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If you’re living with lupus, you may experience unplanned 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 the changes.
Members of MyLupusTeam sometimes 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.”
Here’s what you need to know about lupus and weight gain, including what might cause it and how to manage it.
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The most common form of lupus is systemic lupus erythematosus (SLE). While SLE can affect anyone, the Lupus Foundation of America reports that more than 90 percent of SLE diagnoses occur in women, often starting at childbearing age. Weight fluctuations 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.
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, characterized by inflammation in the kidneys, which can progress to kidney disease. When lupus nephritis develops, the kidneys can lose protein in the urine (proteinuria) and retain excess salt and water, both of which contribute to swelling (edema) and weight gain. Signs of lupus nephritis may include foamy urine or blood in the urine, swelling in the legs or face, and frequent urination, particularly at night.
Your doctor may recommend dietary changes to help reduce fluid 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.
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 10.4 percent becoming clinically obese by the end of treatment. 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 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 [prednisone], 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 healthcare 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.
The symptoms of lupus — like fatigue and joint pain — can make it difficult to exercise regularly and eat well. This is especially true during lupus flares, when symptoms are worse than usual.
MyLupusTeam members often discuss symptoms like full-body pain. “A fever and lots of pain all over,” said a MyLupusTeam member. “Been having pain and swelling in my ankles, and the pain in the connective tissue of my calves — it hurts so bad. This has been going on for months,” added another member.
Beyond medications and symptoms, several other factors can contribute to weight changes in people with lupus. Poor sleep can disrupt your hormones, increasing your appetite and making you feel less full when you do eat. Depression and some antidepressants used to treat it may also lead to changes in appetite and weight gain. Thyroid problems, which are common in people with lupus, are also known to impact weight.
If you’re experiencing unexpected weight changes, ask your healthcare provider to review all your medications and screen for these conditions. Addressing these underlying issues can make a significant difference in managing your weight. Body weight in SLE patients is associated with disease activity.
You can make a few simple changes to minimize weight gain. Remember to always discuss strategies you’d like to try with your healthcare provider first.
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 with a calorie-restricted or a 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 without worsening lupus 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 healthcare provider may recommend that you try an anti-inflammatory diet or eat more omega-3 fatty acids and whole grains. You can also try planning your meals in advance, especially with options for managing flare-ups. A proactive approach and a balanced diet may help you better manage your lupus symptoms and your weight.
Finding ways to eat well with lupus is important, but always talk with your doctor before starting any diet plans. Your rheumatology team can ensure that your choices support, rather than interfere with, your lupus treatment.
GLP-1 receptor agonists like semaglutide (sold under brand names such as Ozempic, Rybelsus, and Wegovy) have recently gained attention for their role in helping people lose weight. These drugs work by mimicking hormones that help regulate appetite and blood sugar. Additionally, dual-incretin therapies that activate both GLP-1 and GIP (glucose-dependent insulinotropic peptide) receptors are now available. Tirzepatide (Zepbound) was FDA-approved in 2023 for chronic weight management in adults with obesity or overweight with at least one weight-related condition.
One small study found that GLP-1 medications helped reduce BMI in people with lupus without triggering flares. However, research on the specific effects of GLP-1 drugs and dual-incretin therapies in people with lupus is still limited. Additionally, there are rare case reports of drug-induced lupus associated with semaglutide. While these reports are uncommon and don’t prove that semaglutide caused lupus, they highlight the importance of discussing potential risks with your healthcare team. GLP-1 receptor agonists have additional cardiovascular and renal protective benefits in patients with lupus nephritis. However, more research in this area would shine more light on the matter.
If you are considering GLP-1 drugs, dual-incretin therapies, or any other weight loss medications or supplements, it’s important to consult your healthcare 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.
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. Let your healthcare provider know if you experience symptoms like chest pain or muscle pain when exercising.
For those living with lupus, exercise can help 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.
Some MyLupusTeam members find that walking, gentle stretching, and yoga help their lupus symptoms. “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.
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.
Effective management of your lupus symptoms can play a crucial role in maintaining a healthy weight. When your lupus is well controlled, you may experience less fatigue, joint pain, and inflammation, all of which make it easier to stay active and make healthier food choices. Work closely with your rheumatologist to find the right treatment plan for you. This may involve adjusting medications, monitoring disease activity, or trying new therapies.
Don’t hesitate to ask your healthcare team questions about how your treatment plan might affect your weight. Being proactive about managing your lupus can help you avoid weight-related complications and improve your overall quality of life. Your care team can also connect you with specialists like nutritionists, physical therapists, or mental health professionals who can provide additional support.
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.
Be aware of these red-flag symptoms that require prompt medical attention:
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.
On MyLupusTeam, people share their experiences with lupus, get advice, and find support from others who understand.
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I Have Lost A Good Bit Of Weight. Don't Really Know Why
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