugs (such as Xeljanz, Rinvoq, Actemra, Kevzara).
6. COVID-19 hydroxychloroquine use trials are being done. I found 51 trials for COVID-19 in the U.S. on clinicaltrials.gov—most of them drug trials, most of them still recruiting, most of them for hydroxychloroquine.
HCQ uses COVID19 multisystem7. Are COVID-19 HCQ trials really necessary? Clinical trials conducted on one type of patient do not demonstrate safety or efficacy in another type of patient—especially when the immune system is involved. For this reason, we cannot assume that the safety or efficacy is the same with different hydroxychloroquine uses. While rheumatologists know how to use hydroxychloroquine in rheumatoid disease and lupus patients, what to expect, and what side effects to watch out for, this may be very different for people with coronavirus. Patients with psoriasis—another autoimmune disease with some similar treatments to RA—should not use hydroxychloroquine, according to the CDC, because it can result in symptom flares.
8. COVID-19 can affect many parts of the body—which means we need medications to treat it! “Manifestations” of a disease are the symptoms it can cause. Referring to research on COVID-19, a Mayo Clinic rheumatologist tweets: “A multi-organ system involving beast—Pulm, cardiac, GI, ENT, and now Derm manifestations- 1st sign in 10% of patients, and present in 20%.” Do you know any other disease that can affect almost any part of the body? That’s right—RA! My own book, Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease, quotes hundreds of studies that show extra-articular manifestations are not simply “comorbidities.”
9. Hoarding resources—including drugs—harms others. I was stunned several times when I watched medical doctors tell news reporters that they have personally been taking HCQ as a prophylactic in case they are exposed to the virus. Simultaneously, I’ve watched patients on Facebook, Twitter, and Instagram despair over not being able to fill their usual hydroxychloroquine prescriptions. As I mentioned in my last article, drug manufacturers are increasing production to try to meet the need. Yet this does leave me with a sick feeling.
10. Don’t carelessly think that HCQ protects you! There is no clear proof that a Plaquenil prescription protects you. Please follow the guidelines meant to help keep you safe.

HCQ USES. We are not immune.

We can increase understanding about hydroxychloroquine use

YOU CAN HELP. Can we do more than wash our hands and stay home? YES! We can do two things right now to help improve the evidence!

1) Fill out the new survey (COMING SOON) and send the link to everyone you know, especially if someone in their family has had the virus. https://bit.ly/COVIDdrugs

2) Then tell your doctor about the rheumatology case registry so they can add any patients who’ve had the virus. http://rheum-covid.org/

HOW ARE YOU DOING? HAVE YOU HAD COVID-19? DO YOU TAKE HCQ OR ANOTHER DMARD?

What you need to know & how you can HELP research for hydroxychloroquine, #COVID, #lupus and RA #rheum. Click To Tweet

Recommended reading

FOOTNOTES
1Matteson, Eric L. Current Treatment Strategies for Rheumatoid Arthritis. Mayo Clinic Proceedings, Volume 75, Issue 1, 69 – 74. Available from: https://www.mayoclinicproceedings.org/article/S0025-6196(11)64257-2/fulltext
2 Medscape. Dosing and uses: hydroxychloroquine sulfate (Rx). Available from: https://reference.medscape.com/drug/plaquenil-hydroxychloroquine-sulfate-343205
3Chowdhary, Vaidehi R. Broad Concepts in Management of Systemic Lupus Erythematosus. Mayo Clinic Proceedings, Volume 92, Issue 5, 744 – 761. Available from: https://www.mayoclinicproceedings.org/article/S0025-6196(17)30138-6/fulltext

ABBREVIATIONS:
ACR: American College of Rheumatology
CDC: Centers for Disease Control (U.S.)
COVID-19: coronavirus disease 2019
FDA: Food and Drug Administration (U.S.)
HCQ: hydroxychloroquine (brand: Plaquenil)
PPE: personal protective equipment (like masks and gloves)
RA: rheumatoid arthritis (rheumatoid disease)

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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4 thoughts on “Hydroxychloroquine Uses: 10 Facts

  • April 15, 2020 at 1:38 pm
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    This worries me as I’m on hydroxychloroquine and Xeljanz along with Arava for my RD. This combination has been working wonderfully for me for a few years now and I just don’t want to upset the balance act. I was able to get a 30 day supply of the HCQ, and so far no problems with Xeljanz. I live in rural Minnesota.

    Reply
  • April 15, 2020 at 1:39 pm
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    Hi Kelly,
    Thank you for this article. I have been on HCQ for many years. I truly believe it is one of the reasons my Lupus is in remission along with Rituxan infusions. I also have RAD and fibromyalgia. I have been really worried about getting my next prescription filled. I talked to my Rheumatologist about getting my next prescription filled early. I do mail order and they supposedly will be sending me my meds. It is a huge relief for me.
    I hope you and your family are safe and doing well. Those of us with autoimmune disease really need to be careful.
    Thank you again…..💗🙏🏻

    Reply
  • April 15, 2020 at 6:11 pm
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    Please read. Demand is high & I don’t want to change meds that have worked.

    Reply
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