If you’re taking hydroxychloroquine (sold under the brand name Plaquenil) to help manage your lupus, you might be worried about unwanted side effects. Some people stop taking medications cold turkey when they have uncomfortable or even damaging side effects. You might also accidentally stop taking a medication if you forget to refill it or bring it on a trip.

MyLupusTeam members have asked others about the effects of quitting hydroxychloroquine abruptly. “Question: What happens when you stop taking Plaquenil randomly?” one member asked. “I thought I had it in my bag, and I haven’t taken it in two or three days.”

In this article, we’ll discuss how hydroxychloroquine is used to treat lupus, what its common side effects are, and why some members might be tempted to quit taking it cold turkey. We’ll also cover the risks of stopping your medication suddenly and when to talk to your doctor about your prescription.

What Is Hydroxychloroquine?

Originally, hydroxychloroquine was developed to treat malaria, a disease caused by a parasitic infection in the red blood cells. Doctors and researchers subsequently discovered that hydroxychloroquine is not only an effective antimalarial drug, but it’s also a great treatment for some autoimmune diseases.

Specifically, it’s used to treat:

• Systemic lupus erythematosus — A type of lupus that causes widespread damage to the skin, joints, lungs, kidneys, brain, and blood vessels
• Discoid lupus erythematosus — A type of lupus that causes an inflamed skin rash on the cheeks, nose, and ears
• Rheumatoid arthritis — An inflammatory joint condition that affects mainly affects the knees, hands, and wrists

How Does Hydroxychloroquine Work?

Lupus is caused by an overactive immune system that creates inflammation. As a result, immune cells begin attacking and damaging your body’s healthy tissues and organs.

Antimalarials like hydroxychloroquine stop your immune cells from growing and dividing, which helps control inflammation. They also reduce the amount of autoantibodies in your bloodstream. These are proteins that your immune system makes that attack your body’s tissues.

Because of its anti-inflammatory effects, hydroxychloroquine can help treat several lupus symptoms, including:

• Skin inflammation
• Joint pain
• Fatigue
• Hair loss
• Mouth sores

Studies also show that this medication helps control disease activity and reduces the number of lupus flares. Hydroxychloroquine may also help stop organ damage and reduce the risk of blood clots in people with lupus.

How Is Hydroxychloroquine Prescribed?

Hydroxychloroquine is prescribed as a tablet that’s taken once or twice daily by mouth. Your doctor or rheumatologist will adjust the dosing based on your body weight. Hydroxychloroquine typically comes in 200-milligram (mg) tablets, and most people take one or two per day.

If you’ve recently been diagnosed with lupus or you’re just starting to take hydroxychloroquine, your doctor may have you take 400 mg once per day for a few weeks. This helps build up more of the drug in your system to quickly manage lupus symptoms. Even though your dose may be higher in the beginning, the medication will likely take several weeks to begin to have an effect on symptoms. After this initial period, they’ll likely lower your dose to avoid unwanted side effects.

Your doctor may prescribe hydroxychloroquine alone or with other immunosuppressive medications to help manage your lupus. You may take corticosteroids like prednisone or methylprednisolone to help control inflammation.

Side Effects of Hydroxychloroquine

Most people who take hydroxychloroquine have very few side effects. It’s generally a safe medication that can be taken long term to treat your lupus and help manage your symptoms.

The most common adverse effects include:

• Upset stomach or nausea
• Abdominal cramps
• Vomiting
• Diarrhea
• Hypoglycemia (low blood sugar or blood glucose)
• Changes in your heart rhythm

To help prevent nausea or an upset stomach, you can take hydroxychloroquine with milk or food. You may also lose your appetite, have headaches, or feel generally weak or tired when you first start taking this medication. These side effects typically go away on their own as your body adjusts.

In rare cases, hydroxychloroquine can damage the retina or the light-sensitive tissue in the eyes. This serious side effect can develop after taking high doses or with long-term use. Be sure to go to your annual eye exam and have your vision checked while taking hydroxychloroquine.

Is It Safe To Stop Taking Hydroxychloroquine Cold Turkey?

If you’re experiencing vision problems or another unwanted side effect from taking hydroxychloroquine, you might be tempted to stop your hydroxychloroquine prescription cold turkey. MyLupusTeam members have asked others what their experiences have been after coming off of their medication.

One asked, “Has anyone come off of Plaquenil cold turkey? If so, did you have withdrawal symptoms? I’ve been off of it completely for nine days now, and today has been terrible. I’ve had diarrhea, my joints are really achy, I have random pains all over, and I’m itchy all over. Just wondering if anyone else has experienced symptoms like this?”

Some members responded with mixed results:

• “I stopped mine cold turkey about a year ago. It was affecting my vision. It didn’t affect me at all. You could just be having a flare-up.”
• “At one point when I was due for a refill I waited for about four days. Well, never again will I do that, I couldn’t walk!”
• “Had to go off Plaquenil due to vision damage. I quit cold turkey, no significant side effects.”

It’s generally not recommended to stop any long-term medications abruptly. Instead, it’s better to slowly decrease your dose over time to help your body adjust. The safest way to stop taking hydroxychloroquine or any other lupus medication is with guidance from a health care professional, such as your doctor or rheumatologist.

Stopping Hydroxychloroquine May Cause Lupus Flares

Many people take hydroxychloroquine long term to manage their lupus symptoms and control their disease. If you stop taking your medication, you may experience a disease flare.

This is because hydroxychloroquine doesn’t cure lupus — it can only help keep inflammation at manageable levels. Without the medication in your system to help, your symptoms will likely come back.

One study of more than 1,400 people with lupus who took hydroxychloroquine found that decreasing the dose increased participants’ chances of having a flare sooner by 54 percent, compared to those who took the same dose consistently. Additionally, researchers found that participants who stopped taking the medication completely were 61 percent more likely to experience a flare sooner than someone who continued their medication.

How To Safely Stop Taking Hydroxychloroquine

If you’re experiencing any uncomfortable side effects while taking hydroxychloroquine, or if you’ve noticed any changes in your vision, talk to your doctor or rheumatologist. They can help adjust your dose or switch you to a different medication to help manage your lupus.

Be sure to follow your doctor’s medical advice about discontinuing your hydroxychloroquine prescription. They may have you slowly decrease your dose over the course of several days to weeks to avoid any additional side effects. You may also start another lupus medication in the meantime to replace hydroxychloroquine — it’s best to follow your doctor’s instructions for the new medication closely.

Together, you and your care team can create a treatment plan to help you manage your lupus and lead a healthier life.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. Here, more than 222,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you tried quitting hydroxychloroquine cold turkey? What was your experience? Share your experience in the comments below, or start a conversation by posting on your Activities page.