If you’re living with lupus, you may experience unplanned and unwanted weight gain during the course of treatment. Although unexpected weight changes can be frustrating or concerning, understanding the underlying cause can help you better manage them.

Members of MyLupusTeam often discuss lupus and weight gain. “I’m still struggling with my weight,” one member wrote. “I’m thinking of getting a referral to a nutritionist.”

Another said, “My body is changing, even today. I don’t know if this is real weight gain or swelling.”

Causes of Weight Gain When You’re Living With Lupus

The most common form of lupus is systemic lupus erythematosus (SLE). While SLE can affect anyone, more than 90 percent of SLE diagnoses occur in women, often starting at childbearing age, according to Medscape. Weight changes during this time of life are normal, but living with lupus can make maintaining a healthy weight an even bigger challenge for many reasons.

Make sure you tell your rheumatologist if you’re experiencing weight changes. Your doctor may be able to make recommendations or change your treatment plan to reduce any impact on your weight.

Swelling and Water Retention

General swelling and water retention are common for those living with SLE. This is primarily due to kidney problems that can affect people with the condition. Your kidneys clean your blood, filtering out what you don’t need and draining urine into your bladder.

Lupus nephritis is a complication of SLE, caused by inflammation in the kidneys, which can progress to kidney disease. Lupus nephritis can make releasing urine difficult, leading to water retention and swelling — which can cause weight gain. It also often results in the loss of vital proteins from your body, contributing to additional fluid retention.

Your doctor may recommend dietary changes to help reduce water retention and swelling. Cutting down on sodium (salt) can be beneficial in some cases. Depending on the severity of lupus nephritis and the extent of kidney damage, managing salt and water intake, as advised by a nutritionist and your rheumatologist, can significantly improve your overall well-being, not just your weight.

Lupus Medications

One of the main causes of weight gain in people living with lupus is the side effects of corticosteroid treatment. One study found that 76 percent of adolescents with SLE gained weight after starting corticosteroids, with 10.6 percent becoming clinically obese by the end. Obesity is diagnosed when a person's body mass index (BMI) is 30 or higher, which is calculated based on the ratio of height to weight. The study found that participants with a higher BMI, males, and those receiving higher doses of corticosteroids were most likely to gain weight. Prednisone and methylprednisolone especially can significantly impact weight.

Prednisone can help relieve joint pain and inflammation, but some MyLupusTeam members get frustrated about its effect on their weight. “Each time I take it, I gain more weight,” one member wrote.

Another said, “Steroids have made me gain 50 pounds. … I want to get rid of the prednisone.”

If you have concerns about your medications, talk to your doctor or health care team. If you can’t switch to a different medication, your doctor can help you find ways to better manage your symptoms. Together, you and your doctor can determine which treatments are best for you.

Symptoms of Lupus

The symptoms of lupus — like fatigue and joint pain — can make exercising regularly and eating well difficult. This is especially true during lupus flares, when symptoms are worse than usual.

If you’re struggling to exercise and eat well while managing lupus, try keeping a record of foods that bother you and which exercises you can do pain-free. Some MyLupusTeam members find that walking, gentle stretching, and yoga help.

“Looking forward to my exercise class — the stretching helps,” one member wrote.

“A little stretching using my yoga stretching bands, and the pain is finally starting to subside,” shared another member.

Tips To Minimize Weight Gain

You can make a few simple changes to minimize weight gain. Remember to always discuss things you’d like to try with your doctor first.

Explore Dietary Changes

Studies have suggested a connection between unhealthy diets and poor lupus outcomes. For those taking corticosteroids, losing weight is even more difficult.

A small study of women with SLE taking low doses of prednisone found that weight loss was achievable on both a calorie-restricted and low glycemic index diet. A calorie-restricted diet involves reducing the total daily caloric intake to promote weight loss while still providing essential nutrients. A low glycemic index diet focuses on consuming foods that cause slower, steadier increases in blood sugar levels, helping to manage weight and improve glycemic control. Over six weeks, both diets led to significant weight loss and improvements in waist and hip measurements, without worsening disease activity. Additionally, the study noted a reduction in fatigue, suggesting that dietary changes may help improve overall well-being in people with lupus.

Your doctor may recommend that you try an anti-inflammatory diet or eat more omega-3 fatty acids and whole grains. Eating well and avoiding unhealthy foods may help you manage your lupus symptoms and reduce excess weight.

Finding ways to exercise and eat well with lupus is important, but always consult with your doctor before starting any diet or exercise plans. Your rheumatology team can ensure that your choices support, rather than interfere with, your lupus treatment.

It’s important to find a balance between movement and rest that works for you. In general, avoid prolonged inactivity or excessive exertion, as both can lead to increased fatigue. Try to plan your day to include regular movement along with scheduled rest periods. Also, plan your meals in advance, especially with options for managing flares. This proactive approach can improve your well-being and make it easier to manage your weight.

Be Cautious With Weight Loss Medications

Semaglutide (sold under brand names such as Ozempic and Wegovy) has recently gained attention for its role in helping people lose weight. It is a GLP-1 receptor agonist, a class of drugs typically used to treat type 2 diabetes and obesity. However, research on the specific effects of GLP-1 drugs in people with lupus is still limited.

If you are considering GLP-1 drugs or any other weight loss medications or supplements, it’s important to consult your health care team. Depending on your individual circumstances, certain weight loss medications may be suitable, but over-the-counter options can interfere with your lupus treatment. Always discuss these options with your care team to ensure they are safe for you.

Stay Physically Active

According to the National Institutes of Health, regular exercise is beneficial for people with lupus and may help prevent weight gain. Additionally, if heart disease or cardiovascular disease runs in your family, be sure to talk to your doctor about how to best protect yourself from these conditions. Also, let your team of health care professionals know if you experience symptoms like chest pain or muscle pain when exercising.

For those living with lupus, exercise can improve muscular strength and flexibility — both of which lupus can affect. Maintaining a healthy weight through regular physical activity can help strengthen your muscles and support weight loss simultaneously.

When To Worry About Rapid Weight Gain With Lupus

Rapid weight gain with lupus could be a warning sign of nephrotic syndrome. This is a condition that occurs when your kidneys aren’t functioning properly. About 30 percent of people who develop nephrotic syndrome have another chronic condition, such as lupus or diabetes.

Nephrotic syndrome can cause rapid weight gain, swelling, fatigue, infections, and blood clots. In some cases, it can damage your kidneys so badly that you might need emergency dialysis. If you notice sudden weight gain while living with lupus, contact your doctor immediately to be evaluated for nephrotic syndrome or other conditions that could affect your health.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 231,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Are you living with lupus and struggling with weight gain? Share your experience in the comments below, or start a conversation by posting on your Activities page.