Have you noticed swelling in your ankles or feet? This swelling is often caused by edema — the buildup of excess fluid in the tissues — and may be linked to underlying medical conditions like lupus or a side effect of certain medications. This swelling or puffiness related to excess fluid can occur in other parts of the body as well, including the face, hands, abdomen, and lungs.
Many members of MyLupusTeam have shared their experiences with this. One person wrote, “I’ve just been diagnosed with lupus (SLE), and my doctor put me on prednisone for two weeks. My feet, ankles, and hands are really puffy and swollen — so much that they hurt.” (“SLE” stands for “systemic lupus erythematosus,” the most common form of lupus.)
In this article, we will explore a few types of lupus medications that can cause swelling in the feet and ankles, explain why this happens, and offer tips on how to manage this side effect.
Corticosteroids, such as prednisone, help suppress and regulate overactive immune responses in the body, which is important when treating autoimmune diseases like lupus. By reducing the inflammatory response, they prevent damage to healthy tissues and internal organs, which can otherwise cause swelling, stiffness, pain, tenderness, and warmth in different parts of the body.
While corticosteroids help reduce lupus symptoms like swelling, they may also cause a side effect known as fluid retention, where the body holds onto excess water. The buildup of fluid can lead to swelling or puffiness, especially in the face, midsection, and legs. Water retention can also lead to weight gain.
Corticosteroids can also cause fat to redistribute in the body, which often leads to a swollen appearance of the face — known as “moon face” — and increased fat around the abdomen. This can be associated with symptoms of Cushing’s syndrome.
Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naproxen, are commonly used to manage pain and inflammation in lupus. NSAIDs can help relieve joint pain, muscle stiffness, and fever. NSAIDs may be used alongside other lupus treatments.
However, NSAIDs can impair kidney function, which may lead to fluid retention. This can cause edema, particularly in the lower legs, feet, and ankles, where gravity tends to draw excess fluid.
Antimalarial drugs, originally developed to treat malaria, are also effective for managing lupus symptoms like skin rashes, joint and muscle pain, inflammation, and fever. Antimalarials work by modulating immune system activity, reducing inflammation, and helping prevent lupus-related organ damage, including effects on the brain, spinal cord, and kidneys. The most commonly used antimalarial for lupus is hydroxychloroquine.
In rare cases, antimalarials can cause heart problems, which can reduce blood flow and lead to swelling, particularly in the lower legs and feet. When blood flow slows, fluid can accumulate in the tissues, contributing to edema in these areas.
In lupus, the immune system mistakenly attacks the body’s tissues as if they were intruders. Immunosuppressants work by slowing down or stopping the activity of immune cells, which eventually causes the cells to die off, preventing them from attacking the body’s healthy cells. Immunosuppressive medications are used to treat severe lupus symptoms and help prevent organ damage by reducing the immune system’s overactivity.
There are a number of immunosuppressants that can be used to treat symptoms of lupus. These include mycophenolate, azathioprine, and cyclosporine.
Cyclosporine is typically reserved for cases where other immunosuppressants are less effective, as it can impair kidney function and raise blood pressure. It may also cause hyperuricemia (a buildup of uric acid in the blood), which can lead to gout — a condition that causes joint swelling, often in the big toe.
A more common side effect of cyclosporine is swelling in the feet, ankles, lower legs, or arms. If you notice swelling while taking cyclosporine, consult your doctor. Adjusting your dosage may help relieve this symptom.
Swelling in the feet and ankles isn’t always a side effect of medication. In some cases, it can be a symptom of lupus itself or related conditions. Lupus can cause edema in the feet and hands, or around your eyes. Inflammation from lupus can also lead to tissue damage, which can show up as swelling, pain, and stiffness in the body. Swelling can be a sign of a lupus flare.
Swelling in the legs, ankles, and feet can sometimes be a symptom of lupus nephritis, a form of kidney disease that occurs in many people with lupus. Lupus nephritis occurs when lupus causes damage to the kidneys, leading to poor kidney function, fluid retention, and swelling. About 50 percent of people with lupus have lupus nephritis. Although swollen ankles don’t always mean you have kidney problems, it’s important to be aware of lupus nephritis, particularly because it is common and can get worse over time.
If you’re concerned that your swollen ankles might be a sign of lupus nephritis, talk to your doctor. They can diagnose the underlying cause and talk to you about the risks and other symptoms of lupus nephritis to watch out for.
Since swelling can have many causes, it’s important to discuss all your symptoms with your medical care team. Your doctor is the best resource, and together, you can find the treatment plan that works best for you.
If you’re dealing with swelling of the feet or ankles, whether from fluid retention or other causes, here are some strategies that might help manage this side effect:
Many members of MyLupusTeam have shared tips for managing foot and ankle swelling. One member said, “I prop my legs up higher than my chest, and sometimes I put cold, wet towels over my feet.” Another recommended, “Drink as much as you can and move, move, move!”
While some swelling is common with certain medications, it’s still important to notify your doctor, especially if the swelling gets worse. Let your doctor know right away if you’re experiencing swelling of the feet, ankles, or lower legs, especially if it occurs suddenly, if it only happens in one leg, if the swelling is painful, or if your leg appears pale and feels cold.
If you experience shortness of breath, chest pain, dizziness ,or fainting along with leg swelling, seek medical care right away.
If you’re unsure whether your symptoms are a side effect of medication or related to lupus, it’s always best to consult your doctor. They can assess your condition, adjust your medication dosage if needed, or switch you to a different treatment option if the swelling is severe or persistent.
Remember, never start or stop taking a prescribed medication without consulting your health care provider first. They can help you weigh the benefits of the medication against potential side effects and make an informed decision about your treatment plan.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 232,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Have you had swelling in your feet after starting or stopping lupus medication? How have you managed it? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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It is wonderful to hear from someone who doesn’t ban prednisone. When I was diagnosed 36 yrs ago, that all there was along with plaquenil. I controlled my lupus better back then and would also go in… read more
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