All About Hydroxychloroquine
Last updated: December 2021
Twelve years ago, I sat in a rheumatologist's office for the first time. "You have lupus," she said. "I'm going to start you on a dose of Plaquenil or hydroxychloroquine." Twelve years later, I still take my hydroxychloroquine every night.
Hydroxychloroquine for lupus
For most lupus patients, hydroxychloroquine is the first medication prescribed to them when they are diagnosed. Hydroxychloroquine is also used to treat RA or rheumatoid arthritis. However, hydroxychloroquine was not always used to treat patients with joint issues. Hydroxychloroquine, often distributed under the brand name Plaquenil, was originally developed as an anti-malarial. People traveling to regions of the world with high malaria rates have taken hydroxychloroquine as a preventative against malaria since shortly before World War II. Soldiers fighting in World War II were given hydroxychloroquine, and soldiers with lupus noticed that their symptoms improved. In 1955, hydroxychloroquine was proven to be effective in treating rheumatic diseases.1
My experience with hydroxychloroquine
When I started taking hydroxychloroquine after my diagnosis, I didn't notice any improvement for 6 months. This is partly because I was in a more severe flare than my doctor, or I realized, and hydroxychloroquine alone wasn't enough to lessen my symptoms. However, many lupus patients rely on hydroxychloroquine to manage their disease. Toward the beginning of the COVID-19 pandemic, hydroxychloroquine was falsely touted as a miracle cure for COVID-19. This resulted in a nationwide shortage of hydroxychloroquine, with some lupus patients being denied the medication they had taken for years to control their disease.
How hydroxychloroquine works
Hydroxychloroquine is a long-acting medication, which means that patients might not notice its effects for the first 3-6 months after they begin taking it. Patients taking hydroxychloroquine usually experience a decrease in the number of flares they experience, as well as increased tolerance to UV light. There is also evidence that hydroxychloroquine helps to protect lupus patients against bone loss, blood clots, and irreversible organ damage.2
Sometimes patients new to hydroxychloroquine experience side effects. Side effects of hydroxychloroquine usually come in the form of gastrointestinal issues. Cramps, nausea, vomiting, and diarrhea aren't uncommon as patients' bodies adjust to this medication. Eventually, these side effects go away for most lupus patients.2
Eyesight and hydroxychloroquine
Lupus patients taking hydroxychloroquine are advised by their doctors to have an eye exam at least once a year. This is because a very rare side effect of hydroxychloroquine is retinal toxicity.3 While retinal toxicity can't be reversed, the damage it causes to a patient's eyesight can be minimized if caught early. Overall, rheumatologists prescribe hydroxychloroquine to lupus patients because the benefits of the medication far outweigh the risks. It is important to keep your appointments with your ophthalmologist. But remember that damage to your vision is extremely rare.
My lupus medications
Every week, I set my prescription bottles beside me on the bed, then fill my pill pack for the week. Many of the other medications I've been on have come and gone from my life. I've been off and on several brands of immunosuppressants, including Imuran and CellCept. I spent a brief stint on Sulfasalazine. Antidepressants and steroids appear for months and then slowly dwindle to a stop as I taper off. However, the little white pills labeled HCQ have been a constant for these past 12 years and probably will be for the next 12 years.
How are you most likely to respond when someone offers you unsolicited advice about your lupus?