published by nonprofit Johns Hopkins Press
posted in Drugs used in lupus on September 23, 2022 by
Updated July 12, 2024
LATEST UPDATES: A study by Dr. Shivani Garg suggests that aiming for a hydroxychloroquine level of 750 to 1200 ng/mL is optimal for most patients. (For high-risk patients, I prefer 1000 to 1200 ng/mL)
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“
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?
Brand name Plaquenil is more tolerable and works better than generics for some people
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.
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?”
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, take it 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.
Some patients are told by pharmacists not to cut their pills in half. We often prescribe 300 mg of hydroxychloroquine daily, and the typical recommendation is to cut some of the pills in half (using a pill splitter) and take 1 1/2 tablets daily of the 200 mg tablets.
The manufacturer put in the package insert not to cut the pills in half for two reasons: First, the cut pill can have an unpleasant taste. However, I’ve had no patients complain of this. The second reason is that the tablets are not scored for cutting. However, we rarely have patients complain of the taste.
Regarding not being scored, this is OK. If someone doesn’t cut the pill exactly in two equal-sized pieces, this does not interfere with how well it works. In pharmaceutical terms, hydroxychloroquine has a very long half-life (very slow to get out of the body’s system, but also very slow to work). Therefore, having more on one day and less on the next day does not interfere with how well it works.
Some patients prefer to take 300 mg a day (on average) by taking 2 tablets, alternating with 3 tablets every other day. Taking 400 mg on one day (2 tablets) and 200 mg on the alternate day (1 tablet) averages out to 300 mg a day and works just as well as taking 1 1/2 tablet a day. People who do not like the taste or who do not like cutting tablets usually prefer this method.
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.
There are other things you can do to decrease the chances of missed doses:
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 at 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.
If these occur, I recommend that my patients do the following (ask your doctor first, but the vast majority will agree with this approach):
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:
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).
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.
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).
Dr. Michelle Petri, Medical Director, Johns Hopkins Lupus Center
The perfect “sweet spot” goal would be to have a trough, whole-blood hydroxychloroquine drug level of 750ng/mL to 1200 ng/mL for most patients. However, for high-risk patients, patients with severe disease, and patients who flare, I prefer 1000 to 1200 ng/mL. Studies by Dr. Nathalie Costedoat-Chalumeau show that patients with levels less than 1000 ng/mL are four times more likely to flare than those with higher levels.
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 above the target level, 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).
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.
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.
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).
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.
“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
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.
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.
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.
Read chapter 30 of The Lupus Encyclopedia, edition 2
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If you take hydroxychloroquine or chloroquine for lupus, what has your experience been? What do you recommend for other patients?
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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.
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?
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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.
“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
Dependencies
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
https://www.uptodate.com/drug-interactions/?source=responsive_home#di-document
Thanks for asking… Donald Thomas, MD
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
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.
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?
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!
Rennelle: I agree. However, the more autoantibodies someone has (like chromatin) the more likely they are of having an autoimmune disease. However, I do have a few patients where their level of anti-chromatin antibodies fluctuate with their disease activity… so it does help in some.
I hope you do well. Don’t forget to read my self-help blog post on how to treat lupus:
https://www.lupusencyclopedia.com/how-to-succeed-after-lupus-diagnosis/
Donald Thomas, MD
Jared: Sorry about that. I should go back and add my name to my blog posts.
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 goodrx.com 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: https://www.lupusencyclopedia.com/dry-skin-in-lupus/
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
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
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 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: https://www.aao.org/education/clinical-statement/revised-recommendations-on-screening-chloroquine-h
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: https://www.acpjournals.org/doi/10.7326/M22-2453
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: https://rheumnow.com/news/best-2023-our-old-friend-hydroxychloroquine
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
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?
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
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
Dr Thomas,
I had the pleasure of meeting with you through the Progentec Lupus study some months ago. You were so kind and every bit as I suspected you to be, so thank you for everything you do. I have bothered you with questions previously on your site and hope you do not care for another one. I asked my rheumatologist to order my HCQ levels, and he obliged – even though he did not feel it was necessary. I tried to do this by the book, I had my labs ran in the morning, prior to taking this medication. My results were 455ng/ml. I have taking HCQ for around 9 months now and I am faithful to take this daily. I take what I understood to be the max dose 400mg. I skimmed through this section in your book again and didn’t see this addressed. I did see where you had posted about genetics playing a factor into blood levels many months ago. I didn’t see this specifically addressed. What would you do for a patient who takes the max dosage, but doesn’t seem to be absorbing it very well? Generic vs Brand name (not sure if that is a thing with this medication?) I plan to ask for these levels checked in my next follow-up (probably 6 months), I just found it strange how low by levels were and was curious if an individual can go over 400mg if their levels were low.
Gabriel: Thanks for your kind words, and I’m so happy my information helps you.
This is an area where there are rheumatologists on both sides of the fence. Many rheumatologists feel uncomfortable going up on the dose all because of the decades old “400 mg” as the maximum long term dose. However, this has never been proven to be the correct maximum dose.
Studies show that the absorption and bioavailability of hydroxychloroquine ranges from 25% to 75%. It makes no sense to have strict mg dosing for everyone and certainly not just on body weight.
I feel very comfortable dosing by blood levels. I showed in a previous study that after gastric bypass surgery, some patients have markedly lower levels of HCQ due to malabsorption. I have had those patients on 500 mg to 600 mg a day with perfect blood levels and better control of their inflammation. As long as the level stays less than 1200 ng/mL, the risk for eye problems is incredibly low.
If I had a patient like you and you were in remission, I’d keep your dose the same. If you had active inflammation (determined by symptoms, physical exam, labs), then I would not hesitate in increasing the dose and use drug levels to determine the final dose.
There have now been several studies showing that dosing patients by the 5mg/kg of body weight leads to increased flares, disease activity, and hospitalizations (not on everyone but on average in the group compared to a group of patients taking more than 5 mg/kg/day of body weight)
I have had one patient switch from generic to Plaquenil and achieve better blood levels, so that could be a potential option.
Of course, you cannot force a doctor to go against what they feel comfortable doing. However, it never hurts to ask.
Just make sure to get your VF 10-2 and SD-OCT yearly… these tests are so sensitive for eye problems that an eye doc would see anything way before a patient would notice anything. Plus we still must keep in mind that the vast majority of patients will never have an eye problem (and I feel comfortable using drug levels to ensure it doesn’t happen).
Donald Thomas, MD
I had my colon removed due to ulcerative colitis, and that carries a risk of incomplete absorption of medications due to faster transit time. I’m also especially prone to diarrhoea, unfortunately. So I’m going to ask my rheumatologist about a whole blood HCQ drug level test at my next appointment.
By the way, I don’t have lupus, but autoimmune-type OCHOS (orthostatic cerebral hypoperfusion syndrome). It’s a condition in which an as-yet-unknown autoimmune process causes the cerebral arterioles to constrict abnormally, leading to chronic cerebral hypoperfusion. My rheumatologist is trying me on lower-risk immune treatments, for which I am very grateful.
Your website is useful for anyone taking HCQ. I may also be trying methotrexate later in the year and your page on that is bookmarked on my computer too.
Sarah: you are the perfect type of patient to measure whole blood levels on as it would make it so much easier to make sure you are on the right dose. Let your rheumatologist know I’ve had to use as much as 600 mg a day in patients with malabsorption. Methotrexate polyglutamate levels can help us monitor that (but self injectable may be best in this situation to ensure it gets into the system)
Good luck!
Donald Thomas, MD
Hi! Was taking Plaquenil for about 5 years for SS and doing great. After Covid only generic was available (from India) and I felt terrible from it. Tried multiple generics, sll bad! Stopped taking hcq about 2 years ago and felt fine, but now starting to feel joint pain, aches, fatigue. Does anyone know where I can get original name brand Plaquenil? Thank you!
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