“LIKE” the Lupus Encyclopedia page & get Dr. Thomas’ lupus research, tips, and facts regularly. His book is available Amazon and JHUP. Below are additional topics about lupus that are not printed in the 2nd edition of the book.
Information about Quinacrine for Treating Lupus
The drug manufacturer of quinacrine (in India) had to stop production in 2018/2019. I have not been able to prescribe quinacrine to my patients since 2019. According to the American College of Rheumatology,
“the manufacturer did not pass inspection and was put on an import alert. This effectively shuts down any importation of quinacrine to the U.S. until the manufacturer goes through the necessary steps to be re-inspected or until another manufacturer chooses to register with the FDA and is willing to go through the regulatory processes to provide quinacrine.”
In case quinacrine becomes available again in the future, below is the excerpt from “The Lupus Encyclopedia” (edition 1) regarding its usage. I certainly hope it becomes available again. Many of my patients were doing well on quinacrine, especially for their lupus arthritis, rashes, and energy levels.
QUINACRINE (excerpt from The Lupus Encyclopedia)
Note: this is how all lupus drugs are discussed in the book. Very practical advice is given for each medication.
Quinacrine is the third antimalarial somets used to treat lupus (chloroquine and hydroxychloroquine are the other two). One of its major advantages is the lack of retina problems. Out of millions of quinacrine prescriptions since the 1930s, there have only been two reported cases of retinopathy in the medical literature. In one of those cases, the patient remained on quinacrine since her problem was not severe enough to stop it; after an additional four more years, her eye condition had not worsened. Another study reported on twenty-six patients who took quinacrine over thirty years, and none developed retinopathy.
No major pharmaceutical companies have produced quinacrine since 1992 (since it is not profitable for them to manufacture). There are not enough lupus patients taking it to offset the costs of production. However, it can be made by compounding pharmacists. Since it is not made by any pharmaceutical companies, most insurance plans do not cover the cost (in my experience). In the Washington, DC, area my patients are currently able to obtain it for about $35 a month. Lupus experts use quinacrine in patients because it works much faster than HCQ, and therefore it can be very useful to use along with HCQ initially to try to get quicker control of lupus, especially for severe rashes, mouth sores, hair loss, and arthritis. Since it does not affect the retina, it can be used in people who have eye problems that prevent them from being able to use HCQ. Lastly, if someone is on HCQ and has persistent mild lupus problems (such as fatigue, memory problems, mild rash, or mild arthritis), but is not sick enough to warrant strong immunosuppressant medicines or steroids, then quinacrine can be a better and safer alternative. It especially may be helpful for energy and memory in some people if those problems are directly due to lupus (instead of being due to depression, fibromyalgia, or other disorders). It can have rapid, impressive results when treating severe discoid lupus, mouth sores, and hair loss in some patients. In addition, it can be helpful for swollen lymph nodes, fever, sun-sensitive rashes, and headaches as well.
Generic available: Yes; however, it is not inexpensive since the capsules must be individually manufactured by a compounding pharmacist.
How quinacrine works: How it exactly works in lupus is not fully known. It may work like other anti-malarials discussed in this chapter or by other mechanisms. For example, quinacrine has been shown to bind to DNA in the nuclei in cells and actually decrease the production of antinuclear antibodies (the hallmark lab finding in people who have SLE). Just like other antimalarial medicines, it also decreases the effects of ultraviolet light activity in the skin. Ultraviolet light is one of the best-known activators of lupus activity.
What benefits to expect from quinacrine: Like HCQ and chloroquine, quinacrine is most helpful for mild lupus problems such as rashes, arthritis, serositis (pleurisy), fever, fatigue, and low blood counts. One of its biggest advantages is that it appears to stimulate the brain better, so energy levels and memory often improve better with quinacrine compared to the other antimalarial medications. It works a lot faster than HCQ (which can take six to twelve months for its full effects). Quinacrine can start to work by a couple of months, and by three months its full effect is noticeable. In fact, it can rapidly improve severe discoid lupus, hair loss, and mouth ulcers within 4 to 12 weeks.
How quinacrine is taken: It is usually provided as a yellow powder in capsule form. The usual prescribing dose is 100 mg a day. The dose is then tapered down as needed when patients are doing well. However, most patients do best if they continue to take it for a long time even if only taking it once or twice a week. Although it can be taken by itself, it works even better if taken along with HCQ and/or chloroquine.
If you miss a dose of your medicine: If you miss a dose of your quinacrine, take your next dose as soon as you remember that you forgot it on the same day. For example, if you usually take it at 11:00 AM every day and you realize at 8:00 PM that you forgot to take your medicine, go ahead and take your tablet for that day. Resume taking your next dose of quinacrine at 11:00 AM the next day. However, if you do not remember until the next morning that you forgot your previous day’s dose, just wait until 11:00 AM, and take your usual dose for that day, totally missing the previous day’s dose. Consult with your prescribing doctor to double-check these instructions, but these guidelines will suffice for most people.
Alcohol/food/herbal interactions with quinacrine: Alcohol should be avoided if you get stomach upset.
Quinacrine can be taken with or without food. However, taking it with food can decrease stomach upset.
Do not take Echinacea, which can increase immune system activity.
Potential side effects of quinacrine: The most significant potential side effect of quinacrine is that it can cause a severe blood problem called aplastic anemia. This is a condition where all the blood cell counts (red blood cells, white blood cells, and platelets) can become severely low, and unfortunately 50% of people who develop it can die from this complication. However, it is very rare, only occurring in one out of 50,000 people who take quinacrine. In patients who have lupus or rheumatoid arthritis, there have only been eleven patients ever reported who have developed this complication, and all but one were on much higher doses than the currently recommended dose. In addition, these patients were not having their blood work monitored carefully as is also currently recommended. Fifty percent of the patients who developed this severe complication developed an itchy skin rash called lichen planus before they developed the blood problem. Today because doctors monitor patients much more closely and use much lower doses of the medicine, as long as people stop the medicine if they get a rash, this side effect should be very rare, and potentially may not even occur at all. In fact, there are no reported cases of aplastic anemia in patients who take 100 mg a day and have their blood work monitored regularly. If anemia is noted while doing the blood work, it resolves when the medicine is stopped.
Another potential side effect to discuss is skin pigmentation. Quinacrine was initially developed as a yellow dye. Approximately 50% of people who take it will develop discoloration of the skin, eyes, or gums. Half of these people will have black and blue areas, and half will have a yellow tone to the skin. Interestingly, sometimes the skin can appear tan, and some patients actually like the esthetics of the tanned look. If the discoloration occurs, it goes away and the skin returns to its normal color when the dose is decreased or the medicine is stopped.
Other unusual rashes can occur with the use of quinacrine, including hair loss. Fortunately, these only occur in one out of two thousand people who take quinacrine. All skin changes should be pointed out to your prescribing doctor if they occur.
What needs to be monitored while taking quinacrine: Blood work for complete blood cell counts should be done monthly for the first few months, then every two to three months after that. No eye exams need to be done.
Reasons not to take quinacrine (contraindications or precautions): Allergy to quinacrine.
While taking quinacrine: If you develop a rash, discontinue it immediately and contact your doctor to get a CBC blood test done.
Pregnancy and breast-feeding while taking quinacrine: Quinacrine crosses the placenta. No studies have been done on pregnant women. There have been reports of successful pregnancies in women who took quinacrine throughout pregnancy and no adverse effects. It is not recommended during pregnancy.
If you do get pregnant while taking quinacrine, consider contacting the Organization of Teratology Information Specialists (OTIS) Autoimmune Diseases in Pregnancy Project at www.otispregnancy .org or 877-311-8972 or email firstname.lastname@example.org so that more can be learned about what happens when women on medications used in treating lupus become pregnant.
Adequate information is not available about breast-feeding while on this medication. It is not recommended while breast-feeding.
Geriatric use of quinacrine: No changes from the above information.
What to do with quinacrine at the time of surgery: It is always best to double-check with your rheumatologist and surgeon regarding specific instructions. However, quinacrine is probably safe to take up to the time you are told to stop taking medications by mouth before surgery.
Drug helpline for quinacrine: Unaware of any.
Website to learn more about quinacrine: Unaware of any. This appears to be some of the most practical information available.
Table 30.6 Potential Side Effects of Quinacrine
Nuisance side effects
Headache or dizziness
Contact your doctor. Resolves on lower doses or if medicine is stopped.
Stomach upset, nausea
Try taking it with food or with Pepto Bismol. Usually resolves at lower doses.
Contact your doctor. Usually resolves at lower doses.
Blue-black or yellow pigment changes of skin and gums
Resolves on lower doses or if the medicine is stopped.
Weight loss, loss of appetite
Resolves on lower doses or when stopped.
Stop the medicine immediately and contact your doctor to get a blood test done for complete blood count (CBC).
If bothersome, lower the dose
Serious side effects
Difficulty thinking, bizarre thoughts or behavior
Resolves after stopping the medicine.
Aplastic anemia; 50% of the time preceded by an itchy rash
Very rare (if ever) at current doses and with getting a CBC done regularly
Contact your doctor immediately.
Side effect incidence key (approximations, as side effects can vary widely study to study): rare < 1% occurrence; uncommon 1%–5% occurrence; common > 5% occurrence