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Top Tips on Taking Hydroxychloroquine for Lupus [Ultimate Guide AUG 2023]

LATEST UPDATE: A nicely done study by Melles RB et al, FEB 2023, Hydroxychloroquine Dose and Risk for Incident Retinopathy A Cohort Study, resulted in this nice quote: “our findings suggest that, under current screening recommendations and dosing patterns, loss of visual acuity from hydroxychloroquine retinopathy should be rare

Update (DEC 2022): Harvard study showing that using hydroxychloroquine doses of 5mg/kg/day or less (as recommended by the American Academy of Ophthalmology) are associated with high risk of flares compared to using higher doses. Click here to jump to that section of the page.

A simpler desensitization technique for hypersensitivity rashes is linked to (DEC 2022)

Addition in August 2023: Do not smoke cigarettes. Discussed below


The benefits of taking hydroxychloroquine for lupus

Should you take hydroxychloroquine with food?

What should you do if you miss doses of hydroxychloroquine?

What should I do if I get side effects from hydroxychloroquine?

If I get an allergic rash from hydroxychloroquine, can I still take it?

What can I do if hydroxychloroquine is too expensive for me?

What is the best dose of hydroxychloroquine to take?

How can I prevent eye problems from hydroxychloroquine?

What eye tests should I get while taking hydroxychloroquine?

Eye tests recommended for Asians

How often should I get eye exams for hydroxychloroquine?

What if my eye doctor tells me that my eye tests are abnormal and that I should stop my hydroxychloroquine?

What if I am allergic to or cannot tolerate hydroxychloroquine? Is there an alternative to hydroxychloroquine for lupus?

Brand name Plaquenil is more tolerable and works better than generics for some people

Never smoke when taking hydroxychloroquine

Smoking cigarettes decreases the effectiveness of antimalarial drugs like hydroxychloroquine. If you smoke, you are keeping the most important drug for treating lupus from working properly. This puts you at high risk for needing stronger drugs that suppress the immune system (like steroids). If you require immunosuppressant drugs, then smoking also greatly increases your risk for life-threatening infections, especially pneumonia.

Smoking cigarettes as a lupus patient is equivalent to having an early death wish.

The benefits of taking hydroxychloroquine for lupus

As recommended by “The Lupus Secrets,” taking hydroxychloroquine (Plaquenil) for lupus is incredibly important. In addition to being the only drug proven to prolong survival in lupus patients, the benefits of hydroxychloroquine are many:

To understand why antimalarial drugs help lupus patients, see my previous blog on
How does hydroxychloroquine work for lupus?

Do I have to take hydroxychloroquine with food?

No. You do not have to take hydroxychloroquine with food.

Many patients have lupus flares due to missing doses of hydroxychloroquine due to stickers on the bottle saying, “take with food.” However, this does not apply to most people.

The main reason to take hydroxychloroquine with food is if it bothers your stomach. In some people, hydroxychloroquine causes stomach upset, nausea, bloating, heartburn, or loose stools. If any of these happen, then take it along with food or milk.

Taking smaller amounts at a time (as discussed below) is also helpful.

Also, taking something like bismuth subsalicylate (like Pepto Bismol) with your hydroxychloroquine can reduce gastrointestinal issues.

What should I do if you miss doses of hydroxychloroquine?

Missing doses of hydroxychloroquine is a common cause of lupus flares. However, there are things you can do to decrease the chances of missed doses:

If you miss a dose of hydroxychloroquine, you can make up for the missed dose on the next day (if you tolerate doing this without stomach upset or other problems from taking a higher amount). Again, ask your doctor first before you do this. However, this does very well for most people.

For example, if you take two tablets at the same time once daily and realize you forgot your dose yesterday, you can make up for this missed dose by doubling the amount today. Take two tablets in the morning and two in the evening on the day after you forgot your dose. This is possible because hydroxychloroquine has a long “half-life.”

This is one of the most important things you can learn to do with lupus. Having the correct hydroxychloroquine drug level (discussed below) by not missing doses is important for decreasing the risk of lupus flares.

How to keep from missing hydroxychloroquine doses

There are other things you can do to decrease the chances of missed doses:

  • Take all the pills at once daily. When doctors put “take two tablets daily” on the medication bottle label, some people interpret that as taking one at a time twice daily. However, it means to take both at the same time once a day. Taking medications all simultaneously once a day makes it much easier not to miss doses of medications. Double-check with your doctor what medicines should not be taken with other drugs.
  • Use a medicine dosing and packaging pharmacy (like Pill Pack). They prepackage your medicines by date and time. For example, if you take five different pills in the morning and just two at night, they are packaged that way instead of the usual method (all of the same drug in the same bottle). This makes it easy. You do not have to arrange the pills yourself, and it is easy to notice if you are late or forgot to take a dose of medication.
  • Hydroxychloroquine also comes in 100 mg, 300 mg, and 400 mg tablets in addition to the usual 200 mg tablets.
    • These could help with compliance and tolerability.
    • For example, if you take 1 ½ of the 200 mg tablets daily, taking one 300 mg tablet a day may be better if you sometimes forget to cut up the pills.
    • You can also do this if you cannot tolerate the cut-up pills due to their bad taste.
    • If you do not tolerate ½ of a 200 mg tablet at a time (100 mg), you may want to try taking ½ of the 100 mg tablet at a time. If someone is extremely sensitive to hydroxychloroquine, taking ½ of a 100 mg tablet three times daily may be as much as they can tolerate. This is only 150 mg daily, but it is better than not taking it at all.

What should I do if I get side effects from hydroxychloroquine?

Most side effects from hydroxychloroquine are what we consider “nuisance-type” and not severe reactions. They are also typically “dose-related,” meaning that they are more likely to occur at higher doses and less likely on lower doses.

I will address rashes and eye problems in a separate section below.

Nuisance-type side effects include nausea, diarrhea, stomach upset, feeling wired, anxious, having bad dreams, insomnia, dizziness, headaches, and others.

How to take hydroxychloroquine without side effects

If these occur, I recommend that my patients do the following (ask your doctor first, but the vast majority will agree with this approach):

  • Stop your hydroxychloroquine until the side effect disappears and you feel back to your normal self.
  • Then start again at a very low dose, such as ½ tablet once daily.
  • Taking it with food or milk in the evening improves tolerability. However, if you have trouble sleeping or get nightmares from hydroxychloroquine, take it in the morning instead of the evening.
  • After three to seven days, increase your dose by a tiny amount, such as taking ½ tablet in the morning with food and ½ tablet in the evening.
  • Three to seven days later, go up on the dose again by a small amount (unless the above is already at your total quantity): such as taking ½ tablet three times daily with food.
  • Three to seven days later, see if you can combine any of your doses: such as ½ tablet in the morning and a full tablet in the evening
  • Three to seven days later, if your full dose is 400 mg daily, take a full 200 mg tablet in the morning and a full 200 mg tablet in the evening. Some people may do best by taking ½ pill in the morning, ½ tablet midday, and one full tablet in the evening.
  • Very Important: At any point, if you get any of the side effects at all (for example, even just a slightly upset stomach), DO NOT CONTINUE THAT DOSE. We do not want you to feel bad. Instead, go down to the previous dose that you tolerated well. Figure out the highest amount you can handle that does not give you any side effects.

Can I still take hydroxychloroquine if I get an allergic rash from it?

If your rash was not severe, you could often get your body to tolerate it through a dosing technique called “desensitization.”

(Examples of severe rashes, after which you do NOT want to try taking hydroxychloroquine again, include things like Stevens-Johnson syndrome and toxic epidermal necrosis. Ask your doctor first).

With 100 mg tablets now available, desensitization has become much easier.

You first need to stop the hydroxychloroquine until the rash has completely disappeared. Then, I recommend the following, which is not too different from a published hydroxychloroquine desensitization technique. Do NOT do this without your doctor’s permission:

How to take hydroxychloroquine after having a rash (desensitization)

  • Take ¼ of a 100 mg hydroxychloroquine tablet once daily. NOTE: This does not need to be exact. A little smaller or a little bigger than a ¼ tablet is fine.
  • After three days, take ¼ tablet two times a day.
  • Three days later, take ¼ tablet three times a day.
  • Three days later, take ½ tablet in the morning and ½ tablet at night
  • Keep following a similar pattern, increasing by ¼ tablet every three days until you reach the total target dosage. Your doctor can then give you larger tablets (such as 200 mg) at that time.
  • If you get a rash, immediately stop taking hydroxychloroquine until the rash disappears.
  • Write down the previous dose of hydroxychloroquine that you took before the rash occurred. That will be your largest tolerable dose for you.
  • After the rash disappears, restart the desensitization at ¼ of a 100 mg tablet daily and slowly increase it per the above instructions.
  • When you reach the maximum dose you wrote down above, stop there and stay on that dose.

What can I do if hydroxychloroquine is too expensive for me?

Go to a prescription coupon source (such as GoodRX) and download the coupon. Take it to your pharmacy to pay for the prescription. For example, today (September 2022), you can get 180 of the 200 mg tablets for $42 ($14 a month if you take two pills a day or 400 mg daily).

What is the best dose of hydroxychloroquine to take?

Most rheumatologists dose hydroxychloroquine at a dose of no more than 5 mg per kilogram of actual body weight per day.

An uncomplicated way to remember the amounts is that someone who weighs 135 pounds to 170 pounds would take 300 mg daily. Someone less than 135 pounds would take 200 mg daily, and someone more than 170 would take 400 mg daily.

However, this dosing recommendation is controversial and has many critics (including myself). This is the 2016 recommended dosing by the American Academy of Ophthalmology (AAO). However, it is based on only one study that looked at dosing to prevent eye complications (retinopathy). It did not look at the effectiveness of this dosing recommendation, and the way it looked for eye complications did not use the best research methods.

A 2022 Harvard study supports this view. Their systemic lupus patients who were taking HCQ at the AAO recommended dose of no more than 5mg/kg/d were twice as likely to have lupus flares compared to those taking higher doses. Even worse: They were six times more likely to have moderate to severe flares, which are associated with a high risk of increasing permanent organ damage. This should be a call to arms by all rheumatologists to start using HCQ drug levels as described below to manage their lupus patients optimally.

Jorge AM, Mancini C, Zhou B, Ho G, Zhang Y, Costenbader K, Choi HK. Hydroxychloroquine Dose per Ophthalmology Guidelines and the Risk of Systemic Lupus Erythematosus Flares. JAMA. 2022 Oct 11;328(14):1458-1460. doi: 10.1001/jama.2022.13591. PMID: 36112387.

Using hydroxychloroquine drug levels for dosing in lupus

Since hydroxychloroquine drug levels have become available, many of us find that some patients need higher doses than recommended, while others need lower doses.

I recommend asking your rheumatologist (or other doctors) to check a “whole blood hydroxychloroquine drug level” every time you have labs done. Make sure it says “whole blood.” There are other methods for hydroxychloroquine drug levels that are unhelpful. Quest and LabCorp (the two most common commercial labs in the United States) do this test. In addition, most insurances cover the test.

The best timing for the drug level is right before your scheduled dose (called a trough level). However, this is not always practical. The second best alternative is to not take your hydroxychloroquine on the day of your blood tests until after your labs are done. If you take hydroxychloroquine and then get your labs done a few hours later, your level can end up being artificially much too high (an inaccurate result).

“Regularly measuring hydroxychloroquine drug levels should become the standard of care in the management of all patients who have lupus”

Dr. Michelle Petri, Medical Director, Johns Hopkins Lupus Center

The perfect “sweet spot” goal would be to have a level of 1000 ng/mL to 1200 ng/mL.

When my patient has been faithfully taking their medication regularly, then I know this level is accurate. If the level is too low, I increase their dose. If the level is too high, then I lower the dose.

If a patient just started taking hydroxychloroquine, it is important to wait at least 1 1/2 months before checking their drug level. After adjusting a dose in someone who has been on it for a while, the level can be checked a month after the dose change. If the drug level is not at the target level above, I adjust the dose.

However, it is not easy to get it exactly at this level. A level of 750 to 1500 is more realistic for many patients. A few patients may need a level as high as 2000 ng/mL to keep their lupus under control. I do not allow levels greater than 2000 in my patients to reduce their risk for hydroxychloroquine retinopathy.

The reasoning for keeping it above 1000 ng/ml is that this has been shown to lower lupus flares, decrease overall disease activity, and decrease the risk of strokes, blood clots, and heart attacks.

The reasoning for keeping it less than 1200 ng/mL (up to 2000 ng/mL max) is to decrease the risk for side effects, such as eye problems (retinopathy), stomach upset, and dark skin pigmentation (hyperpigmentation).

How can I prevent eye problems from hydroxychloroquine?

As described above, one method is to ask for a drug level every visit.

It is also important to have your eyes tested regularly as per the advice below.

What eye tests should I get while taking hydroxychloroquine?

Ensure you get two eye tests yearly (if you do not have Asian ancestry, discussed below). The best tests are to get a visual field 10-2 (VF 10-2) and a spectral domain optical coherence tomography (SD-OCT). You must ensure they are exactly these tests. Most eye exam places can perform a VF 24-2 or VF 30-2 (commonly used for glaucoma), but many cannot do a VF 10-2. It is an expensive machine.

If your location does not have both tests mentioned above, then a fundus autofluorescence (FAF) test or a multifocal electroencephalogram (mf-ERG) can be substituted.

Always make sure you get two different tests done each year. Getting only one test is not sufficient. Eye problems can show up on one test first and not the other.

Eye tests recommended for Asians

Around half of the people with Asian ancestry can get eye problems missed by the VF 10-2. They need either a VF 24-2 or 30-2. However, these two tests can miss retinopathy in those Asians who develop the more common type of hydroxychloroquine retinopathy (so Asians also need to get a VF 10-2 test as well).

Therefore, Asian patients need three yearly tests instead of two. They should get a VF 10-2, SD-OCT, and a VF 24-2 (or a VF 30-2).

How often should I get eye exams for hydroxychloroquine?

Everyone should get a VF 10-2 and an SD-OCT soon after starting their medicine. Most people can then wait five years before doing both tests yearly.

However, people at increased risk for retinopathy should get both tests yearly immediately after starting hydroxychloroquine. This includes those with decreased kidney function, preexisting retina and macula problems, and those taking tamoxifen. If your eye doctor recommends yearly exams after your first tests, you should also get them done. For example, diabetes can cause retinopathy, and some eye doctors in my area recommend yearly tests for diabetics. Some doctors may recommend yearly tests immediately if you are short, obese, over 60 years old, or have severe liver disease.

Good news from a 2023 study…

our findings suggest that, under current screening recommendations and dosing patterns, loss of visual acuity from hydroxychloroquine retinopathy should be rare

Melles RB, et al. Hydroxychloroquine Dose and Risk for Incident Retinopathy: A Cohort Study

What if my eye doctor tells me that my eye tests are abnormal and that I should stop my hydroxychloroquine?

The eye tests mentioned above often have abnormalities due to eye problems unrelated to hydroxychloroquine and can be misinterpreted by eye doctors who do not specialize in hydroxychloroquine retinopathy.

I always ask my patients to see a hydroxychloroquine retinopathy expert who can do the mf-ERG test. Therefore, I would recommend that you do the same.

These machines are expensive, and properly interpreting them requires a lot of special training. In the Washington DC area, where I practice, I recommend seeing Dr. Reshma Katira. She is in Silver Spring, Maryland, and Alexandria, Virginia. The Johns Hopkins Wilmer Eye Clinic in Baltimore, Maryland, is also reputable. Dr. Michael Marmor at Sanford in Palo Alto, California, is a well-known expert with mfERG. I am not familiar with experts in other areas. You would need to ask your ophthalmologist.

If your ophthalmologist is unsure who to send you to, look for the best retinologist in your area. Someone at a major medical school teaching institution is usually an excellent choice.

Suppose the abnormality is due to an eye problem unrelated to hydroxychloroquine (which is most of the time in my experience). In that case, the mfERG test should be done yearly while taking your medicine.

What if I am allergic to or cannot tolerate hydroxychloroquine? Is there an alternative to hydroxychloroquine for lupus?

If you are truly allergic to hydroxychloroquine, absolutely cannot tolerate even low doses, have had a severe reaction to it, or have hydroxychloroquine retinopathy, there is an alternative. You can ask your doctor to prescribe the antimalarial drug quinacrine. It is again available (as of 2022) after a period of not being available.

Ask for Brand Name Plaquenil

For some people, brand (also called trade) name Plaquenil works better or is easier to tolerate than generics. If you have tried the advice above and still have problems, ask your doctor if the brand name Plaquenil is an option for you. If so, make sure your doctor puts “brand only” on the prescription.

For more in-depth information on using 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.

If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help. 

What are your comments and opinions?

If you take hydroxychloroquine or chloroquine for lupus, what has your experience been? What do you recommend for other patients?

Do you have any questions to ask Dr. Thomas?

Please click on “Leave a Comment” above to comment.

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For more in-depth information on Top Tips on Taking Hydroxychloroquine for Lupus [Ultimate Guide AUG 2023]:

Read more in The Lupus Encyclopedia, edition 2

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

If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help. 

What are your comments and opinions?

If you have lupus, what has your experience been? What do you recommend for other patients?

Do you have any questions to ask Dr. Thomas?

Please click on “Leave a Comment” above to comment.

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  1. This is interesting, I am 90 lbs and have taken 200 mg/day since 2019. No one has ever checked the blood level, but they do make sure I get my oct and erg every year before renewing my prescription. I will ask about the lab test at my next rheumatology appointment. Maybe a different dose would control symptoms better.

  2. “Also, taking something like bismuth subsalicylate (like Pepto Bismol) with your hydroxychloroquine can reduce gastrointestinal issues.”
    I was told by a pharmacist that I can’t take any antacids including Pepto 4 hours before or 4 hours after taking Plaquenil as they can bind in the gut and this reduces the efficacy of the hydroxychloroquine.

    Is it okay to take together?

    • absolutely! It is one of things I recommend doing. I can find no research to support that interaction at all, so I do not think it is true. If bismuth is taken in high doses (over 3 grams daily), then the interaction can potentially lower glucose levels. So, that is rarely a problem.

      Here is an excerpt from the link below:
      Agents with Blood Glucose Lowering Effects / Salicylates


      Dose: This interaction is likely only of concern when using salicylate doses of 3 grams per day or more.

      Risk Rating C: Monitor therapy

      Summary Salicylates may enhance the hypoglycemic effect of Agents with Blood Glucose Lowering Effects. Severity Moderate Reliability Rating Fair

      Thanks for asking… Donald Thomas, MD

  3. Very useful information thank you. I am from South Africa and here we don’t get Hydroxychloroquine since Covid. The Government never renewed the licences for use by patients. The Government supplies Plasmoquine. It doesn’t work and it is just terrible to be without Hydroxychloroquine.

    • Veronica… how sad! That is so irresponsible. The US started that after the Trump fiasco, but fortunately wisened up quickly. I feel so bad for you and hope things get better fast!

      Donald Thomas, MD

  4. Firstly, I’m really looking forward to the second edition of the book. The first has been indispensable, particularly when living in a part of the world with few medical specialists and it’s the GP who has to deal with things.
    I have a question about “Asians” re eye testing. I know this means different things in different parts of the world. Does this include south Indians? I ask because I’m Tamil. Or does it refer to East Asians?

    • Setha: Thank you for your vote and question. That is a million dollar question. We have a long way to go regarding ancestry and genetics in research. How can we lump people in Goa India and Japan together in an “Asian” recommendation? They did not carve this out. I tend to be more careful and conservative, so I do recommend three tests (VF 10-2 and 24-2, and SD-OCT) for my south Asian patients.

      I hope you find the second edition helpful. Lupus experts from across the world contributed to each chapter, making it even better!

      I wish you the best in health and life!

      Donald Thomas, MD

  5. Correction to the last message… I’m half Tamil 🙂

  6. Hi Dr. Thomas I have been taking 300mg of hydroxichloroquine, 81mg asprin and cimetidine for my stomach together in the morning, I recently was told by the pharmacist that I shouldn’t take the cimetidine with hydroxichloroquine at the same time as it can cause hydroxichloroquine to have more concentration in my blood. I’m wondering your thoughts on this.

  7. Hi Dr Thomas, I’ve ramped up Plaquenil to 400mg a day in divided doses after experiencing pretty significant anxiety when first starting it at full dose. But now the anxiety is back worse than ever and dizziness is bad. I also have hx of migraines and dizziness, as well as depression/anxiety. But this is on a whole new level. Rheum says she doesn’t think HCQ is contributing to it. Are there some folks who can’t tolerate HCQ due to CNS impacts? I know it’s rare. Any advice?

    • Julie: Sorry I saw this comment so far out. I hope you are doing better. Only thing we can usually do is find the maximum tolerable dose. HCQ absolutely can make anxiety worse in some people. I hope you are doing better

      Donald Thomas, MD

  8. Hi Dr.Thomas,

    I tested positive for ANA,1:640 titer Homogenous pattern, anti cardiolipin antibodies,high antichromatin, antibodies, and a high SED rate. Clinical manifestations fatigue, stiffness, joint pain, brain fog, insomnia. My Rhemuatolgist wants me to start planqenil and has labeled my condition as pre onset lupus? Or UTCD… He mentioned that Antichromatin antibodies are not useful markers in diagnosing lupus and not used in the industry anymore? Is this true or should I be seeking a second opinion? Just ordered your book and are eagerly awaiting its arrival!

  9. Please can I ask who the author if this article is? I cannot find it listed.

  10. Has there been any studies showing that Hydroxychloroquine works at doses below 200 mg per day?

    • Mike: We have no studies like that because we’d only try it in a small fraction of patients, and there are just not enough of them. I have a couple of patients on 100 mg daily who have great drug levels at 1000 to 1200 ng/mL

      Donald Thomas, MD

  11. Sorry, I was also curious if most people that have a mild rash can become desensitized? Does the desensitization usually work generally?

    • Mike: Desensitization works in most people who have a mild drug sensitivity. Does not work in everyone. If you have not done it yet, just an FYI, HCQ 100 mg tablets were just $15 for 30 tablets on today. Can start with just 1/4 tablet (25 mg a day) if your doc approves.

      Donald Thomas, MD

      • I’ve been on hydroxychloroquine for 14 years . I take it for cutaneous lupus and sjogrens . Just recently started experiencing itching when I take it, no rash. The itching is concentrated in face area , and eyes feel like I am having a reaction. Rheumy suggested trying different manufacturers or the brand . Unfortunately the brand is very expensive . Should I be cutting the pill and only taking 1/4 for a few days etc.? I have access to 200 mg tablets . Also I had a pharmacist tell me to take an antihistamine like zyrtec 30 min before I take it but zyrtec makes me too drowsy . Any suggestions will be greatly appreciated . Hydroxychloroquine has been a blessing to me and I hope that I can continue with it . For right now I have stopped to try again soon . I just don’t want to take the whole pill and again experience the itching again

        • Jeannette: I’m glad you have found it helpful. I was just now working on a talk for primary care providers and using HCQ for Sjogren’s disease.

          The following is what I would do with one of my patients (so please ask your rheumy first).

          I’d have them stop the HCQ for a short time and see what happens (like 1-2 weeks should be sufficient). If the itching persists, then other causes should be considered (such as dry skin from Sjogren’s) and I’d want my patient to see a very good medical dermatologist (someone who specializes in these disorders; not someone who does lots of cosmetic derm). You may have already seen it, but check out my dry skin blog:

          If it gets markedly better, then I would absolutely do the desensitization. You can get the 100 mg tablets using a goodrx coupon for a reasonable price and just start off with just 1/4 tablet a day (use a very good pill splitter, like the “Multiple Pill Splitter” on Amazon) and go up on the dose every 3 days, using the schedule in this blog.

          I hope this helps… let us know how you do, what happened, what worked or did not work.

          Good luck and I hope you do well.

          Donald Thomas, MD

          • ..Dr. Thomas , I really appreciate you taking the time to answer my question. Since I have tried different generics and they all have caused itching , my Rheumatologist suggested going with the Brand. When I stop the hydroxychloroquine the itching completely goes away. So My Dr . gave me a prescription for the brand Plaquenil 200 mg. Since the brand is too expensive here in the US I’ve gone an ordered the brand from Canada from the manufacturer Sanofi Aventis in the meantime . When I have my next appt. I will ask her about the 100 mg. Not sure if she is aware of the hydroxychloroquine 100 mg. When I receive the Brand even though it’s the 200 mg , can I do the same starting at 1/4 a pill etc. , or any other suggestions will be greatly appreciated. Thank you so much ! I will keep you posted . Thank you also for the recommendations for the pill splitter. The Plaquenil should be coming in a few days.

          • Jeannette. Yes, you can split the brand name as well. If the pharmacist tells you should not, ignore it. They only say this because it has a bad taste and is not scored. However, ask your doc first about if you should try the lower dose eg 1/4 tab

            Donald Thomas, MD

  12. Dr. Thomas , I started taking 1/4 of the brand Plaquenil (200mg) . It caused my face and chest to turn red . But no itching or any other symptoms . By the afternoon it would calm down . At my visit with Rheumatologist she told me that she wasn’t sure why that was happening . At this point I’ve decided to stop again and wait 2 weeks to see if it keeps happening and looking to get another opinion . Could this just Be my body reacting to the Plaquenil and not an allergic response ?
    Thank you !

    • Jeannette: I’m not sure either. However, I will say that I have had patient get “weird” symptoms from HCQ. What you describe I would consider a “nuisance” side effect and not an allergic reaction. It all depends upon how much it bothers you. If you were my patient, I’d ask you to take it in the evening. For some reason, taking HCQ seems to cause less side effects than when taken in the AM or day time (however, check with your rheumy first).

      Let us know what happens

      Donald Thomas, MD

      • Dr . Thomas , I will try taking it at night . Thank you !

  13. Dr Thomas, I have been recently diagnosed with SLE and my rheumatologist prescribed Plaquenil twice a day for 10 days (2 x 200mg), then going down to one tab a day (200 mg). I felt so good after starting it as I was really suffering for the last three years (being undiagnosed and symptoms worsening when the “wave” hit). My hands were instantly better, my rashes slowly disappeared, no more night sweats, and the horrific bodily pains slowly subsided over those 10 days. My symptoms slowly started crawling back in the next 10 days as I decreased the dose and I had fully blown symptoms back at day #20. My rheumatologist refuses to increase the dose because of “the terrible side effects that this medicine might have” but so far I only felt mild vertigo after the first dose for the day (it goes away within 30-40 min). Also from what I have read so far this is the base therapy for lupus with very mild side effects, eye toxicity is rare (of course, strictly scheduled eye exams are a must). I am afraid the dose might not be sufficient for me (163cm, 72 kg female) or shall I wait indeed for the medicine to accumulate in the lower dosage (200mg daily), no matter the pains, rashes, etc?

    • So sorry to hear that Elena. I can say the following.
      1) The general standard of medical care is to at least use HCQ up to 5mg/kg/d. For a 72 kg woman, that comes out as 300 mg a day. It never hurts to be armed with actual medical articles.
      Here is the article that specifically states that up to 5 mg/kg/d is safe:
      Here is a followup article by Dr. Melles himself (the HCQ retinopathy guru) where he states in the article that using this dosing and as long as a VF 10-2 and an SD-OCT are done yearly, vision problems are rare:
      2) Many of us lupus experts are now relying on whole blood HCQ drug levels to help guide the effectiveness and safety of different doses in patients (dosing by just body weight is actually stupid for a drug that has such a wide variation in absorption as we see with HCQ). This was greatly supported when an international expert, Dr. Arnaud, even stated in his lecture at our recent ACR meeting in San Diego that he recommends a level of 750 – 1200 ng/mL (I and others like 1000 – 1200 ng/mL). Less than 1200 has the least amount of problems with eye problems. Ask if it is OK for him to check drug levels on you to help him and you feel more comfortable with the final dosing. Here is a link to an article on Dr. Arnaud’s fantastic talk:

      If you print out the above, maybe that would help your case.

      (it is hard for a doc to argue against actual medical articles and the recommendations of key opinion leaders. btw… I’ll just add… it is very hard to keep up on all aspects of every disease in rheumatology. Your supplying these articles could be very helpful for education. Not all rheumatologists see them)

      I hope that helps and good luck,

      Donald Thomas, MD

      • Thank you so much, Dr Thomas! Your help is greatly appreciated. I will print the articles and try to discuss my case again.

  14. Dr Thomas, I was diagnose with SLE, hypothyroidism, Sjogrens, at the age of 36 and I’m now 65. I’ve been on hydroxychloroquine 400mg daily since I was diagnosed. I’m grateful for the drug, haven’t had any major issues except some lung involvement with Pulmonary Fibrosis. My facial skin has become dark, is this a result of being on the drug for so long? Should you every take a break from the drug?

  15. Am taking hydroxychloroquine to diminish sarcoid lesions. (They are very large and on my face). Everything else has failed and I am willing to experience a higher level of discomfort than most to diminish them. I haven’t been on it long enough to see improvement – just a week. I began experiencing pretty frightening sleep paralysis – like being stuck between dreaming and awake on the 5th day. When I wake up I am at the end of a nightmare. It ends quickly but is upsetting. Is there a way to get around this?

    • Allison: That does not sound like a good side effect to put up with as it is going to cause fatigue etc. Ask you doc, but if you were my patient, I would most likely have you stop until normal. Then restart with just 1/2 tablet each AM for a week; then try a full tablet in the AM right after waking up; then a week later if tolerating that well… try 1 1/2 tablets in the AM.

      I did have a patient with very bad lupus pernio on her face from sarcoid and she did go into remission on HCQ for many years. I hope you get a similar result.

      Donald Thomas, MD

  16. I am so thankful I came across this page!! So much helpful information. I’ve been itchy all over but my head lately has been brutal!!! I have no rash either. I’m now thinking it’s maybe the hydroxychloroquine? I just took Benadryl and hopefully that helps relieve this.

    I had a question Donald or for anyone that might know the answer to this… I saw in the article that the correct dosage based off of weight varies… I’m 112lbs and 5’5.. my doctor has me take (200mg Monday-Friday) and on (Sat & Sunday Take 2 pills 400MG) Is that too much based off of my weight? I doubt my age matters but if it does I’m 32 for reference.

    Thank you, Laura

    • Laura: I am so glad you found my article helpful and I hope your itching gets better. If it occurs after showering, read the aquagenic pruritis section.

      The recommended dose for your stats is 255 mg daily. Therefore, you are on the correct dose.
      However, I prefer to also go by blood level results. I check a whole blood HCQ drug level. If less than 750 ng/mL, I increase the dose and use the blood levels to help me decide. (HCQ absorption varies from 25% to 75%).

      I hope that helps.

      Donald Thomas, MD

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