If you’re living with lupus, you may experience unexplained weight gain during the course of treatment. Although unexpected weight changes can be frustrating, knowing what may be causing weight gain can help you better manage it.

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, 90 percent of new SLE diagnoses occur among women of childbearing age. Weight changes during this time of life are normal, but living with lupus can make maintaining your 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 lupus. 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 can cause inflammation of your kidneys (lupus nephritis), which can progress to kidney disease. Lupus nephritis can make it harder for you to release urine, leading to water retention and swelling — which can cause weight gain.

Your doctor may recommend that you change your diet to help reduce water retention and swelling. In some cases, cutting down on sodium can help. As one MyLupusTeam member recommended, “Eat less salt, and drink a lot of water.”

Medications

One of the primary culprits of weight gain in people living with lupus is corticosteroid treatment. One study found that more than 75 percent of participants with lupus gained weight after starting corticosteroids. 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 flares, when your 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.

Dietary Changes

Studies have suggested a connection between unhealthy diets and poor lupus outcomes. For those taking corticosteroids, losing weight is even more difficult. However, a small study of women living with SLE and taking low doses of prednisone showed that weight loss on a calorie-restricted or low glycemic index diet was possible.

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 your weight.

Finding ways to exercise and eat well with lupus is important, but make sure to talk to your doctor about your diet and exercise plans. Your rheumatology team can make sure these don’t interfere with your treatment plan.

Be Careful About Weight Loss Medications

Lupus is an autoimmune disease, and you want to ensure you don’t put yourself at risk of infection or organ damage if you’re living with this condition. Some dietary supplements and medications can cause side effects like high blood pressure. Always talk to your health care team before trying any weight loss medications.

Exercise

According to the National Institutes of Health, after ensuring you’re eating a healthy diet, the next best way to avoid obesity or weight gain is exercising. This is true for everyone, not just those living with lupus. If cardiovascular disease or heart disease run in your family, make sure to talk to your doctor about how to best protect against developing these conditions. Also, let your doctor know if you experience symptoms like chest pain when exercising.

When you’re living with lupus, exercise can improve your muscular strength and flexibility — two things that lupus can negatively impact. Exercising and maintaining a healthy weight can be good ways to strengthen your muscles and lose weight at the same time.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 214,000 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.