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Hydroxychloroquine Decreases the Risk of Death

posted in Drugs used in lupus on August 21, 2022 by

Donald Thomas, MD

Updated December 29, 2023

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Research article shows that taking hydroxychloroquine decreases the risk of death by 83%:

Impact of Antimalarial Adherence on Mortality Among Patients With Newly Diagnosed Systemic Lupus Erythematosus: A Population-Based Cohort Study

Hoque MR, Aviña-Zubieta JA, De Vera MA, Qian Y, Esdaile JM, Xie H. Arthritis Care Res (Hoboken). 2022 Jul;74(7):1089-1097. doi: 10.1002/acr.24550. Epub 2022 Apr 6. PMID: 33411964.

NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.

Key takeaways for how Hydroxychloroquine decreases the risk of death

– Lupus patients who take their hydroxychloroquine regularly had an 83% lower risk of death compared to those who stopped taking it

– They had a 71% lower risk of death compared to those who did not take it regularly

– Lupus patients who miss doses of hydroxychloroquine should figure out strategies to help prevent missing doses

What we already know about how hydroxychloroquine decreases death

  • Close to 1 out of 2 lupus patients are poorly adherent with taking their medications regularly
  • Taking hydroxychloroquine regularly is part of “The Lupus Secrets“
  • CLICK here to learn tips and tricks on taking hydroxychloroquine safely and effectively. If you stopped it due to side effects, you may be able to still take it if you follow my advice. 
  • Hydroxychloroquine has many benefits while being relatively safe (as long as people get their yearly eye exams)
  • One of my favorite quotes is from Dr. Michelle Petri at the Johns Hopkins Lupus Center: “Hydroxychloroquine is the only drug proven to prolong survival for lupus patients.”

Hydroxychloroquine is the only drug proven to prolong survival for lupus patients.

Dr. Michelle Petri, MD, Director, Lupus Center, Johns Hopkins Hospital, Baltimore, MD

What this study adds to our knowledge about hydroxychloroquine and lupus deaths

It strengthens the importance of taking hydroxychloroquine regularly

How the study was done (in brief)

Location: British Columbia, Canada

          Patients: 3062 systemic lupus erythematosus patients followed between January 1997 and March 2015

Method:

  • A retrospective chart review study
  • Observational
  • No placebo group

What should be studied in the future about hydroxychloroquine and lupus

  • What causes of death, in particular, are lowered by taking hydroxychloroquine regularly
  • What is the optimal dose of hydroxychloroquine, or target hydroxychloroquine drug level, that lowers mortality best
  • What are the best strategies to help lupus patients not forget doses of medicines
  • Figure out how to make access to medications, like hydroxychloroquine, more easily accessible for all patients

For more in-depth information on taking hydroxychloroquine safely and effectively for lupus in greater detail:

Read chapter 30 of The Lupus Encyclopedia, edition 2

Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia.

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22 Comments

  1. I took Plaquenil and had my yearly exams for over ten years. The last eye exam showed it was starting to affect my eyes and I had to stop taking it. Hopefully the years I was able to take Plaquenil put me in a good place. I am a 32-year survivor.

    • Kathy: So sorry to hear that. A couple of thoughts… 1) quinacrine is now available again. It is a viable substitute for HCQ. Also, though HCQ is the only drug proven to prolong survival in SLE patients, I suspect that belimumab (Benlysta) could easily show the same thing after further watching. We already know from the 7 year and 13 year long term study results, it shows that it lowers organ damage in lupus patients and is well tolerated.

      Donald Thomas, MD

  2. I have been taking Plaquenil for 30 years. Last summer I had special tests run to assess the health of my eyes. Everything good. I also get regular yearly checks of my eyes. It is such an easy medicine to take. For me no side affects. It brings me comfort to know I am actively managing my SLE with this medicine and contributing to better outcomes and a healthier today and tomorrow for myself.

    • Thanks for sharing your story with others, Penelope.

      Dr T

  3. What is the death rate when combined with other diseases?Eg, Sjögren’s syndrome, fibromyalgia.

    • Lisa: that is such an important question, and I do not recall any studies sorting out how patients do who only have lupus and those who have overlap syndromes (such as Sjogren’s) or concomitant fibromyalgia. I’ll be on the lookout though, and if I see a study, I’ll report on it.

      Donald Thomas, MD

  4. Is that plaquinil or just any hydroxycloroquine?

  5. It didn’t sit will with me. Terrible headaches

  6. I have been on chloroquine since 2013 I am supposed to be taking it everyday but I reduced it to 3 times a week for the fear of it affecting my eyes. I would rather stay on chloroquine than switch to methotrexate as I have heard this drug can cause cancer. Would like some thoughts on this?

  7. Should a person with lupus take a probiotic pill?

  8. What is your view on Plaquenil with Sjogrens but not Lupus. Can it help? I have no visual issues, but peripheral extremity neuropathy causing me great concern. Thanks, George

  9. I have Sjogrens but no Lupus and taking Planquenil with no side effects. My Ophthalmologist Surgeon said I only need a visual field test every two years and he dismisses me when I mention the two yearly tests.

    • Josephine: OMG! I rarely say this, but if that is the case, you need a different eye doctor. It has been the standard of medical care since 2016. I recommend calling other eye doctor offices near you and ask over the phone, “does your doctor have a VF 10-2 and and SD-OCT machine?” Make an appointment with whoever says “yes.” Thanks for posting as this is protecting your vision that we are talking above. Though most people do not get retinopathy, if it is not diagnosed in the early stages with VF 10-2 and SD-OCT then permanent vision loss can occur.

      Here is a link to one of the AAO posts (when it says automated visual field it means VF 10-2 specifically): https://www.aao.org/education/clinical-statement/revised-recommendations-on-screening-chloroquine-h

      It can be hard to change docs, but if they won’t do both of these yearly, you need someone else.

      Donald Thomas, MD

  10. Dr. Thomas,

    I started taking hydroxychloroquine a month or so ago, as I finally accepted that it was my best chance at potentially not progressing into something beyond where I am at. Accepting that I am feeling fine now but may not tomorrow.

    I do my best to keep on an intermittent fasting schedule – something like 16 hour fasting schedule. I would like to do a 48-72 hour fast, but hydroxychloroquine sort of makes that a bit more challenging. If I were going 2-3 days without eating, would it be perfectly fine to just double my dosage before I started the fast, and then skip while fasting? Is hydroxychloroquine sort of like Vitamin-D, where it accumulates in the body?

    Respectfully,
    Gabriel

    • Gabriel: You do not have to eat to take HCQ. Food just makes it easier on the stomach. If HCQ bothers your stomach without food, trying taking smaller amounts at a time (like a half tablet at a time spread out). Or you can double up on your dose on the days you eat to make up for when you don’t take HCQ on the days you do not eat.

      However, make sure to double check these suggestions with your rheumatologist first.

      Good luck! I do intermittent fasting myself and love it. More studies are showing health benefits (makes sense with less insulin spikes etc)

      Donald Thomas, MD

  11. On the topic of keeping a routine for taking HCQ, I have a daily reminder on my phone to take my HCQ after my lunch at 1:30pm every day. If I miss a dose by accident (happens once every three or four months) then I make sure I take it as soon as possible. I was diagnosed in Feb 2018 with lupus and my rheumatologist told me “at the very least you must take your HCQ every day”. Because I eat a strict plant based diet (Super Immuity, Dr. Fuhrman) I have been fortunate to only require one medication, HCQ. I have reduced from 300mg to 200mg once daily. When I have tried to go to 100mg of HCQ I have experienced either frequent heart palpitations or severe shortness of breath. Both have been terrifying. So, I’ll stay on the HCQ until there is a cure for lupus (my fingers are crossed for the Inverse autoimmune vaccine currently in trials).

  12. Took HCQ for 10 years, but never really noticed any improvement, or anything really. Asked my Rheumatologist at Duke of it did anything and he said the evidence that it actually does is pretty weak. I stopped taking it 3 months ago and feel exactly the same.

    The one drug that did make a huge difference was LDN, low dose naltrexone. Primarily for brain fog and fatigue.

    • Maury: LDN can help with symptoms, but it does not help the immunologic abnormalities caused by lupus. The comment you heard was either from someone misinformed or there was a communication (if the comment was made in regards to SLE). No drug has as much overwhelming medical evidence for SLE as hydroxychloroquine, belimumab and anifrolumab. All other drugs pale in comparison as far as the amount of evidence (however, mycophenolate, rituximab and cyclphosphamide would be the next tier).

      HCQ is still the only drug proven to prolong survival in SLE.

      If you have SLE, I’d recommend seeing one of the actual lupus experts there, I know they would not make that comment: https://www.dukehealth.org/locations/duke-lupus-clinic-clinic-1j

      Thanks for you comment and good luck

      DT

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