If you are living with lupus, you’re probably familiar with common symptoms such as rashes, joint pain, and stiffness. But one symptom that may take you by surprise is a loss of appetite. Some MyLupusTeam members have wondered if the inability to consume food — even if you feel like you need to eat — might be a side effect of the medication hydroxychloroquine (HCQ), which is sold under the brand name Plaquenil.

“I’ve been on Plaquenil for only three weeks, and it seems this whole last week, I’ve had NO desire for food,” one member wrote. “Actually, the torturous part is, I’m actually very hungry, but NOTHING sounds, tastes, or looks good!! When I finally do decide on something to make myself eat, I can only eat about a quarter of whatever it is before I can’t eat anymore.”

If this sounds familiar, you may be curious about the potential connection between HCQ for lupus and appetite. Find out what might be affecting your ability to eat so you can manage this frustrating symptom and feel your best.

Are Appetite Issues Common When Taking Hydroxychloroquine?

Lupus is an autoimmune disease — your body’s immune system mistakenly attacks its own healthy cells and tissues. Systemic lupus erythematosus (SLE) is the most common type of lupus. HCQ is an antimalarial drug, but it’s commonly prescribed to treat autoimmune diseases including lupus and rheumatoid arthritis. Loss of appetite is listed as one possible side effect of HCQ. Side effects can be different for everyone, so another person’s experience may be different from yours.

Even if you don’t notice changes in your appetite while taking HCQ, you may experience other gastrointestinal issues that make eating challenging. Some people on HCQ notice side effects such as:

• Vomiting
• Diarrhea
• Nausea
• Cramps or stomach pain
• Upset stomach

These side effects may be temporary as your body adjusts to the drug and go away after a few days. However, if they linger and you continue to have trouble eating, reach out to your doctor for potential solutions.

Other Reasons for Appetite Issues

Even people with lupus who aren’t taking HCQ may find that they have appetite issues from time to time. This problem could be caused by steroids, depression or mood changes, and mouth sores or ulcers.

Steroids

Corticosteroids (steroids) such as prednisone can cause appetite changes, but normally it’s an increase in your appetite rather than a decrease. However, many MyLupusTeam members say they’ve had trouble eating while taking prednisone.

“I’ve had no appetite drop from Plaquenil, only from prednisone,” one member said. Another responded, “I take prednisone, and I feel the same way.”

If you’ve been prescribed prednisone, don’t stop taking it abruptly, even if it affects your appetite. Instead, get medical advice from your rheumatologist on how to taper down from a high dose slowly. Halting the medication too quickly can cause several side effects, one of which is a loss of appetite. Talk to a health care professional if you experience appetite loss, weight loss, or weight gain from taking prednisone.

Depression or Mood Changes

Living with a chronic disease like lupus can be challenging and can affect your mental health. One study found that the rate of depression was six times higher among people with lupus than in the general population. Anxiety, tiredness, and sleep disorders were also elevated in people with lupus.

If you’re experiencing mood changes, depression, or anxiety, these mental health issues could be affecting your appetite. One study from the American Journal of Psychiatry found that among participants with depression, 48 percent said their appetites had decreased.

By getting treatment for your mental health, you could help improve your appetite as well. Talk to your doctor about the feelings you’re having, and ask for a referral to get treatment. This may include seeing a counselor or psychotherapist, taking medication, or engaging in self-acceptance therapies.

Mouth Ulcers or Sores

About 25 percent of people with lupus develop mouth ulcers, or sores on the inside of their mouths, during flare-ups. This symptom can lead to issues like mouth pain or a sore throat. “I just got over a serious bout of mouth ulcers,” one MyLupusTeam member wrote. “Pretty much anything I ate was painful.”

If you have mouth ulcers that make it challenging to eat — or you simply avoid eating because you don’t want to irritate the blistering ulcers — talk to your doctor about solutions. They may prescribe you a medicated mouthwash to provide pain relief and help heal the lesions, or they may recommend food that may be less painful or gentler on your mouth.

Keep a Symptom Journal

Keeping a symptom journal can help you evaluate whether your medication might be connected to your loss of appetite. You and your rheumatology specialist can use your records to identify when the symptoms started and what you may have been doing around that time.

Losing your appetite can be frustrating, but you’ll need to continue taking the medications your doctor prescribes for your medical conditions. Stopping your medications suddenly can create worse problems and even intensify appetite changes.

Talk to your doctor about any side effects or drug interactions so you can work together to manage them. Meanwhile, they can help you find ways to take in calories to keep your energy levels up and to prevent low blood sugar levels and unwanted weight loss. This might mean seeing a dietitian for advice or simply adding an over-the-counter medication to your treatment regimen.

Your doctor can also ensure that you aren’t having an allergic reaction to the HCQ and can check for any other potentially serious side effects. For example, other side effects of HCQ may include:

• Hair loss
• Muscle weakness
• Skin rash
• Eye problems like blurred vision
• Shortness of breath
• Changes in heart rhythm

The Bottom Line

If you’re taking HCQ and notice a loss of appetite, make sure to let your health care provider know. They will assess your symptoms, explore other possible causes, and decide on the most suitable course of action for you. Keep in mind that individual responses to medications can vary, so it is always a good idea to ask a health care professional for personalized advice regarding your specific situation.

Meet Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, 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 experienced a loss of appetite while taking hydroxychloroquine? Do you have any tips for others with similar side effects? Share your experience in the comments below, or start a conversation by posting on your Activities page.