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Hydroxychloroquine and chloroquine (antimalarial drugs): quinism and the risk of sudden and lasting neuropsychiatric effects

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Hydroxychloroquine

The Quinism Foundation, a nonprofit charitable organization “promotes and supports education and research on quinism, the family of medical disorders caused by poisoning by mefloquine, tafenoquine, chloroquine, and related quinoline drugs.”

Executive Director of the foundation, Dr. Remington Nevin, MD, MPH, DrPH, is a Johns-Hopkins trained psychiatric epidemiologist and drug safety expert and former U.S. Army public health physician. He has published extensively on the subject.

The foundation share the symptoms of chronic quinoline encephalopathy, also known as neuropsychiatric quinism:

The term “quinism” may seem new, but the symptoms of poisoning by mefloquine (previously marketed as Lariam®), tafenoquine (marketed as Krintafel® and Arakoda™), chloroquine (marketed as Aralen®), and related quinoline drugs are all too familiar: Tinnitus. Dizziness. Vertigo. Paresthesias. Visual disturbances. Gastroesophageal and intestinal problems. Nightmares. Insomnia. Sleep apnea. Anxiety. Agoraphobia. Paranoia. Cognitive dysfunction. Depression. Personality change. Suicidal thoughts.

These symptoms are not “side effects,” they are symptoms of poisoning by a class of drug that is neurotoxic and that injures the brain and brainstem. This poisoning causes a disease, and this disease has a name: Chronic quinoline encephalopathy — also known as quinism.

In March they published this press release: The Quinism Foundation Warns of Dangers from Use of Antimalarial Quinolines Against COVID‑19. Here are some highlights:

  • A risk of sudden and lasting neuropsychiatric effects from the use of antimalarial quinolines against COVID‑19, the disease caused by the novel coronavirus
  • In susceptible individuals, these drugs act as idiosyncratic neurotoxicants, potentially causing irreversible brain and brainstem dysfunction, even when used at relatively low doses

What is concerning is lasting neuropsychiatric effects and the fact that even low doses can cause irreversible effects. The Foundation “has urged policy makers, physicians, and members of the public to be alert to such effects.”

Dr. Nevin states that “these are not safe drugs” and “While it may be tempting to attribute anxiety, depression, paranoia, or other mental health symptoms to the psychological effects of the COVID‑19 pandemic, these symptoms may be an early warning sign of idiosyncratic neurotoxicity, and must be taken seriously.” 

You can read the entire March 2020 press release here. It contains a link to U.S. Food and Drug Administration’s MedWatch program for reporting adverse effects.

Another press release published late July also cautions the use of tafenoquine against COVID-19 which The Qunism Foundation states “is a neurotoxic quinoline antimalarial drug with a similar adverse effect profile to mefloquine.”

New COVID-19 research on chloroquine and hydroxychloroquine

It’s encouraging to see that new research published on COVID-19 and these medications also highlights the possibility of neuropsychiatric side effects (even through the authors state it’s considered uncommon): Psychiatric Aspects of Chloroquine and Hydroxychloroquine Treatment in the Wake of COVID-19: Psychopharmacological Interactions and Neuropsychiatric Sequelae

…neuropsychiatric side effects are very uncommon but possible, and include a potentially prolonged phenomenon of “psychosis following chloroquine.” Hydroxychloroquine has less information available about its neuropsychiatric side effects than chloroquine, with psychosis literature limited to several case reports

Case reports on psychiatric symptoms induced by hydroxychloroquine

Here is one of these case reports: Psychiatric symptoms induced by hydroxychloroquine.  A 36-year-old woman was diagnosed with Systemic Lupus Erythematosus (SLE) and antiphospholipid syndrome, and was treated with prednisone 10 mg and hydroxychloroquine 200 mg every 24 hours. Her arthritis improved but

One month after initiation of treatment, the patient began with generalized anxiety, suicidal ideation and the appearance of auditory and kinaesthetic [tactile] hallucinations.

She had similar adverse effects 5 years later  when hydroxychloroquine (without prednisone) was prescribed following an outbreak of cutaneous SLE

A week later, the patient was admitted to the Department of Psychiatry because of suicidal ideation, self-harm and kinaesthetic and auditory hallucinations, which improved after withdrawal of hydroxychloroquine and treatment in a psychiatric setting. 

Since then, the patient has not been taking hydroxychloroquine and has had no further episodes of kinaesthetic [tactile] or auditory hallucinations.

Here are two other case reports: Hydroxychloroquine-induced acute psychosis in a systemic lupus erythematosus female and Hydroxychloraquine-induced acute psychotic disorder in a female patient with rheumatoid arthritis: a case report.

Risk factors for susceptibility

This review article from 2018, Neuropsychiatric clinical manifestations in elderly patients treated with hydroxychloroquine: A review article mentions that these adverse events can range from less severe nervousness to “actual psychosis and suicidal tendencies.” 

It also lists possible risk factors that may make certain individuals more susceptible:

co-exposure to interacting drugs, alcohol intake, familial history of psychiatric diseases, female gender, and the concomitant use of low-dose glucocorticoids [such as prednisone]. 

Malaria drug causes brain damage that mimics PTSD

I first learned of this neuropsychiatric connection a number of years ago when I read about the “case of a service member diagnosed with post-traumatic stress disorder but found instead to have brain damage caused by a malaria drug.” You can read about this here – Malaria drug causes brain damage that mimics PTSD: case study.

A few years ago I also blogged about the anti-malaria medication mefloquine and how it was known to contribute to neuropsychiatric symptoms in susceptible individuals: PTSD from 3 tours in Afghanistan: Can GABA help with the anxiety?

My concerns about long-term prophylactic use and lack of awareness

My concerns are long-term prophylactic use. There are a number of clinical trials planned or in progress for long-term use in healthcare workers. If they are stressed, anxious, depressed and exhausted because of the COVID-19 work they have been doing, they may incorrectly attribute some of their symptoms to all that rather than the medication side-effects. And if they do get COVID-19, they may confuse the neurological and psychiatric effects of COVID-19 with those of chloroquine or hydroxychloroquine.

What also concerns me is the lack of awareness. None of the advocates of this class of medications mentions quinism, the possible neuropsychiatric side-effects and long-term risks, or who may be susceptible.

I would be very happy if chloroquine or hydroxychloroquine is found to be a solution (or part of a solution) for COVID-19 – alone or in combination with zinc – for certain individuals.

But I believe we do need to be very aware about side-effects as serious as these. I’d also like to see education for healthcare providers and the consumer, as well as informed consent for the consumer.

Similar concerns with other medications

In the past I’ve written about similar concerns with other medications such as benzodiazepines, SSRIs and fluoroquinolone antibiotics:

Your feedback and questions so we can all learn

I encourage you to keep all this in mind as you navigate what you hear in the news, read on social media and/or read in the research on hydroxychloroquine.

Keep all this in mind too if you have future plans to travel to a malaria area for a vacation in the future (wouldn’t we love that – a trip!?).

Have you used chloroquine or hydroxychloroquine for COVID-19 and experienced psychiatric side-effects? Or know someone who has?

Have you used antimalarial medications in the past and experienced psychiatric side-effects? Was this a short-course or long-term prophylactic use?

Have you used these medications for lupus or rheumatoid arthritis with success and without psychiatric side-effects? Or have you experienced adverse effects and had to stop?

If you have had adverse psychiatric effects please share which medication, dosage and frequency? Also do you have any of the predisposing risk factors: alcohol intake at the time, history of psychiatric diseases (you or family members), are female, and were also prescribed low-dose glucocorticoids such as prednisone, and/or other medications (and which ones)?

Feel free to post your questions here too.

About Trudy Scott

Food Mood Expert Trudy Scott is a certified nutritionist on a mission to educate and empower anxious individuals worldwide about natural solutions for anxiety, stress and emotional eating.

Trudy is the author of The Antianxiety Food Solution: How the Foods You Eat Can Help You Calm Your Anxious Mind, Improve Your Mood and End Cravings and host of The Anxiety Summit now in its 6th season and called a “bouquet of hope.”

Trudy is passionate about sharing the powerful food mood connection because she experienced the results first-hand, finding complete resolution of her anxiety and panic attacks.

Reader Interactions

Comments

    • Barry says

      Trudy, this is a dreadful and poorly presented article, in that it lacks balance and perspective. Like all “drugs”, there are “side effects” associated with taking the. hydrochloroquine. (HCQ) There is every indication that HCQ + Zinc + an relevant antibiotic will CURE COVID-19. So… what are the chances that I will end up with “Quinism” if I take the “COVID CURE”??? Obviously, the “Benefit/Risk” ratio is extremely important. What dosages, and for what duration, are required to give the “Typical, Average Person” a significant case of “Quinism?

      Reply

    • Trudy Scott says

      Jean
      I added a case study about a 36-year-old woman was diagnosed with Systemic Lupus Erythematosus (SLE) and antiphospholipid syndrome, and was treated with prednisone 10 mg and hydroxychloroquine 200 mg every 24 hours. Her adverse symptoms started within a month and then she similar adverse effects 5 years later.

      Kindly share what you have seen or personally experienced about doses and side-effects.

      Reply

    • marlese R carroll says

      HI Trudy, Marlese from Bauman College. as with many medication there are always side effects – how ever early on very many esteemed Drs were using Hydroxycloriquin – with Zinc and other meds. It was quickly pulled from the shelves in UK and US and many people died. There is more then 1 narrative out there

      Reply

      • Trudy Scott says

        Marlese

        I agree with you – as with many medication there are always side effects. As I mentioned in the blog I’m concerned about the the lack of awareness about these neuropsychiatric side-effects in the medical community. None of the advocates of this class of medications mentions quinism, the possible long-term risks, or who may be susceptible.

        I’m sharing what I’ve found in the research in terms of neuropsychiatric side-effects so folks can be informed should they be prescribed this medication.

        I’m curious if you were aware of all this before reading this blog, the studies and the feedback from folks who have been harmed? And knowing all this would you be more cautious about using this medication for yourself and family members?

  2. Lori Germain says

    Hi Trudy, this is not news to me but still astonishing! I was on hydrcloriquine ( Plaqinel) for 5 yrs for Lupus, really messed me up but was convinced it was helping pain for autoimmunity!! Caused anger, anxiety and ultimately I came off but suffered nervous breakdown and had to have ECT treatment, the neurotoxicity is tremendous!! Also now know about Oxalates too!!! Hope this drug is not the so called CURE for COVID. Thanks for your work!!! Lori

    Reply

  3. Clover says

    One day I’ll write a book called All I Need to Know About Life I Learned from M*A*S*H. Ever since they started spouting about chloroquine for COVID-19, I’ve been thinking about the episode of M*A*S*H in which they took primaquine instead of chloroquine – except for the blacks whom they knew it affected – and it had the same effects for the Jews and other Mediterranean personnel. In the wake of the Black Lives Matter movement, I wonder why cholorquine has been recommended for blacks first? This reliance on dangerous drugs worries me sick!

    Reply

    • Trudy Scott says

      Clover
      I’m not familiar with the show/episode and looked it up because I’ve got a curious mind. Here is the link for other blog readers https://mash.fandom.com/wiki/The_Red/White_Blues_(TV_series_episode)

      Primaquine can’t be used in individuals with G6PD deficiency: “Both primaquine and tafenoquine are 8‐aminoquinoline antimalarial drugs that can cause severe haemolysis in individuals with glucose‐6‐phosphate dehydrogenase (G6PD) deficiency” https://www.mja.com.au/journal/2020/212/4/tafenoquine-radical-cure-and-prevention-malaria-importance-testing-g6pd

      Regarding G6PD and African American/Jewish groups – “In the United States the incidence [of G6PD deficiency] is much higher among the African-American population than in other sectors…..Another relatively common G6PD variant is found particularly among individuals of Sephardic Jewish or Sardinian descent. In addition, another somewhat common variant is present among some individuals of southern Chinese descent.” https://rarediseases.org/rare-diseases/glucose-6-phosphate-dehydrogenase-deficiency/

      This paper addresses G6PD, chloroquine (and it’s derivatives such as hydroxychloroquine) for COVID …”Taking into account that G6PD‐deficient subjects may be more susceptible to human coronavirus (a new predisposing factor?) and as such more plausible candidates to receive chloroquine or its analogs, physicians may need to be more careful when treating COVID‐19 patients with chloroquine and its derivatives, especially at large doses. Since experts predict that COVID‐19 will spread more widely in countries [and communities] with higher prevalence of G6PD deficiency, treatment decisions may merit serious consideration and need to be properly adapted.” https://onlinelibrary.wiley.com/doi/full/10.1111/jcmm.15312

      This is really outside my scope as a nutritionist but I like to try and connect the dots

      Reply

  4. Ron Greenstein says

    Is the publication of this article suggesting that people experiencing symptoms take the hcq/zinc+ cocktail as directed OR to avoid because it is too dangerous? I read about using quercetin instead of the hcq, Do you think that is a better option for treating the “infection,” immune response?

    Reply

  5. Donna says

    Thanks for the great article. I understand you say your concerns are long-term prophylactic use, which totally makes sense and I would agree. But I wonder how the numbers of people injured by hydroxychloroquine and its “relatives” would compare to numbers of people injured by vaccines, since the powers that be that discourage hydrozychloroquine use are waiting for and will be promoting the vaccine. Overall I wish more press was given to more natural things people can do, but when comparing drugs, I would be interested in this kind of comparison, especially when HQ is used only as an early therapy for those higher risk for problems.

    Reply

  6. Meg says

    I took 8 doses of mefloquine as a prophylactic against malaria and I paid for it for the next ten years of my life. It was very clear the drug was the cause. I wish I had known enough to seek legal action so I could have all damage it caused paid for. I spent ten years fighting my way out of the hole it put me in and ten more years and tens of thousands of dollars to repair myself as best I could.

    Reply

    • Trudy Scott says

      Meg

      Thanks for sharing and sorry to hear what you’ve been through. I do hope you’re doing better now.

      Would you be ok sharing what symptoms you experienced – right away and then the long-term effects? 20 years is a long time! I recently heard a similar story from a mountaineer who is still struggling to recover. I plan to share his story to create more awareness.

      As you’re probably aware there is more research on mefloquine/larium. As reported in this paper from 2011, the 27-year old male was also taking an antidepressant at the time: Severe neuropsychiatric reaction in a deployed military member after prophylactic mefloquine….”This case report involves a 27-year-old male active-duty US military service member who developed severe depression, psychotic hallucinations, and neuropsychological sequelae following the prophylactic use of the antimalarial medication mefloquine hydrochloride. The patient had a recent history of depression and was taking antidepressant medications at the time of his deployment to the Middle East. Psychiatrists and other health care providers should be aware of the possible neuropsychiatric side effects of mefloquine in deployed military personnel and should consider the use of other medications for malaria prophylaxis in those individuals who may be at increased risk for side effects.” https://pubmed.ncbi.nlm.nih.gov/22937403/

      Would you mind sharing what dose of mefloquine you were taking and how frequently – was it daily for 8 days? Do you have factors that may have increased your susceptibility: taking any other medications, alcohol intake, familial history of psychiatric diseases, and using low-dose glucocorticoids such as prednisone at the same time.

      Reply

  7. Kelly says

    Hi there. I’m just putting a comment up so that I can get notified about the other comments. I’m interested to hear of any stories. Thanks for sharing Trudy. I’ve been reading your book and have not long started taking GABA Calm at your recommendation. I’m much calmer even after only a few days but have been getting a slight vertigo or something. I was on 5mg escitalopram and ceased taking that only two days before starting GABA Calm so have been attributing it to a bit of a crossover and adjustment period. If you have anything to calm sensory issues as I suffer from the most extreme noise sensitivity (I have ASD and adhd plus generalised anxiety disorder) I would love to know what you prescribe for that because it is the only thing that it’s not helped so far. I have tryptophan and evening primrose Oil here plus 5HTP but have not commenced taking them yet due to coming off the ssri. I live in Australia and would happily pay any amount of money to have a Skype consult with you.
    * I think the best positive so far I’ve experienced with GABA calm is that I can consider things before reacting, better than I’ve ever been capable of before. And just within the first week of taking it.

    Reply

  9. Paul Wills says

    Really bad journalism. For decades Hydroxychloroquine has been safely used for malaria. Toxicity is in the dosage as others have noted. Trudy is grossly underqualified to even comment.
    Big Pharma wants it both ways having shills who crow, here is one of them:
    Dr. Nevin states that “these are not safe drugs” and “While it may be tempting to attribute anxiety, depression, paranoia, or other mental health symptoms to the psychological effects of the COVID‑19 pandemic, these symptoms may be an early warning sign of idiosyncratic neurotoxicity, and must be taken seriously.”

    Gross misinformation. Dozens of qualified first responders have used it safely! It works quickly by opening the Zn channels and is Dosage dependent.

    Reply

    • Susan Pierce Freeman says

      Was it necessary to be rude? “Grossly underqualified”?
      Could you not have expressed yourself in kinder terms?

      Reply

    • Francesca Ferrer says

      Hi Paul, your words are absolutelty meaningless to people who have experienced first hand awful side-effects of this drug (in my case for RA just by taking one single tablet, so toxicity can also be in just 1 tablet. Are we supposed to know beforehand how we are going to react to it , perhaps depending on the condition we take it for? I don´t think so ). Let us never forget that we are all different, so a drug will never be helpful, useful or safe for absolutely everybody. And by the way, quercetine seems to open the zinc channels too. It´s too bad this is not a well-known fact outside functional medicine.

      Reply

    • Trudy Scott says

      Paul
      I’m sharing what I’ve found in the research in terms of neuropsychiatric side-effects so folks can be informed should they be prescribed this medication.

      Kindly refer to the package insert for the drug if you don’t feel the research links I’ve provided are sufficient: “Psychiatric disorders: Affect/emotional lability, nervousness, irritability, nightmares, psychosis, suicidal behavior.” (https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/009768s037s045s047lbl.pdf)

      As I mentioned in the blog I’m concerned about the the lack of awareness about these neuropsychiatric side-effects in the medical community. None of the advocates of this class of medications mentions quinism, the possible long-term risks, or who may be susceptible.

      Feel free to share what your experience is with toxicity and dosage, and your qualifications.

      I appreciate differences of opinion and healthy discussion as long as it’s respectful so kindly refrain from posting insults.

      Reply

    • Jane says

      Wow Paul, that’s quite an attack on Trudy! I have been reading this blog for over 7yrs and find Trudy’s articles to be scientific, unbiased, and very balanced. Speaking of being unqualified to even comment is Donald Trump who promoted taking hydroxychloroquine prophylactically!! Talk about crazy, unqualified and irresponsible.

      Reply

      • Trudy Scott says

        Jane
        Thanks for your support here and for being a 7 year member of my community and blog-reader! 🙂

    • Virginia Frizzle says

      It would be nice to hear from people who took it as the Front-line Dr.s suggest. Which is a pretty low dose. 200 mg 2x a day for a couple days, until symptoms subsided. With the other supplements to support it. Then if continue only recommended to take one 200 mg one time a week. If someone was taking it everyday as a preventive I imagine there could be problems. My husband, retired from the Navy took it once a week when in the S. Pacific to prevent malaria. They did NOT take it everyday.

      Reply

  10. SB says

    I have seen very little research on these side effects and would like to see the journal articles. I appreciate this information and want to take it all in without the discredited media info.
    When weighing death versus taking HCQ, there is no comparison and i do not agree that this drug causes the kind of harrm that the media hype wants us to believe based on the research i have seen.
    However, whenever there is a pharmaceutical involved, there is going to be side effects. I would like to see the studies on this rather then hear about it in an article. “ Trust but verify”My doc Is a John Hopkins trained Doctor who prescribes this regularly for her RA and a number of her other cronically ill patients and has good reports.

    Reply

    • Trudy Scott says

      SB
      Kindly click on the links to the research articles I provide in the blog. There are some additional study links in the comments too.

      I do hope your doctor is aware of the neuropsychiatric side-effects, the possible long-term risks, and who may be susceptible.

      Reply

  11. Grace says

    I agree with Donna. The people who are eyeing one cure for all solution to the covid crisis, that is a vaccine is censoring anyone who proposes alternative solutions. The death of freedom to speak and choose is worst than death by covid.

    Reply

  12. Bonnie McNair says

    Two of the more natural things we can use to fight serious viruses are fresh garlic and ginger. These may be thought to be so common place and benign that they could never defeat such a powerhouse as co-vid, but they can.
    When I came down with probable co-vid a few months back, I prayed for help, cut out all meat, dairy, starches, fruit. I sipped hot vegetable soup, hot tea and water only for 2-3 days. I took chopped fresh garlic and ginger 2-3 x’s p/d and kept myself well covered from head to toe. By the end of the 3rd day, the worst was over and I was on the road to recovery. Now I f I start feeling sick or am coughing, I reach for a *very* small piece of home dried ginger I keep in the refrigerator and some fresh chopped garlic that I swallow with water. Both are much too hot to chew but can easily be mixed in with food, swallowed with water, or made into a tea (ginger) for children. I feel better within minutes.
    These recommendations have helped others who were diagnosed co-vid positive, or who had all the symptoms. Maybe they can help you or someone you know too! 🙂
    PS I scrape skin off fresh ginger “logs”,
    slice long sides into thin slivers, turn, slice the other sides until I basically have ginger toothpicks. I spread them on a cookie sheet covered with parchment paper, then bake at 170 degrees for an hour, more or less, until they’re visibly dry. It helps to prop the oven door open a few inches with a metal spatula while they’re drying to keep the temperature lower. It’s nice to have it in dried form so I can take it with me without worry of it spoiling.

    Reply

    • Carol says

      I regularly make organic ginger lemon tea for my nausea and tummy troubles, then dry the strained ginger in the hot sun under parchment paper. It is my wonderful ‘drug’ of choice. I also love fresh garlic, and always try to find a way to eat it without offending any guests, and also avoid burning my throat and stomach. Eating it with a tsp of quality olive oil is much easier on the system. I tested negative for Covid-19 on July 23, 2020, but wonder if I had it over the winter… I am allergic to quinine (eg tonic water) and will refuse to take any fluoroquinolone or any quinoline based drug. Already suffered too many side effects from pharma drugs, and antivirals quickly severely hamper my renal function, and SSRI usage has also been problematic in the past. It was only on the 3rd attempt to wean off escitalopram that I was successful. Pure poison for me, and at its best, only kept me sedated and sleeping 8 hours per night, and I am too young to sleep my life away.

      Reply

  13. Fairlie says

    This article has me wondering what dosage was used, how often the drug was taken, if it was used with zinc and an anti-biotic. Are people with side effects taking other meds? Low doses used for a short period are proven to be effective for Covid 19. I think that the benefits of short term use would far outway possible side effects for Covid patients. We aren’t hearing about side effects from the Drs. who have spoken publically about it’s effectiveness. Dr. Immanuel with Front Line Doctors said that Hydroxychloroquine is the safest in the ‘family’ of related drugs. I haven’t read the 65 positive studies that were done worldwide. There are many ways to prevent Viral diseases besides using Hydroxychloroquine as a prophylactic. Several natural treatments are promising, including quercetin. People should be encouraged and supported in taking supplements, like vitamin C, D, zinc, magnesium, etc. and have healthier diets and lifestyles.

    Reply

    • Trudy Scott says

      Paul
      Thank you for sharing this very compelling article by Dr. Harvey A. Risch. I look forward to reading the research he mentions. He does mention the risks of cardiac arrhythmia. I wasn’t aware of this about cardiac arrhythmias… “adverse events were generated from tens of millions of patient uses of hydroxychloroquine for long periods of time, often for the chronic treatment of lupus or rheumatoid arthritis” and will look into this.

      It’s unfortunate he doesn’t mention the neuropsychiatric side-effects (for susceptible individuals) that I share in this blog.

      Reply

  16. Anonymous says

    There is unfortunate censorship with application and trials with this drug. Most of the retracted studies showed doses used at extremely high dosages that are known to be toxic (even herbs that are overdosed have effects) and were not used correctly at the start of the disease. All the links to Dr. Nevin’s research are on mefloquine, which neuropscyhiatric disorders is a known side effect, this has a bit of different mechanism. As we know, when you change one thing with a substance, or isolate another active constituent, it can produce a very different effect in the body. Wikipedia has some decent, though deceptive, explanations on both. HCQ is extremely toxic in high doses, but has been used for years safely for lupus and other immune disorders, and in proper dosages, malaria. Not to say that it is the best choice all the time. However, doctors have been saving lives with it. Balance. Not a first choice, but to the right person for the right dose, can be helpful.

    Reply

    • Trudy Scott says

      Cynthia

      I’m not aware of a genetic link for the neuropsychiatric side-effects but added a link to a paper that identifies who may be more susceptible. I am curious now if there may be mitochondrial damage like there is with fluroquinolone antibiotics.

      Reply

  18. Pam P says

    I took hydroxychloroquine for travel to East Africa many years ago….I experienced a few episodes of delusions while on it. The one that was most disturbing was I was lying in bed looking up at the ceiling and it was full of spiders….and then they started dropping from the ceiling on to me…I was rolling from side to side to avoid them all the while sort of knowing that I was awake and it was not a dream. I didn’t at first relate either experience to the meds. My sister in law who is a nurse practitioner saw the bottle in my bathroom while visiting and told me she that it was known to cause these kinds of experiences.

    Reply

    • Fairlie says

      Yikes! What an awful experience for you! Was it a low or higher dose that you took or was it on-going prophylactic dosing? Did you get over the side effects after stopping it? It seems that for Covid recovery, just a few low doses are required with zinc and an anti-biotic. I’m super sensitive to meds – had many issues from a month of cortico-steroid eye drops after cataract surgery! ‘Haven’t heard of other people having the serious side-effects I had with eye drops. I work hard to stay healthy and take good quality supplements – for the many benefits, including disease prevention. I hope that things can be done to mitigate side effects so this and other meds (and/or various supplements) can have more widespread use to help people prevent or recover quickly from Covid! Thanks for sharing your experience!

      Reply

    • Trudy Scott says

      Pam
      Yikes thanks for sharing – scary! Glad to hear your sister in law recognized this as being medication-related.

      Would you mind sharing what dose of hydroxychloroquine you were taking and how frequently, and for what duration? Do you have and other of factors that may increase susceptibility: taking any other medications, alcohol intake, familial history of psychiatric diseases, and using low-dose glucocorticoids such as prednisone at the same time.

      Reply

  19. Arthur Williams says

    The use of hydroxychloroquine for covid is because it is an ionophore. This helps zinc get into the cells. An alternative one can use is quercetin.

    Reply

  20. Luiza says

    I tried hydroxycloroquine for RA (200mg per day, which is the minimum dosage) and started having neuropsychiatric side effects within 3 days (mood changes from aggressive irritability to severe anxiety, extremely vivid nightmares and very disturbed sleep with sudden wake ups in acute panic). The only other medications I was taking at the time was asthma medication (low dose), and some OTC stuff for allergies. My doctor suggested taking it every second day, but things got worse after 2 more pills, and I was asked to stop right away, as these are known side effects of this drug. What nobody seems to talk about is that unlike other drugs, hydroxycloroquine is in the bloodstream for 3 MONTHS. And yes, things only started improving for me at the 2 and a half month mark, with me getting my sleep back and feeling sane again at the 3 months mark, and had the worst RA flare ever during this time on top of it all.

    Here is a paper collating multiple articles about the neuropsychiatric side effects of hydroxycloroquine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7305495/ . If you do a search for “hydroxychloroquine psychosis” in Pubmed, you will see case studies; one person had a psychotic breakdown after only 10 days of it. Incidentally, hydroxychloroquine is how I found Trudy, searching for something that would help with the night panicS. GABA is the only thing I tried that took the edge off and allowed me to get some sleep.

    Reply

    • Trudy Scott says

      Luiza
      Thanks for sharing your experience with this medication. I’m sorry you went through this and I do hope you’re doing better now especially with the GABA support for the night panics and disturbed sleep. I’m so glad you found me and learned about GABA! Are you saying it helped with recovery from the hydroxychloroquine adverse effects?

      You are correct about how long the drug is in the system. It’s actually may even be longer than 3 months. The drug insert (https://www.accessdata.fda.gov/drugsatfda_docs/label/2017/009768s037s045s047lbl.pdf) “Following a single 200 mg oral dose of PLAQUENIL to healthy males, the mean peak blood concentration of hydroxychloroquine was 129.6 ng/mL, reached in 3.26 hours with a half-life of 537 hours (22.4 days). In the same study, the plasma peak concentration was 50.3 ng/mL reached in 3.74 hours with a half-life of 2963 hours (123.5 days).” Half-life is the length of time required for the drug to decrease to half of its starting dose in the body. They don’t mention females.

      Also since RA is an autoimmune condition, I would discuss dietary approaches with your doctor – and review the work of Dr. Tom O’Bryan, Dr. Amy Myers and Dr. Izabella Wentz. They all have books – not specifically about lupus but autoimmunity and Hashimotos thyroiditis (another autoimmune condition).

      Here are some resources
      The Autoimmune Fix by Dr. Tom O’Bryan: gluteomorphins, casomorphins and withdrawal https://www.everywomanover29.com/blog/autoimmune-fix-tom-obryan-gluteomorphins-casomorphins-withdrawal/
      The Autoimmune Solution Cookbook by Amy Myers MD https://www.everywomanover29.com/blog/the-autoimmune-solution-cookbook-by-amy-myers-md/
      Hashimoto’s Protocol by Dr. Izabella Wentz https://www.everywomanover29.com/blog/hashimotos-protocol-izabella-wentz/
      Hashimoto’s Food Pharmacology, a new recipe book by Dr. Izabella Wentz https://www.everywomanover29.com/blog/hashimotos-food-pharmacology-a-new-recipe-book-by-dr-izabella-wentz/

      Thanks for sharing that very helpful paper. I’ll be adding it to the blog.

      Reply

      • Luiza says

        I do not know to what extent GABA helped my recovery, but it must have, because it allowed me to sleep when things were going downhill fast. I could still tell the difference when the hydroxycloroquine was mostly gone out of my body, as my mental balance and my desire to sleep improved considerably, but GABA was an absolute sanity saver in the meantime. I tried GABA Calm first, but even a bit of tyrosine early during the day was keeping me awake at night (distinctly calmer, but still not sleeping). Then I tried GABA Relaxer, which did get me to sleep (yay) but was making me groggy in the morning , even with just one of the two recommended pills (the taurine?). Then I moved to Thorne pharmaGABA 100, which hit the sweet spot and I’m still taking it. I’m doing significantly better now, although my brain fatigues so much easier than before, which is frustrating.

        Ugh for the plasma half life, that does explain a few things. I wonder how many people reporting extended Covid symptoms like depression or fatigue have taken hydroxychloroquine or other medications for Covid?

        Thank you for the listed resources; I have seen some of them before and I will look into the rest. I have been on the AIP diet for close to three years now and after the first year my CRP was in the normal range (a significant drop) despite ever increasing RA antibodies, so I’m definitely a believer in dietary approaches. Thank you very much for all your work!

      • Trudy Scott says

        Luiza
        So pleased to hear you’re doing significantly better and figured out the right form/combination of GABA for your needs – your sweet spot!

        I have been wondering the same about some of the long-hauler COVID folks who may have used hydroxycholoroquine when it was available. I just had a FB chat with a nurse who shared works in a hospital that did initially use hydroxycholoroquine. She shared this: “I have had many patients reporting depression and anxiety but I am not sure if it’s medication related or more related to the challenges of prolonged recovery , high fatigue levels and isolation or a combination of all of these factors.”

        Re these resources for RA – be aware it’s more than the AIP diet. Diet is a fabulous foundation so good job but they write about toxins, liver function, parasites and much more.

  21. Damien says

    I suffered many symptoms for over a decade from taking 3 tablets of Mefloquine. While many of the acute symptoms have slowly resolved, I still have a few debilitating symptoms 15 years on. Please take care https://quinism.org/

    Reply

    • Trudy Scott says

      Damien

      Thanks for sharing and sorry to hear what you’ve been through. I do hope you’re doing better now.

      Would you be ok sharing what acute symptoms you experienced and the long-term effects? 15 years is a long time! Meg posted a similar comment above. I recently heard a similar story from a mountaineer who is still struggling to recover. I plan to share his story to create more awareness.

      As you’re probably aware there is more research on mefloquine/larium. As reported in this paper from 2011, the 27-year old male was also taking an antidepressant at the time: Severe neuropsychiatric reaction in a deployed military member after prophylactic mefloquine….”This case report involves a 27-year-old male active-duty US military service member who developed severe depression, psychotic hallucinations, and neuropsychological sequelae following the prophylactic use of the antimalarial medication mefloquine hydrochloride. The patient had a recent history of depression and was taking antidepressant medications at the time of his deployment to the Middle East. Psychiatrists and other health care providers should be aware of the possible neuropsychiatric side effects of mefloquine in deployed military personnel and should consider the use of other medications for malaria prophylaxis in those individuals who may be at increased risk for side effects.” https://pubmed.ncbi.nlm.nih.gov/22937403/

      Would you mind sharing what dose of mefloquine you were taking and how frequently – was it daily for 3 days? Do you have factors that may have increased your susceptibility: taking any other medications, alcohol intake, familial history of psychiatric diseases, and using low-dose glucocorticoids such as prednisone at the same time?

      And thanks for sharing this link – The Quinism Foundation is where the press releases are from. Dr. Nevin has been very active creating awareness and publishing research since 2008 and we appreciate him for this.

      Reply

  22. Lorena says

    I have taken hydroxychloroquine off and on for RA for many years, usually at 200 mg daily. I have many risk factors as a female with family history of psychotic illnesses, also taking low-dose prednisone as well as many other medications. I have never noticed any problems with this drug. It has been much safer for me than any of the other meds I’ve tried for RA. My doctor did discuss the risks with me, but for me, this drug has worked out well.

    Reply

  23. Francesca Ferrer says

    Hi Trudy, thanks for giving your balanced and knowledgeable opinion on these drugs. As a reumathoid arthritis patient, in 2016 I took 1 tablet of hydroxychloroquine (plaquenil) on a reumatologist´s prescription. I wans´t taking anything else. The same day my right hand became extraordinarily sensitive and painful. Just holding a kitchen cloth caused me an excruciating pain. I couldn´t do absolutely anything with my right hand for one day. Not even opening a door. I decided to stop inmediately taking this medicine, and fortunately this all went away afterwards. Looking with hindsight, I shoud have known better. It took me some time to forgive myself for having succumbed to taking Big Pharma´s poisons. But I want to finish on a positive note, and I want everybody who reads this to know the following: just by changing my diet (eliminating nightshades and wheat) and doing lifestyle interventions my RA is absolutely manageable. I don´t believe there is a single drug that can beat this.

    Reply

  25. Gayle Sullivan says

    I am living in Costa Rica. It is a poor country but provides medical care for all residents. I read early on how doctors here had video conferenced with doctors in China about using hydroxychloroquine with the novel virus and that they were having success using it when the virus was first detected. It is a very inexpensive drug so fit the bill for a poor country and it was used for a short period of time. It was not reported if it was used with zinc or an antibiotic but since it is a zinc ionophore I imagine that was the reason for the hydroxychloroquine. In the last month the number of cases has increased substantially. This is a country of a population of about 5 million. As of yesterday, 7/31/2020 the number of cases was 17,820 with the number of deaths at 150, yes, 150. They must be doing something right in the treatment. I would like to see studies done on the effectiveness of quercetin as the zinc ionophore so there would be no worries about possible psychological effects.

    Reply

    • Trudy Scott says

      Gayle
      Are you saying Costa Rica uses hydroxychloroquine and you suspect this could be a reason for a lower death rate? I’m confused because you say in the last month the number of cases has increased substantially. I’d be interested to see something official about this for Costa Rica and other countries using antimalarials for COVID-19 now and in 6-12 months too.

      If it is being used I would hope there is awareness about the neuropsychiatric side-effects, the possible long-term risks, and who may be susceptible.

      Reply

  26. Margaret says

    About 7 years ago I was prescribed plaque nil for RA. I took 200 mg daily and for a few weeks things seemed fine, although it didn’t seem to help the pain much. About 5-6 weeks in I began noticing my tinnitus increasing. (I’ve had it since childhood and I’m pretty good at ignoring it.) it quickly got to the point that I couldn’t understand what people were saying. I immediately stopped and my hearing improved. Although I didn’t feel it was helping my pain much, cutting it cold turkey caused quite a flare. The doctor was wrong anyway – I have scleroderma. And as others have mentioned changing my diet was the best thing I could do. The side effects l the drugs are usually worse than the supposed pain relief.

    Reply

    • Trudy Scott says

      Margaret
      Thanks for sharing your experience about hydroxychloroquine/Plaquenil and tinnitis – glad to hear it improved once you stopped. Do you have and other of factors that may increase susceptibility: taking any other medications, alcohol intake, familial history of psychiatric diseases, and using low-dose glucocorticoids such as prednisone at the same time?

      Also so glad to hear changing your diet was the best thing you could do!

      Reply

      • Margaret says

        The only meds I take on a regular basis are nsaids and asthma meds. I find my body doesn’t like changes in the barometric pressure and there are days I can’t function because of the pain. I developed an allergy to alcohol after the birth of my third child and avoid it like the plague.(histamine issues) I’ve taken Antidepressants in the past due to PTSD but reacted badly to them all. I occasionally take a very small amount of Xanax (0.25 mg cut in half) when the anxiety gets bad, but a 30 day prescription las start over 6 months. I’m diabetic and avoid taking prednisone, but have taken it in the past due to bronchitis or pneumonia. I don’t know why I reacted badly to the plaquenil, except that I seem to react badly to pretty much any drug.

  27. Francesca Ferrer says

    I´d like to understand what´s going on in the world. It´s such a chaos and confusion all around. Conventional medicine being against a drug (hydroxychloroquine), for a change. Naturopathic doctors such as Dr Mercola strongly defending a drug (hydroxychloroquine), of all things. If it is really true it´s saving lives (after all, one doesn´t know what or whom to believe any more), what a shame that there should be such a strong denial about its healing properties. On the meantime, the only people who defend this drug in the political sphere are halfwits as the Trumps and Bolsonaro. What are the chances that this drug is ever going to be taken seriously for treating Covid?

    Reply

    • Trudy Scott says

      Francesa
      Unfortunately much of this has become political (as you’ve shared) instead of being in the hands of medical professionals and researchers. I do hope it all moves back to the medical professionals and researchers.

      Reply

    • Paul Wills says

      Francesca, many share this confusion, and there is a reason for that. There is a deliberate massive attempt to confuse and obfuscate. That is the point.
      Mercola is objective and has contributed more to natural health than the next dozen people anyone could mention, and he admits his mis-steps.
      That there are now hundreds of censored doctors worldwide who have spoken up on the benefits of Hydroxychloroquine for the Covid syndrome is not in question. They do not have a dog in this race except to help others. This discussion is about that issue, that is why it is of interest.
      The neurological implications are mostly for long term usage though as with any med their are exceptions. It is ridiculous in the middle of this debacle to consider it otherwise.

      Reply

  28. M says

    Dr Deitrich Klinghardt used this drug like four years in his thesis w no side effects. This drug treatment he said could have saved lives n the foul studies done by Faici n Bill n Melinda Gates foundation were junk. He said it’s a beautiful little treatment for Covid along w zinc n abx. Yes there r beautiful natural solutions that conventional medicine n hospitals won’t touch so the hydroxy works. Henry Ford Foundation just released new I do as well. Crime against humanity this drug wasn’t at least tried and people died. This drug had been around forever

    Reply

    • Trudy Scott says

      M
      I’m very curious what Dr. Klinghardt’s commentary is about the neuropsychiatric side-effects and possible long-term consequences. As you can see from the press releases, studies listed, the drug insert and many of the feedback in the comments, this medication can be a serious issue for susceptible individuals.

      Reply

  29. Paul Wills says

    This thread really has gone in every possible direction.
    The only reason anyone is interested is simply because of its off label advocacy in the treatment of the syndrome alleged to be caused by Covid 19. That it has been documented to cause neuro psychiatric events usually for long term dosage is only of casual interest.
    People have been ventilated off the planet and first responders have admitted they do not know what they are treating! But that it resembles altitude sickness as hypoxia is nearly universal.
    A huge percentage of those treated with Hydroxychloroquine have had dramatic recoveries commonly within hours, from the off label use of this drug heralded as safe for malaria which may or may not be accurate.
    Any thinking person realizes that those without co-morbid conditions fare better, most develop no symptom at all. That is not the issue and takes nothing away from sound nutrition. Whether quercitin in effective enough to save a person from ventilation is unknown as useful as it may otherwise be.
    It is clear that this political football has come between people who might otherwise be reasonable. It is also clear that it was improperly framed in the wake of the current crisis…

    Reply

  30. Paul Wills says

    I could not agree more about the lack of awareness.
    That is exactly why one might chime in.
    https://blogs.mercola.com/sites/vitalvotes/archive/2020/07/31/doctors-file-for-injunction-to-release-hydroxychloroquine-ohio-pharm-board-walks-back-ban.aspx

    Ohio medical board walks back ban, which is unprecedented (the ban), and a total over reach by mandarin governance regarding Hydroxycholorquine after hundreds of doctors, first responders, and even nurses have seen first hand its rather immediate effectiveness for the hypoxic syndrome alleged to be caused by Covid 19.

    Reply

  31. Karen Carlson says

    As a nurse, I have also been researching the HCQ combo protocol for COVID-19. Trudy asked me to look into the research she has found on the side effects. The short term use as the treatment for COVID is not the concern. It works within 48 hours to turn around COVID-19.
    It is the longer prophylactic use that would reveal possible side effects listed. She is asking those that have used it to please share their personal experiences in that area.

    Reply

    • Paul Wills says

      Let us not skirt the issue. The discussion is ONLY of interest due to HCQ advocacy treating the symptoms of Covid, period. That the drug has other side effects is not different from any drug. That they are sometime severe is uncommon. It has been PROVEN to be useful for the syndrome that is called Covid 19, with all the fake news, fake dx, fake lab tests, that are part and parcel of the debacle.

      Reply

  32. Pam Holloway, RN, MS says

    I’ve just completed a deep dive on peer-reviewed medical research on interventions for pandemic viruses that is being published by ACIM (Academy for Comprehensive Integrative Medicine) with a group of physicians. The focus was on prevention and early stage intervention methodologies that are available without having to rely on Hydroxychloriquine or other pharmaceutical interventions. Quercetin and other Zinc Ionophores were included. The one factor we came across based upon a study that Chris Masterjohn, PhD located was that it may be difficult to get Quercetin up to a high enough serum level to be effective. That said, I believe the key component is prevention & early intervention at which point it lowers the burden of high serum levels due to the multi-faceted support of prevention through nutraceutical as well as environmental considerations (including limiting EMF exposure). At the end of the day, the old adage, “An ounce of prevention is worth a pound of cure” proved to be sage wisdom. Article will be published soon at this website https://www.acimresearch.org/procacimres

    Thank-you for the excellent dialogue and the good discussion. I’ve seen Hydroxychloriquine be very effective, I’ve also seen one case where it induced a neuropsychiatric event when someone took an extremely high dose for a short period of time. As with any medication, there is a need to be aware that there can always be side-effects and to look carefully at the cost/benefit analysis based upon each individual’s situation at that point in time.

    Reply

  33. Fern Strickler says

    I started Plaquenil 200 mg BID Jan 2020 for knee pain inflammation and pressure in my head and ear. Within 2 weeks the head and ear pressure improved. The knee pain gradually decreased to where I could tolerate walking a mile.
    However, my normal insomnia level of sleeping about 4 hours each night went to sleeping 2 – 0 hours. So I don’t know if the depression, Stomach pain, disoriented feeling, dizziness, headaches, increased tinnitus, vision disturbances, extreme fatigue, and feeling as if I am losing my mind are from the drug or lack of sleep. But I quit the drug a week ago, and am getting maybe an hour or so more sleep. Prescribing DC with adjunct NP say Plaqenil reaction is extremely unlikely to be cause of my distress, but I am grasping at straws.
    And no, I have not contracted COVID-19

    Reply

    • Trudy Scott says

      Fern
      It’s challenging to know unless the Plaquenil is stopped

      Apologies for the delay in your comment approval and my response. We had a computer glitch where a large number of comments were hidden from view in a spam folder. It mostly affected new folks who were commenting for the first time but it’s hopefully resolved now.

      Reply

  34. Julie says

    I’ve been following your column for several years now; I’m a big fan.

    Thank you for your info on Hydroxychloroquine, etc. I’m interested because I have been on Plaquenil since 2012 (Sjogren’s), 200 mg, one tablet twice a day. When Hydroxychloroquine broke into the news, I couldn’t get my refill. The pharmacist told me they had received over 3,000 prescriptions…from DOCTORS and DENTISTS for themselves and family members. Isn’t that something?!? Crazy.

    I no longer take Clonazepam because of your research, but I don’t know about Plaquenil (Hydroxychlor), Trudy, lol. I was virtually bedridden when I started this drug. If I’ve had side effects, I’ve never noticed. If I miss a dose, history tells me a flare is inevitable, so I’m sure you can understand my hesitation.

    Thank you for all you do. Great job encouraging others to be polite with their comments. You do an outstanding job in informing the public – keep up the good work!

    Reply

  35. Lou Anne says

    There are two uses for HCQ, treatment after symptoms/test positive AND prophylaxis. Notice that the prophylaxis is two doses per month. And the treatment is total 20 doses.
    Treatment: The dose is 400 mg on Day one, and 200 mg daily for 7 – 10 days. Rx of 24 tabs of 200 mg.
    The prophylaxis dose is 200 mg every 2 weeks. Remember to take it with zinc 25 to 50 mg a day, and Vitamin D3 5000 IU daily.

    I think your article is very interesting but comparing daily doses over several months is not the same as 20 doses or two doses per month.

    The prophylaxis does through GoodRx coupon is $20.41 and treatment is $11.xx

    Reply

  36. Natalie says

    I had psychiatric side effects from Plaquenil last year. I was misdiagnosed with an autoimmune condition and took it at low dose for three weeks. It gave me severe anxiety and depression and left me suicidal for three months, until it washed out of my system. It was scary. The doctor really glossed over the side effects and completely neglected to mention the psychiatric component, likely because he himself had no idea. I’m prone to them, so I’m not supposed to take anything that can trigger them. I almost died. I still have trouble sleeping, ringing in the ears and anxiety heart palpitations a year later.

    Reply

    • Trudy Scott says

      Natalie
      Thanks for adding to the discussion and sharing your story. I’m sorry you went through this and so unfortunate that the doctor glossed over the side effects and did not warn you about the psychiatric effects.

      I would consider nutritional support and discuss GABA and tryptophan with your functional medicine practitioner. If you are new to the amino acids (and other anxiety nutrition solutions like gluten/sugar/caffeine removal, blood sugar control, gut health, pyroluria etc) my book “The Antianxiety Food Solution” is a great place to start. More here https://www.everywomanover29.com/store/aafsbook.html

      Reply

  37. Sue says

    I took Plaquenil for a couple of months a few years ago. The ringing in my ears got so bad I thought I was going to be functionally deaf, so I had to quit cold turkey. I’ve had tinnitus since I was a kid, so I’m used to ringing in my ears, but I think when it gets worse that it’s a form of allergy. It gets worse with peanuts and flax seeds/oil.

    Reply

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