Humans in general are very visual – we pay a lot of attention to color, patterns, and movement. Most of society is designed around sight-based communication, including traffic signals, signboards, advertisements, books, and art. While there are accommodations for people who have their sight impaired, such as braille and screen readers, these accommodations are not always enough to navigate a world so targeted to the visual. When lupus interferes with sight, it has a huge effect on everyday life and can be psychologically frustrating for people with lupus. 

Vision problems are sometimes considered an early symptom Systemic Lupus Erythematosus (SLE) have eye-related symptoms. If patients have other telltale symptoms (for example, the malar rash and severe fatigue) that a doctor recognizes, then this can lead to tests such as the antinuclear antibody test. 

Vision loss is often painless, and if caught quickly can potentially be treated with medication. Usually, however, when vision problems appear alone, the priority is to adjust vision with glasses and other external fixes. If you have been diagnosed with lupus and start to have vision problems, however, this is recognized as a sign of increased, severe lupus activity. In fact, Eye disease is often associated with high levels of inflammation, so it’s important to have these issues diagnosed and treated as soon as possible.

What is Vision?

The sense that we call vision is actually two different processes – the detection of light by the eye and the heavy processing and categorization that happens in the brain. All senses require the brain to interpret those sensations to a degree, based on what you know about the world. However, there is so much visual information – including color and depth perception – that the brain has to take more shortcuts than with other senses to cut down on energy and processing speed. We actually don’t see exactly what is in front of us like a camera recording or a computer – we ‘see’ in categories and shapes, which speeds up our ability to perceive and react to the world. What this means is that, if lupus damages or compromises any part of the system – the eye, the brain, the nerve the connects them, or the blood vessels that feed these organs – it can have major effects on vision. 

How Does Vision Work?

Eyes are specialized organs that detect light and transmit that information to the brain. The brain then interprets the light signals into what we perceive as vision. Humans generally have two eyes, which is important to how we determine depth and dimension. While we can still see with one eye, depth and distance become harder to judge, which can make it dangerous to perform activities that require quick reactions and precision, including driving.

Step 1: Light Enters the Eye

The human eye is a complex organ that works a lot like an analog camera – most of the eye is opaque, protected from dirt and scratches by an outer layer called the cornea, which is kept clean and in good condition by constant moisturizing through tears. The opaqueness of the eye means that extra light is not let in. 

The sclera is the protective outer coating of the eye, which in humans is white and full of blood vessels, and inside the eye, there is a clear fluid called vitreous humor which helps to bend the light and allows the eye to maintain its shape through pressure. This is important, because if the eye shape is off, it can affect how well the eye can focus on details. This is a common cause of near- or far-sightedness.

The first step of vision starts with light travelling through the cornea, a clear, thick, curved area in the front of the eye that bends and focuses the light. The light then enters the eye through an opening called the pupil, and then passes through the lens. The pupil, cornea, and lens allow the eye to focus on details, adapt to different levels of light in the environment, and protect the sensitive cells at the back of the eye from damage. The amount of light let in depends on the environment – in dim light conditions, the pupil is widened (or dilates) to let in more light, while in bright light the pupil contracts to a tiny dot. It is also affected by stress, fear, and other emotions – energetic emotions such as excitement, fear, aggression, or arousal cause dilation, while calmer emotions are associated with constricted, smaller pupils.

Step 2: Light Receptors in the Retina React

The cells at the back of the eye are special cells that react in response to certain wavelengths of light. There are millions of these cells in the back of the eye, arranged in a two-layered sheet called the retina. The retina consists of color-detecting receptors called cones and light detecting receptors called rods. There are three types of cones, detecting low energy red light, medium energy green light, and high energy blue light. These receptors are triggered in different amounts, which we then interpret as the rainbow of colors around us. Other receptors called ‘rods’ are very good at detecting light and dark. They are able to detect dim light and are responsible for allowing us to see in the dark – though night vision is generally without color.

Step 3: Information is Transferred to the Brain and Processed

These cells transmit their information through a nerve bundle called the optic nerve, the connection from the eye to the visual cortex in the brain. The optic nerve is not the longest nerve in the body, but it still has a long way to carry its information – all the way to a region called the “occipital lobe” which is all the way in the back of the head! There, the information is processed, and our brains categorize what we see into shapes, types of objects, and other classifications. This is both how we see, and how we understand what we see. 

This means that sight is a complicated teamwork between the structures of the eyes, the optic nerve, and the brain. This ‘teamwork’ can degrade with age but also with extreme exposure to powerful light (including long term use of bright screens) and head trauma.

Inflammation caused by lupus can affect any stage of the vision process. When serious, it can cause loss of vision or even blindness if not caught and treated early.

Other Eye Symptoms of Lupus

Although the results are the same – pain, deterioration of vision, or loss of vision – and inflammation is generally the cause, the actual source of the symptoms can vary. 

There are many ways that lupus effects the eyes. Lupus can cause inflammation and damage to the outer layer of the eye (scleritis), the muscles that move the eyes (including the iris itself,) and the iris. It can also affect the nerves that control these muscles. Cutaneous lupus around the skin near the eyes, the eyelid, or the face in general can also effect vision. Keratitis, or inflammation of the cornea, is more direct. It affects the cornea, which is the layer that protects the eye. Inflammation causes the area to become irritated and sensitive, blurring vision both from the inflammation and the increased production of tears.

Lupus retinopathy and dry eye the most common eye related symptoms of lupus.  Retinopathy is when the retina, the back of the eye with all of the receptors, is damaged. The receptor cells die, reducing the amount of light and detail that the eye can detect.

Dry eye is exactly what it sounds like. Lupus that affects the tear glands and tear ducts can also interfere with vision as the eye dries out. Dry eye is a common symptom of lupus and certain other autoimmune diseases such as Sjogren’s Disease. The lack of tears means that the eye can’t clean out dirt and debris as effectively, allowing the eye to be scratched and damaged more easily. The loss of the tear layer also exposes the eye to damage from drying out and to bacteria that are better able to get a foothold in the eye and cause damage of their own. Rarely, lupus affects the eyeball itself.

However, the eyes do have a level of protection from the immune system, much like the brain and reproductive organs. So, the most common cause of vision loss is restricted blood flow due to vasculitis. Vasculitis is when inflammation from lupus constricts the blood vessels providing various parts of the vision system with oxygen. This starves the organ of vital oxygen and makes them unable to do their jobs – even potentially permanently damaging them. The constriction of blood vessels due to lupus is called vasculitis. 

The optic nerve and brain can both also be affected by lupus inflammation or vasculitis, effecting how the information from the eye is transmitted or processed.

Lupus Medications and the Eye

Lupus medications, including steroids and antimalarials are a major part of lupus treatment, but also are known to cause damage to the retina. Steroid medications raise the pressure in the eye and can also lead to cataracts. People on steroid medications, especially hydroxychloroquine (HCQ) should get their eyes checked often.

Alternate treatment options are sometimes used when doctors feel that it’s appropriate.  If someone with lupus starts getting eye-related symptoms, then they should talk to their treatment team about changing their medications to try to avoid the damage.

Other lupus medications are effective though, as are treatments that reduce inflammation overall, such as diet, exercise, and alternative therapies. Other medications for lupus, including the chemotherapy drugs bevacizumab, rituximab, and belimumab, are also useful. Anticoagulants (such as blood thinners) can directly prevent the vasculitis from causing more damage.

A Lupus Warrior’s Takeaway

If you start noticing eye-related symptoms, including sensitivity to light, it’s a good idea to get checked as soon as possible. Case studies have shown that, the sooner these problems are caught, the more likely it is that you can avoid permanent vision loss. 

You can read more about the eye and lupus here.

The signs of inflammation-related anemia, or “anemia of inflammation,” can show up throughout the entire body as the brain, organs, and other body tissues receive insufficient oxygen. The symptoms of anemia can range from uncomfortable to dangerous and even life-threatening.

Symptoms of Inflammation-Related Anemia

Anemia deprives the body of oxygen, which all of the cells in your body use in the process of turning carbohydrates and fat from fuel into the energy. When there are not enough healthy red blood cells carrying oxygen to your organs and tissues, your body is forced to work with less. This causes the following symptoms:

• Fatigue and lack of energy
• Headaches and dizziness
• Difficulty thinking clearly
• Lower stamina during exercise, more muscle pain, and longer recovery time after exercise
• Shortness of breath
• Pale skin

While treatment of inflammation-related anemia is possible, it is not always prioritized by lupus treatment teams. Clinicians often prioritize the health of organs, which is crucial but can lead to people living with anemia symptoms.

The symptoms of inflammation-related anemia in lupus can mask other symptoms of SLE and can get in the way of lupus treatment and a healthy lifestyle.

Anemia can also be an important sign of dangerous SLE symptoms, such as internal bleeding, or serious inflammation damage of the organs. Of particular note, anemia caused by kidney damage can inhibit the body’s ability to filter the blood properly. This can leave toxic waste products to float around in the blood stream.

In general, people with lupus-related anemia were found to be more sensitive to light and to have more kidney problems. Organs besides the kidneys can also be involved and may provide clues for the optimal lupus treatment methods.

Lupus and Anemia

A study published in the European Journal of Rheumatology found that of the people they tested, over 50% of people with systemic lupus experienced anemia as a symptom. Systemic lupus damages organs throughout the body, including the organs responsible for blood production. These organs can include the:

• Bone marrow
  • Produces red blood cells
• Spleen
  • Stores red blood cells
• Liver
  • Filters toxins from the blood
• Kidneys
  • Filter toxins from the blood
  • Produce erythropoietin, a hormone that encourages the production of red blood cells.
• Gut
  • Absorbs iron, a key component of red blood cells

Macrophages and Anemia

In addition to impacting specific organs, lupus alters the effectiveness of the immune system as a whole. One way it does this is by reducing the number of macrophages. Macrophages are white blood cells that “eat” & destroy bacteria and damaged red blood cells. Fewer macrophages can lead to an increase in unhealthy and damaged red blood cells circulating in the body.

On the other hand, during symptom flare-ups, the immune systems of people with SLE can become turbocharged and end up attacking healthy red blood cells. If they attack too many red blood cells, then there is not enough for the body to use, leading to anemia.

Lupus, Anemia, and You

Fortunately, anemia – regardless of cause – is very treatable on its own through:

Medications

If the cause is unknown or isn’t treatable, then synthetic erythropoietin, the hormone that causes the bone marrow to produce more red blood cells, may help. Injected directly into the body, medications that use synthetic erythropoietin (such as EPO and Abseamed) help spur the body into producing more red blood cells on its own. These medications reduce the anemia symptoms and may help with other lupus symptoms.

These medications do have some potential side effects, however, such as high blood pressure, swelling, fever, dizziness, nausea, and soreness. Synthetic erythropoietin also does not address the underlying issues, such as organ damage, and might cover up the problems. As with all medications, talk to your lupus treatment team about synthetic erythropoietin to see if it is the right choice for you.

Supplements

If medication is inappropriate, or if the cause of the anemia is the poor absorption of nutrients into the body, then injections of iron, vitamin b12, and folic acid may be helpful. These nutrients are key components to building and maintaining red blood cells in the body, and supplements of iron, vitamin b12, and folic acid increase blood production by ensuring that the body has enough raw materials.

A diet rich in these vitamins and nutrients, along with dietary supplements can also help. Talk to a nutritionist on your lupus treatment team to help figure out meals and vitamins/supplements, that may be beneficial.

Blood Transfusion

For very severe cases of anemia, the best way to take care of it may be not so much producing more of your own blood, but getting an infusion of someone else’s blood. A blood transfusion will give you all of the blood components that you need and will help you build up a healthy level of blood.

Side effects are generally minimal, but for many people with lupus this is only a short-term solution to keep them out of dangerous levels of anemia, give them time to find and treat the underlying cause of their anemia, or until they figure out the right treatment for their anemia.

Some people with lupus, however, may find that blood transfusions are their only, or primary, choice.

Want to know more about lupus and inflammation-related anemia?

Anemia might not be the only thing causing fatigue — find out how you can manage your lupus fatigue in this article.

Kidney damage is a major contributor to lupus-related anemia, and there is a type of lupus, lupus nephritis, that specifically attacks the kidneys. Learn more about it here.

Other types of anemia that can come with lupus: Hemolytic anemia is a lupus symptom that involves less-resilient or more easily damaged red blood cells. Read more about it in our article here!

Methotrexate, an immune-system suppressant and cancer chemotherapy drug used to treat leukemia and some types of arthritis, may lead to or exacerbate organ damage and anemia. Read more about it here.

Systemic Lupus Erythematosis (SLE) is a chronic disease where a person’s immune system attacks their own cells, a process known as “autoimmunity.” SLE has the potential to inflame and cause problems in any organ in the body, including the joints, but also the kidneys, the gut, the heart… and, also, the brain.

Many people with lupus are familiar with brain fog, a condition where their thoughts feel “foggy,” “fuzzy,” and sluggish. Seizures and sensory system symptoms of lupus, such as loss of eyesight or hearing, are another result of lupus affecting the brain and nervous system. Lupus can also affect the heart and circulatory system, which changes how well blood can flow to the brain. This leads to headaches and increased risks of stroke, and also indirectly causes issues in the brain. Anxiety and depression are well-known to be caused by both the stress of lupus symptoms and the effects of lupus on the brain. You can read more about neuropsychological symptoms and lupus, here.

For 3-5% of people with lupus, however, brain symptoms manifest as psychosis, disturbances in a person’s thoughts and perceptions of the world that disconnect them from reality.

What is Lupus Psychosis?

Lupus Psychosis is a type of psychosis, which is a general term for a collection of symptoms that include false beliefs, or delusions, and false sights, sounds, and smells, or hallucinations. Garbled or “word salad” speech, strange behaviors, and inappropriate responses to social situations can also be a part of it. A person with psychosis might also experience:

• insomnia
• a lack of motivation
• withdrawal from friends and society, often as a coping mechanism

Lupus psychosis generally happens within the first three years after SLE diagnosis. While intense and awful to experience, psychosis is also very rare:

In a 2008 study in the journal of rheumatology, 485 people with lupus were studied. Of these 485 people, only 11 of the patients (2.3%) were diagnosed with lupus psychosis. Psychosis was was associated with biological markers, through blood tests or other means, activity in 90% of cases.

Psychotic episodes often occur as periods of intense symptoms, with stretches of more normal brain function in between. In many cases of lupus psychosis, these episodes can coincide with flares or with the onset of specific lupus symptoms, like skin lesions.

Antipsychotic medications are generally prescribed to reduce the frequency and intensity of the psychotic episodes. These medications can make the symptom more manageable.

In a 2008 study, all patients experiencing lupus psychosis were treated with corticosteroids. After a follow up period of an average of 155 months, most of the patients experienced a decrease or remission, of their psychosis symptoms. Few people experienced long-term psychotic symptoms.

In about 80% of cases, the psychosis abates by next time a person is assessed. This makes it a brief, extremely stressful, time in a person with lupus’ life.

How is Lupus Psychosis Treated?

The treatment for lupus psychosis is a mixture of antipsychotic medications to treat the symptoms and lupus medications to treat the cause. Corticosteroids, like prednisone, and immune system suppressing (immunosuppressant) medications will reduce the symptoms of lupus. This leads to less inflammation in the brain, which will help reduce the symptoms of psychosis. So, in most cases, not much changes in the regimen, except for the addition of antipsychotics.

Can Lupus Medications Cause Psychosis?

Psychosis is one of the neuropsychiatric manifestations of lupus, but it can also be a side effect some medications. In general, lupus psychosis is different from drug-related psychosis. Instead, it is closer to diseases like schizophrenia. These types of diseases are related to brain structure or damage and are treatable with medications.

Some medications, including prednisone have been shown to cause psychosis as a toxic side effect. However, this is a rare side effect. These treatments are more likely to do good than harm for a person with lupus. But, always speak with your lupus treatment team immediately if you are experiencing significant side effects of treatments.

How Do You Diagnose Psychosis?

A psychologist can diagnose psychosis, but close friends and family may be able to help spot the symptoms. Until getting an official diagnosis and treatment, these friends and allies can help ground people experiencing psychosis, connecting them to reality and making sure that treatment can happen safely.

Systemic lupus erythematosus (SLE) is an autoimmune disease that affects organs throughout the body. The eye is usually an “immune-privileged” organ, which means that it is safe from the immune system and highly resistant to inflammation. However, autoimmune disease can overwhelm this resistance and attack various parts of the eye.

Eyes require constant lubrication to function, generally by producing a liquid known as “tears.” Tears are produced by Lacrimal glands above the eye. Blinking spreads these tears across the eye and moves old tears into the corner of the eye, where it either drains down the face, or into the nasal passage. When SLE damages the tear ducts or tear glands, it can lead to a condition called dry eye. The damaged tear glands either don’t produce enough tears, or, alternatively, produce tears that don’t properly lubricate or clean the eye.

Dry eye is, as the name describes, an uncomfortable dryness of the eyes, resulting in a stinging, burning, scratchy sensation in the eyes, and the constant feeling that there is something in ones eyes.

Other symptoms of dry eye include:

• Mucous around the eyes
• Watery eyes and blurred vision
• Eye fatigue and poor night vision

It should be noted that dry eye is not just uncomfortable. It can damage the eye and also make eye infections more likely.

Doctors can use the Schirmer test as a way to diagnose dry eyes, especially in milder or early cases. A small strip of sterile paper is placed under the eyelid. The paper is removed after 5 minutes and the wetness of the paper is measured – if less than 5mm of the paper is wet, then this is abnormal and there is decreased tear production.

Dry Eye and Sjogren’s Syndrome

As many as 1/3 of people with lupus also have dry eye syndrome. Some of these patients may also have Sjogren’s Syndrome.  Sjogren’s syndrome is an autoimmune disease that sometimes happens alongside lupus, which attacks the salivary glands in the mouth and the lacrimal glands in the eye, causing dry mouth and dry eyes. The damage is permanent, but it can be controlled with lifestyle changes and medication.

Dry eye can also occur independently and completely due to SLE. This was confirmed by an analysis of 49 SLE patients who did not have anti-Sjogren’s syndrome antibodies and had no dry mouth symptoms. All of the patients had dry eye and lupus involvement, but no evidence of Sjogren’s syndrome.

Diagnosing and Treating Dry Eye

The environmental conditions can effect the eyes of people with lupus, such as dryness, humidity, and light levels. Cold weather in particular can cause dryness in the eyes, and make dry eye worse.

Dry eye can be treated by also treating lupus, which stops the body from damaging the tear ducts further and enables these important organs to heal. However, dry eye can also be treated by:

• Avoiding dry air sources like hair dryers, heaters, air conditioners, and fans.
• Use humidifiers to add moisture to the air, which can prevent the eyes from drying out too fast.
• Limit computer time, as blue light from screens can make eyestrain worse.
• Artificial tears can be used to keep the eyes moist and clean.

Researchers have known for decades that people with systemic lupus erythematosus (SLE,) the form of lupus that affects organ systems throughout the body, were at higher risk of cardiovascular disease. 50% of people with lupus will experience some form of heart or circulatory system complication in the course of their chronic disease, about a 13-15% higher risk over 10 years compared to the general population. 

Cardiovascular (CVD) complications in the heart, lungs, and brain are one of the most common complications of lupus. Typically, CVD symptoms are treated with lifestyle changes (exercise, diet , avoiding alcohol and tobacco , among other therapies) and with medications. NSAIDs such as aspirin (which also has a blood thinning component,) and other lupus medications reduce inflammation and, in the process, reduce all symptoms of lupus – including cardiovascular. Warfarin, a powerful blood thinner, may be used in some cases. There are also medications that regulate heart rhythm or inhibit enzymes that would normally control the heart rhythm. In certain cases, a pacemaker might be installed to zap the heart back into the correct rhythm.

Lupus affects the cardiovascular system in many different ways. It can directly impact the heart, lungs, blood vessels, and even the mechanisms that the body uses to regulate its metabolism, bloodflow, and blood pressure. Here are some of the heart-related symptoms of lupus that can result.

Pericarditis

Pericarditis is one of the most common heart-related symptoms of lupus. Lupus causes pericarditis when it inflames the walls of the heart, which have two layers that hold fluid between them. When it works properly, the pericardium protects the heart and large blood vessels and acts as a lubricant to protect the hard-working organ from damaging itself. When inflamed, pericardial effusion can build up in between these layers, swelling the pericardium with too much fluid. This puts pressure on the heart as the tightened layer makes it more difficult for the heart to expand, contract, and pump correctly. This overabundance of fluid can also become a target for infection, which can damage the heart muscle and other tissues further.

Myocarditis and Valve Abnormalities

Lupus can also attack the heart muscle and the attached blood vessels directly, causing inflammation in the muscle tissues of the heart (myocarditis) and damage to the heart valves. Damage to the heart muscle interferes with heart contraction. The heart will often enlarge to attempt to compensate, but it will get to a point where it cannot pump blood effectively. The rhythm of the heart can also be affected, leading to an irregular (and inefficient) beat, an uncoordinated beat, or a sped-up heart that is vulnerable to other issues. Other complications of lupus, including kidney symptoms from lupus nephritis and hypertension can make myocarditis worse. 

Meanwhile, damage to the heart valves leaves abnormalities that can restrict bloodflow into or out of the heart, or an improper seal that allows blood to ‘leak’ back into the blood vessels it came from, causing the heart to pump less efficiently. Abnormal heart valves can develop growths which might break off and cause clots or blockages elsewhere in the circulatory system such as the brain or lungs.

Atherosclerosis

Atherosclerosis is one of the leading causes of heart attack and stroke and is directly caused by lupus damage. Atherosclerosis is accelerated in people with lupus for several reasons:

1: In lupus, the immune system damages and weakens the walls of the arteries. This stresses arteries and makes them ‘rougher’, which creates places where plaques can form more easily. These plaques can grow and block blood vessels, cutting off oxygen supply to vital organs. 

2: Kidney disease caused by lupus can damage the circulatory system as toxins and excess water and salts are not removed as effectively. This stresses the entire system, making it easier for atherosclerosis to form.

3: Steroidal medications, often used to control lupus and reduce flares, causes increased atherosclerosis formation. It encourages fluid and sodium retention, leading to high blood pressure and increased strain on the system. It also triggers the body to thicken and stiffen the walls of arteries and the heart’s ventricles, making them less flexible and able to expand and contract as-needed.

These CVD symptoms can happen to anyone with lupus, including lupus that is more focused on the skin or kidneys.

Cutaneous Lupus and Cardiovascular Symptoms

However, a new study revealed that people with skin manifestations of lupus, also known as cutaneous lupus erythematosus (CLE), with or without a diagnosis of SLE, also had high rates of cardiovascular disease. These people were also, the research notes, significantly undertreated and undiagnosed for these complications. 

This implies that many people with primarily skin-related symptoms might have their more inner system symptoms ignored or overlooked, and doctors should look more closely for additional symptoms of lupus such as high blood pressure (hypertension) and higher risk of heart attack and stroke.

This 2023 study by the University of Pennsylvania assessed the medical records of 370 people with CLE. They found that 67.3% of the patients (249 people) had above-average levels of low-density lipoproteins (LDL, also known, colloquially, as ‘bad cholesterol,’). They also assessed the rates of smoking, diabetes, hypertension, and other related conditions (such as prediabetes and hyperlipidemia). 

Disturbingly, while 71.9% of the patients in the study had hypertension, most (74.4%) were not being treated effectively or at all.

A Lupus Warrior’s Takeaway

On one level, the study’s result is not surprising – people with lupus are well known to have more risk factors, environmental and otherwise, for heart disease.  People with lupus also often face medical misdiagnosis and, due to many factors, frequently experience having their symptoms ignored or downplayed until they become severe. The fact that the undertreatment of one of the most common complications is extended to people with an existing diagnosis of lupus is concerning. Hopefully, this study sheds light on this problem will push medical professionals – and teachers – to catch the cardiovascular symptoms of lupus and treat it.

Lifestyle Changes, Obstacles, and Lupus

It is also important to remember that lifestyle change can actually be very difficult for a patient to accomplish.

The pain and fatigue of lupus can sometimes make heart-healthy lifestyles difficult, sometimes nearly impossible, to implement. Skin sensitivity to sunlight (and UV light in general) can make it difficult to find a safe time to go outside. Immunosuppression from lupus and its medications may make going out to a public place or a gym very risky – read more about how to stay safe when immunosuppressed here. And, of course, that assumes that the neighborhood itself is safe or conducive to walking or exercising in! You can read more about these social determinants of health here. 

Mouth and stomach symptoms can make it difficult to eat heart-healthy or anti-inflammatory food. Said food, which often requires a person to acquire and cook with fresh, whole ingredients, might not be accessible for that person due to its price or their location in a food desert or rural area. Without support from their community, friends, and doctors, it is very hard to overcome these obstacles. 

However, this new study brings additional awareness to the risks that people with CLE face, and may improve treatment by medical professionals, both personally and medically.

Systemic lupus erythematosus (SLE) is an autoimmune disease that effects organs throughout the body. A common and frustrating symptom is swelling in the joints and extremities which causes pain, discomfort, and can be a blow to the self esteem of a person with lupus. Often, this is actually bodily fluids, mostly water, that the body is holding onto for some reason. It is not unusual for the body to leak some excess fluid – which is not blood but can have some blood particles in it – into the surrounding tissues.  Usually, these fluids are reabsorbed or moved elsewhere in the body by the lymphatic system. However, sometimes conditions in the body or in the bloodstream cause the fluid to stay in the tissues of the body. This is known as fluid retention. 

Fluid retention in the limbs is often very visible, but there are other symptoms to look out for when it is more subtle. 

• Tightness of the skin 
• feelings of fatigue or tiredness
• feelings of strain on bones, ligaments, and joints
• difficulty breathing
• difficulty swallowing
• irregular urination
• weight gain

It can also exacerbate cutaneous lupus as the body tries to remove the excess fluid by pushing it through the skin, creating a moist environment that can lead to skin infections,  worsen lesions, and make medications less effective. Read more about preventing infections with lupus here. 

Swelling  – also known as ‘edema‘ – that is related to fluid retention can also show up in other parts of the body, such as the eyelids or abdominal area. The skin can seem stretched and shiny, over puffy or swollen areas. Usually, this occurs in the extremities, but it can occur in the face, eyes, and stomach. Sometimes, the skin above the swollen area will retain its shape when pressed, known as pitting. 

Swelling can have a serious effect on self-esteem and body image, but it also can damage nerves, tendons, and joints in the effected parts if the pressure is too much.

What Causes Fluid Retention?

Fluid retention can be a symptom of lupus nephritis. The kidneys are responsible for filtering the blood and keeping the right balance of fluid, salts, unable to do their job properly of filtering and balancing the proportions of water, salts, red blood cells, and the many other substances that are a part of blood. They also help to control blood pressure by monitoring the blood and controlling the production of certain hormones. When the kidneys are damaged, excess fluid isn’t filtered out properly or released to the bladder and urinary tract as urine. Instead, it remains in the bloodstream. 

When there is too much fluid, the small blood vessels, known as capillaries, leak to compensate for the higher pressure and are unable to take back the fluid. The excess fluid will stay in the bodily tissues themselves, causing them to swell. You can read more about diagnosing and treating lupus nephritis here. Gout, which can be caused by lupus nephritis, also causes pain and swelling in the joints and, especially, in the feet as uric acid builds up in the body.

Too much fluid in the body leads to high blood pressure, as well as swelling in areas where gravity makes it more difficult to move fluid around the body, such as the legs, ankles, and feet. Swelling can be painful, make it difficult to move, and put pressure on joints, enhancing lupus symptoms already present. Read more about pain and lupus here. 

Fluid retention and swelling can also be a potential symptom of cardiovascular issues, where the circulatory system can’t keep up. If the heart isn’t strong enough to circulate all of the fluid in the body, excess fluid can accumulate in the extremities, particularly the feet and legs, causing swelling. Read more about cardiovascular disease and lupus here. 

The lymphatic system, which is an integral part of the immune system, can also cause fluid retention when it fails to reabsorb and redistribute fluid. 

Pregnancy, low physical activity due to mobility issues, and being overweight can also put stress on the circulatory system and make fluid retention and swelling worse. Some medications, including birth control pills and certain lupus medications can also cause fluid retention and swelling.  It might also be a good idea to check with your doctor about whether your medications are encouraging fluid retention and swelling. Predisone in particular is notorious for causing swelling, as well as other side effects. Heat can also make it worse, as can natural hormonal cycles.

How to Reduce Fluid Retention

Changes to diet and one’s lifestyle can help reduce fluid. In particular, eating foods with high salt or sugar content can cause the body to hold onto water more readily. So eating a healthy, balanced diet low in salt and sugar – added or otherwise – will help. Fruit juices, while a source of water and important vitamins, are often too sugary on their own. Cranberry juice is an exception, as it encourages urination and can help clear out infectious bacteria in the bladder and urinary tract. It is also a great source of vitamin C, vitamin E, and other antioxidants. Some of these antioxidants, called proanthocyanins, end up in the urine and can help cleanse the bladder. 

Cranberry juice is astringent, and many brands add sugar to adjust the taste – if you are avoiding sugar, only choose brands that don’t add sugar. Also, talk to a doctor before drinking cranberry juice if you are taking blood thinners. You can read more about why people with lupus should cut back on sugar here. 

Rest, regular cardio-strengthening exercises, and mobility exercises such as yoga can also help the body better regulate its fluids. 

Ironically, increasing your water intake can bring down fluid retention, possibly because proper hydration helps everything in the body run better overall, or it helps encourage urination and clear out excess salts and sugars in the bloodstream. Caffiene, on the other hand, is a bit of a mixed bag, as it can encourage urination but also can cause dehydration if you take in too much of it. 

Exercise, particularly walking, leg lifts, and other mobility exercises, helps to encourage proper blood flow, and there are many other additional benefits.

Platelets are cells in the bloodstream that clump together on injury to prevent bleeding. Platelets are produced in the bone marrow and are found throughout the body. In people with high levels of inflammation in their body or cardiovascular issues, they can also clump together in the blood vessel itself and block blood flow.

Many people with systemic lupus erythematosus (SLE) have low platelet counts, a condition also known as thrombocytopenia.

The condition of thrombocytopenia is defined as a platelet count of less than 150 x 10³ per microliter of blood. Symptoms of low amounts of platelets in the body include:

• Wounds that bleed too much  for too long
• Enlarged spleen
• Heavy menstrual flows
• Fatigue
• Easy bruising with large and dramatic bruises, also known as purpura
• Bleeding without injury in delicate areas such as the gums or nose
• Tiny reddish-purple spots called “petechiae” that cluster on the skin like a rash

Most of the time, thrombocytopenia isn’t even suspected until a routine blood count test discovers it. When thrombocytopenia shows up early, the SLE symptoms will often become severe, with potentially worse outcomes. It’s not a sure thing, but it does make platelet count worth keeping an eye on for people with lupus. However, many people with lupus have some sort of blood issue, either thrombocytopenia or anemia. 

Causes of Thrombocytopenia

The causes of low platelet count can be from disease or from medication. These causes lead to:

• Swelling of the spleen
  • The spleen processes blood cells including platelets. When processing slows, swelling occurs.
• Slowed production of platelets
  • Platelets are produced in the bone marrow. Production can slow below the rate at which cells are lost everyday, leading to low platelet counts
• Due to conditions in the body, platelets are destroyed at a higher rate than usual.

Lupus, like all autoimmune diseases, is a condition defined by the immune system misidentifying and attacking the body’s health cells. This can include platelets.

Not all people with lupus produce platelet-specific antibodies, also known as anti-GPIIb/IIIa and anti-TPOR antibodies. However, these auto-antibodies can trigger the body to attack and destroy platelets. These antibodies can be detected through antibody profiles and blood tests, so thrombocytopenia can be predicted. 

SLE activity in the spleen and bone marrow can cause low platelet counts, and can affect the bloodstream, too, and that will also influence the platelet counts. Along with anemia and leukopenia (low white blood cell count), thrombocytopenia is a common symptom of lupus. Lupus can also cause inflammation throughout the body which can cause anemia and clotting, which both reduce platelet counts.

A Relationship Between Lupus and Platelets?

Interestingly, platelets may have revealed a new target for treating lupus. Recent research found that people with SLE have high amounts of mitochondrial DNA in their bloodstream.

Mitochondrial DNA is the DNA found in the mitochondria, which are the part of the cell that is responsible for breaking down simple sugars and producing energy, among other things. How mitochondria or its DNA affects lupus is unclear. However, high amounts of it in the bloodstream often go along with a clotting problem. It is also generally known that the mitochondria work improperly in autoimmune diseases, and it may have to do with the genetics of the mitochondria.

Although the relationship between autoimmune disease and mitochondrial DNA is unclear, platelets may be key to figuring it out.

Treating Low Platelet Counts and Lupus

In an emergency, platelets can be added to the body through blood or platelet transfusions. However, more long-term thrombocytopenia treatments include both medications and surgery, and it has some overlap with lupus treatments in general.

Corticosteroids are first-line treatment for autoimmune thrombocytopenia, as are monoclonal antibodies like rituximab and azathioprine (which are all used to treat lupus in general). Intravenous gammaglobulin is a treatment specific for thrombocytopenia, and removing a swollen spleen can relieve the platelet problem, too.

Notably, Non-steroidal anti-inflammatory drugs (NSAIDs) can cause an inability to clot and can lead to internal bleeding. These should be discontinued unless a doctor approves them. Alcohol use also makes both thrombocytopenia and lupus worse, so reducing alcohol consumption can be way to treat the condition.

“This article is a featured contribution from Tanya Freirich. Tanya Freirich, MS RDN LDN CDCES, is a Registered Dietitian specializing in helping those with Lupus and other autoimmune diseases feel their best through changes to diet, nutrition and lifestyle.”

The butterfly rash or malar rash is the most famous skin rash of Lupus. It’s appearance can be very subtle, very severe, or anything in between. If mild, the malar rash may be more difficult to diagnose in people with darker skin tones. The vast majority of people that present with the malar rash (>95%) have underlying SLE (Systemic lupus erythematosus). 

In addition to the malar rash, Lupus can affect the skin as subacute cutaneous lupus (circular rashes on the chest, neck, back and arms) or Discoid Lupus (can cause permanent scarring). About 15% of people with Discoid lupus may go on to develop SLE. 

The best ways to prevent skin flare-up’s are to stop smoking, protect yourself from UVA and UVB exposure and reduce underlying inflammation. 

Smoking not only worsens Lupus related skin rashes and flares, but also negatively affects heart health and Raynaud’s, increases the risk of respiratory infections and high blood pressure, and slows wound healing. Discuss with your health care provider smoking cessation programs that may work for you. 

Especially during the summer months, it’s important to protect yourself from UVA and UVB rays. While an obvious source is the sun, you can be exposed to these rays by fluorescent lights, old TV’s and within 6 feet of sunlight coming through a window. Many people with Lupus are photosensitive and have increased Lupus disease activity after UVA and UVB ray exposure.  

If you need to be outside, use UPF clothing, sun hats and mineral sunscreens to protect yourself. Mineral sunscreens are preferred to chemical sunscreens as many chemical sunscreens contain ingredients that are endocrine disruptors. 

The root of all Lupus symptoms is an overactive immune system and underlying inflammation. Reducing inflammation from the inside out may include lifestyle and dietary changes. It’s important to discover the dietary triggers that may be worsening your Lupus symptoms.  Personalized dietary changes can reduce symptoms dramatically!

Systemic lupus erythematosus is an autoimmune disease, which means that its symptoms are tied to the immune system and inflammation. One of the many symptoms of SLE can be serositis. 

Serositis is what happens when inflammation and excess fluid buildup in parts of the body called serous membranes. Serositis occurs in approximately 12% of people with lupus, according to one study, though the number may be higher. 

Serositis is a serious condition, and requires prompt treatment, but it is also very treatable and can relatively easily be sent into remission when caught and taken care of.

What are Serous Membranes?

The serous membranes are a layer of cells inside the body that line and protect the inside of hollow, sealed areas such as the body cavity and the outer areas of the organs. This membrane, about two layers of cells thick, produces a fluid in between those layers that protects the organs and allows them to move smoothly around the body without friction or damage by lubricating them. 

The serous membranes around the organs also assist them in their particular functions: For example, lung serous tissue allows the lungs to better respond to changes in pressure in the body cavity. This is important because our breathing can only happen if the pressure in the body cavity can change, drawing air into the lungs. 

Serous tissue protecting the heart, however, is more about reducing friction on the hard-working organ as it continuously beats, pumping blood through the body. When the serous membrane of the heart is damaged, it becomes inflexible, and the heart is less able to beat correctly. When the inflammation around the stomach, intestines, or other organs in that area are inflamed, these organs can be affected, leading to problems with digestion, fluid retention, appetite, and kidney function. People with lupus are already more prone to getting cardiovascular disease and having kidney problems, which can make serositis a very serious problem.

A common symptom of serositis is effusion. Effusion is the buildup of fluid in the serous membranes. The membrane swells to hold this bubble of fluid. Because space inside the body is limited, this fluid presses against the organs, giving them less space to work and compressing them. This interferes with the function of those organs in many ways. In particular, though, when it happens to the lungs, the fluid takes up space in the lungs and restricts breathing severely.

Because the serous membranes protect the inside of the body and the surfaces of the organs, it has contact with the protective aspects of the immune system. The fluids of the serous tissue have a lot of immune system cells present, and when inflammation is high, there are even more cells. 

How is Serositis Detected?

Usually, you feel it first. Serositis can be painful, and its other symptoms – shortness of breath, nausea, fatigue, swelling, and fever among others – are very noticeable. The fluid buildup from serositis will show up on a chest x-ray, CT-scan, ultrasound, or electrocardiogram. From there, the doctor may remove some of the fluid and analyze it. Usually, they do this if it is in an easily accessible organ, such as when it occurs in the serous tissue around the heart (peritonitis) or the lungs (pleuritis.)

How is Serositis Treated?

Serositis in lupus is treatable, generally clearing up two months after treatment.  It often does come back after going into remission, however, so patients need to be vigilant. Remission is good. Lupus, as well as many of its symptoms, cannot be cured completely, but can be brought down to low or nonexistent levels for years. 

The fluid that builds up has to be drained to make sure that the lungs can inflate and breathe. The tissues that have been damaged by inflammation may need to be removed as the inflamed tissue can ‘scar over’ into rough-textured tissue. This “fibrinous” tissue can cause strain on the organ and on the immune system. Aside from being painful, damaged serous tissue can increase the risk of blood cancers such as leukemia. Otherwise, the medications used for lupus, such as non-steroidal anti-inflammatories (NSAIDs) and corticosteroids  will also treat serositis. Colchicine, a gout medication that reduces swelling, is also used to treat serositis because it stops the fluid buildup. 

Gout, a condition where uric acid builds up in the joints of the body and causes pain swelling, and inflammation. It is different from serositis but the medication still helps.

Belimumab, according to a 2022 study, might be a good treatment for serositis, but it does suppress the immune system, leaving the body vulnerable to infections.

A Lupus Warrior’s Takeaway

Swelling can happen in other tissues of the body, too, including the joints, hands, and feet. This swelling, caused by fluid retention, is often extremely painful or uncomfortable. 

This is different from the condition known as moon face, which is caused by corticosteroid medications that are used to treat lupus. Moon face is caused by metabolism changes that lead to fat being deposited and stored in unusual areas of the body, usually the face, upper body, and abdomen. This type of “swelling” is just a “rounding” and is harmless and usually not physically painful. However, the changes in the face and body can be very damaging to one’s sense of self and mental health.

Serositis is much more serious, however, and requires immediate treatment.