Taking Plaquenil for Lupus: Side Effects and What to Expect

I studied the oblong white pill in my hand. “This is it,” I told myself. The pill that would reverse the past two years of crippling fatigue, hair loss, and brain fog. The pill that signaled my doctors were finally taking my symptoms seriously. The pill that would give me my life back. I swallowed my first ever dose of Plaquenil. Then I waited.

My rheumatologist had warned me that it might take as long as six months for the medicine to reach its full potency. I scrolled through the calendar on my phone, marking a day six months in the future. Weeks turned into months with no change in my symptoms. The date on my calendar came and went. The only thing I felt was discouraged.

As with many lupus patients, Plaquenil, or hydroxychloroquine, was the first medicine I started taking after my diagnosis. I didn't experience any side effects when I started taking Plaquenil. My rheumatologist told me Plaquenil is well-tolerated, which means that most lupus patients don’t notice any side effects. However, the following side effects of Plaquenil do exist:

Upset Stomach and Nausea

My rheumatologist said that a small minority of patients experience upset stomachs. She told me that taking Plaquenil with food can help quell any nausea I might experience. So far, I have followed her advice and always take my medication with something to eat. I have managed to avoid experiences of upset stomach and nausea as a Plaquenil side effect.

Night Sweats

Some patients experience night sweats when taking Plaquenil. I've experienced night sweats before, although I can't be sure of the cause. It's frustrating to have my sleep interrupted when sleep is so important in managing my lupus. And no one wants to wake up in the middle of the night drenched in cold sweat. To help ease the symptoms of night sweats, I use thin, breathable sheets and bedding. Cotton or linen are my favorite fabrics for dealing with night sweats. Keeping my bedroom cool also helps.

If your night sweats are severe and you also feel dizzy, confused, or have tremors, you should definitely tell your doctor. This combination of symptoms can indicate low blood sugar, which can be dangerous. Fortunately, hypoglycemia is a rare symptom of Plaquenil, affecting very few patients.

Vivid Dreams

Another rare side effect that patients who take Plaquenil report are vivid dreams and nightmares. Have you ever had a dream so intense and realistic that you remembered it clearly in the morning and maybe even years later? One dream in particular I had years ago lasted about five seconds, but still feels as real as if it actually happened. Vivid dreams are often nightmares, and they feel as if they are happening in real life. These types of dreams have not been officially recognized by the NIH or the CDC as a side effect of Plaquenil. However, some patients do experience them. If vivid dreams escalate into depression or mood changes, tell your doctor. Plaquenil has been known to cause psychiatric problems.

Vision Changes and Eye Issues

When my doctor first prescribed Plaquenil, she warned me that an extremely rare side effect is vision loss. To make sure my eyes stay healthy, I visit an ophthalmologist once a year. At the ophthalmologist, I take a visual field test. This test monitors my peripheral vision to make sure it's not affected by the Plaquenil I take. The test is painless and feels like playing a video game. I stare straight ahead at a dot on a screen, then press a button on a clicker every time I see a flash of light in my peripheral vision. I make sure to schedule my ophthalmologist appointment every year.

My Long-Term Plaquenil Experience

Fifteen years after my diagnosis, I still take Plaquenil every day. The bottle of little white pills rests in its place in my nightstand. It's not alone. Beside it are two different types of immunosuppressants, a sleeping aid, and antidepressants. Over the years, my rheumatologist and I have worked together to find a combination of prescriptions that keeps my disease stable. Lifestyle changes, like resting throughout the day, going to bed early, and light exercise, are also a big part of my staying healthy. I've come to realize that no one pill was ever going to be the entire solution.