When swelling isn’t just swelling.  Fluid retention is one of the more frustrating and uncomfortable symptoms for those living with lupus. Yet, it can also provide the clues to help you better understand your lupus.  Read on to find out how!

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• Introduction
• Why Fluid Retention Happens in Lupus
• Common Symptoms to Watch For
• Management and Treatment Options
• When to Seek Medical Care
• In Conclusion

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Introduction

 Fluid retention goes by many names: swelling, bloating and edema.  It occurs when excess fluid builds up in the body’s tissues often causing swelling throughout the body. It is most often noticed in the face (especially the eyes), hands, feet, ankles and abdominal bloating – areas that are visible from the outside.

However, swelling can also occur in internal organs, and though this is less visible, it can critically affect health.  Internal edema can cause difficulty with breathing, swallowing and can lead to fatigue and joint pain.

 Five Quick Facts for Those Living with Lupus:

1. Fluid retention is very common in lupus, especially during flares.
2. Swelling can be an early sign of kidney inflammation, even before lab results show it.
3. Certain lupus medications, including corticosteroids, can lead to puffy skin and swelling.
4. Sodium sensitivity is higher in people with autoimmune diseases and this can also cause swelling. Swelling can also be caused by conditions more common to lupus patients, such as diabetes, cardiovascular and liver disease.
5. Even mild swelling can signal important changes in disease activity and should not be ignored.

For lupus patients, edema is often linked to inflammation, organ involvement, or medication side effects. So, understanding why it happens, and what to do about it, can help you stay ahead of potential complications.

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 Why Fluid Retention Happens in Lupus

 Kidney Disease:  Fluid retention in lupus is most commonly associated with kidney involvement. In lupus nephritis, inflammation damages the kidneys’ filtering units, allowing protein to leak from the blood and into the urine. Proteins do many things in the blood and one of the most important is to maintain osmotic balance between it and tissues of the body.  Less protein reduces the body’s ability to keep fluid in the bloodstream, causing it to accumulate in tissues.

Since 50–60% of lupus patients may develop kidney involvement, let you healthcare providers know of any new edema symptoms as soon as possible.

Lupus Inflammation: Lupus itself can increase vascular permeability, meaning that fluid escapes more easily from blood vessels into surrounding tissue, leading to swelling internally where the inflammation takes place.

Medications:  Some drugs commonly used for lupus are another factor. Drugs like:

• Prednisone can cause the body to retain sodium and water, leading to swelling, especially in the face and abdomen.
• Nonsteroidal anti-inflammatory drugs (NSAIDs) can also affect kidney function in some individuals.

Other Medical Conditions:  Finally, there are many other medical conditions that, though not directly caused by lupus, involve diseases more common to those with lupus.  These include:

• Diabetes, which damages blood vessels and leads to poor circulation and fluid retention;
• Cardiovascular/heart disease, which is very common and can lead to edema and difficulty breathing, and
• Liver disease is rare, but since the liver is responsible for producing most of the proteins in the blood, damage to it can lead to dramatic and dangerously low levels of blood proteins, which in turn can abdominal swelling.

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Common Symptoms to Watch For

 Fluid retention may develop gradually or appear suddenly. Recognizing the signs early can make a significant difference.  Common symptoms include:

• Swelling in the feet, ankles, or legs
• Puffiness around the eyes, especially in the morning
• Rapid weight gain over a few days
• Tight or shiny skin
• Abdominal bloating

If pressing the skin creates a lasting indentation, it is called pitted edema and an indication of serious fluid retention. In more severe cases, fluid can accumulate in the lungs (pleural effusion), causing shortness of breath, or in the abdomen (ascites), leading to discomfort and pressure.

Because these symptoms can overlap with other conditions, tracking changes—such as daily weight or swelling patterns—can help your healthcare provider identify the cause more quickly.

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Management and Treatment Options

Managing fluid retention in lupus starts with identifying the underlying cause. One of the most important things is to be consistent in taking all prescribed medications.  This is helpful in two ways:  First, it may make swelling less likely in the first place, and second, if swelling does increase unexpectantly, it will be a better indicator that something other than lupus may be causing the edema.

Of course, this is even more important if you are diagnosed with lupus nephritis. With lupus nephritis, treatment may include changes or an increase in immunosuppressive medications to control increased inflammation and protect kidney function.

Other strategies include:

Dietary Changes:  Reducing sodium intake can help minimize fluid buildup. Many patients benefit from a low-sodium diet, especially during flares.

 Medications:  Beyond changes to lupus medications, other therapies for edema include:

• Diuretics (“water pills”), which are commonly prescribed to help the body eliminate excess fluid.
• Blood pressure medications like ACE inhibitors can also reduce protein loss in urine.

 Lifestyle Changes:  These include often simple changes, like:

• Elevating the legs when sitting;
• Wearing compression socks, and
• Staying physically active (as tolerated) can improve circulation.

 Regular Monitoring:  Lupus already requires constant vigilance for the signs and symptoms of flares, and fluid retention is one more that may require regular lab tests, including urine protein levels and kidney function tests, are essential for tracking disease activity.

 As always …. It is important to never change or adjust medications without consulting your healthcare provider, as fluid retention can signal changes that require medical attention.

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When to Seek Medical Care

While mild swelling may be manageable, certain symptoms require prompt attention. Contact your healthcare provider if you notice:

• Sudden or severe swelling;
• Shortness of breath;
• Chest pain;
• Significant weight gain in a short period;
• Significantly decreased urine output.

These may indicate worsening kidney function or other serious complications that require medical attention.

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In Conclusion

Fluid retention in lupus is more than a cosmetic issue – it can be an important signal about what’s happening inside your body. By understanding the causes, recognizing early symptoms, and working closely with your care team, you can better manage swelling/edema and protect your long-term health.

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References

American College of Rheumatology. (2023). Systemic lupus erythematosus (SLE) clinical practice guidelines. https://www.rheumatology.org

Anders, H.-J., Saxena, R., Zhao, M.-H., Parodis, I., Salmon, J. E., & Mohan, C. (2020). Lupus nephritis. Nature Reviews Disease Primers, 6(1), 7. https://doi.org/10.1038/s41572-019-0141-9

Kidney Disease: Improving Global Outcomes (KDIGO). (2021). KDIGO 2021 clinical practice guideline for the management of glomerular diseases. https://kdigo.org

Mayo Clinic. (2023). Edema: Symptoms and causes. https://www.mayoclinic.org

National Institute of Arthritis and Musculoskeletal and Skin Diseases. (2023). Lupus. U.S. Department of Health and Human Services, National Institutes of Health. https://www.niams.nih.gov

Parikh, S. V., Almaani, S., Brodsky, S., & Rovin, B. H. (2020). Update on lupus nephritis: Core curriculum 2020. American Journal of Kidney Diseases, 76(2), 265–281. https://doi.org/10.1053/j.ajkd.2019.10.017

Tektonidou, M. G., Dasgupta, A., & Ward, M. M. (2016). Risk of end-stage renal disease in patients with lupus nephritis: A systematic review and Bayesian meta-analysis. Arthritis & Rheumatology, 68(6), 1432–1441. https://doi.org/10.1002/art.39594

 

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Author: Greg Dardis, MS      

Professor Dardis was the Chair of the Science Department at Marylhurst University and is currently an Assistant Professor at Portland State University and the American College of Healthcare Sciences.  His focus has been human biology and physiology with an interest in  autoimmunity.  Professor Dardis is also a former President of the Board of Directors of Kaleidoscope Fighting Lupus.

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