Rheumatologists often advise people with lupus to stay on hydroxychloroquine (HCQ) as a lifelong treatment. Sold as Plaquenil, this antimalarial drug not only helps with various lupus symptoms, but it also has a good safety profile, meaning it has minimal side effects.

In addition, some MyLupusTeam members feel hydroxychloroquine gives them more energy, which could be a positive effect of the treatment on symptoms like lupus fatigue. However, one member worried that this newfound energy was keeping them up at night. “I’m wondering if the second (nighttime) pill gives me such a surge of energy that it’s keeping me awake. I can’t sleep!” they said.

There are some different reasons why people with lupus can have trouble sleeping. Hydroxychloroquine isn’t necessarily the root of the problem, but it does have some side effects that could affect your sleep.

Common Side Effects of Hydroxychloroquine

Insomnia isn’t listed as a side effect of hydroxychloroquine. However, some HCQ side effects that could impact your sleep include:

• Anxiety
• Fast heartbeat
• Nightmares

Health experts aren’t sure how common these effects are, but if you start to notice them shortly after starting HCQ, the medication may be to blame. Additionally, research linking hydroxychloroquine with psychomotor agitation (like fidgeting or pacing) suggests it’s possible to experience reduced-quality sleep and restlessness as a result of the medication.

Gastrointestinal symptoms are common side effects of hydroxychloroquine and can include:

• Nausea
• Diarrhea
• Stomach cramps
• Vomiting

These symptoms can also affect your ability to get a good night’s sleep, but they should clear up after a few days once your body starts adjusting to taking the medication.

If you’re having significant gastrointestinal problems, your doctor may suggest taking hydroxychloroquine with food or at certain times of the day. Some health care professionals recommend taking it at night if you have gastrointestinal effects and taking it in the morning if you have insomnia.

Other Causes of Insomnia With Lupus

Unfortunately, most people with lupus experience sleep problems, such as having difficulty falling asleep or waking up frequently throughout the night. These issues can lead to daily fatigue, an impaired immune system, and an increased risk of depression.

There are many possible causes of sleep disturbances with lupus. Symptoms like chronic pain, hot flashes, and itchy skin, as well as other medications to help control lupus flares, can also affect your sleep.

For example, the corticosteroid prednisone can cause hyperactivity. Taking prednisone first thing in the morning can help prevent it from keeping you up at night. While some causes of insomnia are easy to spot, others can be more difficult to pinpoint and/or could result from a combination of factors. Your doctor may suggest a sleep study or other testing to learn more about your insomnia before offering specific medical advice.

Strategies To Improve Sleep

Several lifestyle changes can impact your sleep at night. Following are some tips for better sleep:

• Aim for a consistent sleep schedule, i.e., going to bed and waking up at the same time each day.
• Limit your caffeine intake. The U.S. Food and Drug Administration (FDA) indicates that, for adults, consuming up to 400 milligrams per day is safe, but people metabolize caffeine differently.
• Avoid caffeine starting at least eight hours before bedtime. If you generally go to bed at 10 p.m., avoid caffeine after 2 p.m.
• Avoid having a nightcap, as drinking alcohol before bed tends to cause insomnia and excessive sleepiness the following day.
• Finish eating at least one to two hours before bedtime.
• Keep pets out of the bedroom.
• Make sure your mattress and pillows are comfortable.
• Set up your bedroom environment to be cool and dark.
• Try a sound machine or fan to drown out distracting sounds.
• Turn off electronic devices with screens, such as mobile devices, phones, and TVs, at least 30 minutes before bedtime.

If you need to nap during the day, try to be consistent with the timing of that as well. Don’t nap too close to bedtime, as it may affect your ability to get a good night’s sleep. A short 20-minute nap may be enough to give you a boost. Otherwise, aim for 90 minutes, which is the length of an average sleep cycle.

Addressing Potential Effects of Hydroxychloroquine

If you feel restless on hydroxychloroquine and notice yourself fidgeting or pacing around, practicing planned exercise could help. Exercise works to control anxiety that may negatively impact your sleep and quality of life. However, if you have joint pain or other physical limitations, it’s wise to meet with a physical therapist before choosing a workout program. They can help demonstrate which exercises will be the safest and most beneficial for your body.

You can also ask for a referral to a mental health professional who can suggest relaxation techniques and counseling to improve your response to stress. That being said, report to your doctor any symptoms of heart rhythm changes while taking hydroxychloroquine, such as a fast heartbeat or “thumping” in your chest. These can be a sign of a serious side effect or health condition other than anxiety.

Answering questions about medications and their side effects isn’t always straightforward, as people can respond differently to the same drugs. Most people on hydroxychloroquine don’t experience more difficulty sleeping once they start a medication like HCQ, but some do.

Your health care provider can help you weigh the pros and cons of different lupus treatment options to determine if a specific medication is worth taking. Connecting with other people — such as MyLupusTeam members who’ve taken hydroxychloroquine for decades — can provide you with perspectives to consider as you actively participate in your health care decisions.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, over 223,000 people with lupus come together to ask questions, give advice, and share their stories.

Have you experienced any adverse effects from hydroxychloroquine related to sleep? Do you use any over-the-counter sleep aids or other treatments? Post your thoughts in the comments below, or start a conversation by sharing on MyLupusTeam.