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.

“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!

Often, the eye is not directly affected by lupus. This is because the eye is actually protected from the immune system, like the brain and reproductive organs. For the most part, eye issues in lupus are caused by constricted or damaged blood vessels, but can also involve damage to the optic nerve or the skin tissues near the eye can also cause vision loss. Lupus-caused vasculitis might be responsible for other comorbidities of lupus as well. You can read more about it here. However, sometimes lupus can be severe enough to directly damage the retina or cornea.

Eye Damage and Lupus

1/3 of people with lupus have eye-related symptoms, particularly in the cornea and retina. The cornea is the outside layer of the eye that protects it from dirt, germs, UV light, and other things from the outside world. This often shows up as keratitis, where the cornea is inflamed and causes red eye, pain, excessive tears, light sensitivity, and decreased or blurred vision. Keratosis can be treated, and reducing systemic lupus erythematosus (SLE) symptoms will also help prevent keratitis.

The retina is the layer of tissue at the back of the eye that receives light and turns it into neural impulses that are sent to the brain. Retinopathy was found in 10% of patients with lupus in a small cross-sectional study on 69 patients with SLE. Usually, the symptoms take the form of vasculitis, but lupus inflammation can also cause retinal detachment. Infections are also a possible cause of lupus-based vision loss, as the bacteria slip by the malfunctioning immune system and colonize the eye.

Early recognition by an ophthalmologist is key to avoiding vision loss. Unfortunately, steroid medications are key to treating lupus, and can induced glaucoma, cataracts, and chorioretinopathy. Other “gold standard medications” such as antimalarial medications including Hydroxychloroquine (Plaquenil,) Chloroquine (Aralen) and Quinicrine (Atabrine) which the immune system to regulate itself better. They are very effective at treating lupus, and do not cause vulnerability to infection as immunosuppressants do. However, a known side effect is retinal damage. So, for people with eye problems and lupus, it is important to find alternative medications.

Retinal Vasculitis and Lupus

Retinal vasculitis involves the retina being cut off from the blood supply. Vasculitis is the term for the inflammation of blood vessels and is a common symptom of lupus. When blood vessels become inflamed, they can narrow or swell, restricting or even blocking blood flow. However, it can also weaken the walls of the blood vessel, allowing it to stretch and bulge. If the walls of this bulge break, then it becomes an aneurysm and leads to potentially life-threatening bleeding. This is different from clots and atherosclerosis, but it can contribute to clots that are already there.

The result, retinopathy is a “catch-all” term for a variety of eye-related symptoms, usually painless. You can read more about it here. Vasculitis in the eye isn’t usually enough to kill the cells in the retina, but when the body tries to ‘fix’ the issue, the new blood vessels it creates can block vision due to poor placement. They can also end up bleeding into the eye. If these blood vessels affect the central area of the retina, called the macula, this can cause blindness. 

Neuromyelitis Optica and Lupus

Neuromyelitis optica, also known as Devic’s disease, is autoimmune disease inflammation that attacks the optic nerves and spinal cord. Neuromyelitis optica (also known as NMO,) can occur alongside SLE as a part of the autoimmune disease and causes issues with vision and even blindness.

Nerve damage is a potential complication of lupus and can directly affect the optic nerve or the nerves controlling the muscles attached to the eye. This is most likely to happen alongside other nervous system symptoms. Hearing loss can also occur happen for the same reasons. 

NMO and SLE can both be treated with high-dose oral and intravenous corticosteroids, intravenous immunoglobulin, mycophenolate mofetil, tacrolimus, low-dose daily oral cyclophosphamide and rituximab.

Treating Vision Loss and Lupus

In case studies early recognition and interventions seemed to be key. Treating lupus also treated retinopathy, although antimalarials such as hydroxychloroquine are to be avoided. 

Retinopathy is treatable with anti-coagulant medications, which help reduce blockages. Laser surgery can correct other types of retina-based disorders, using the highly energetic light to break up clots or seal off blood vessels in bad placements. It is also treated with corticosteroids, bevacizumab, rituximab, and belimumab – the typical treatment for reducing inflammation for this autoimmune disease.

One of the few types of medications that do not affect the eye are steroids, which can be given as eye drops to soothe inflammation when it directly affects the eye. 

Lupus is notoriously challenging to manage. It can seem like almost anything can trigger a flare – as if you didn’t have enough to deal with!

Once a personal trigger identified — such as a food or UV light exposure — you can work to avoid it. But changes in humidity, including both dry air and high humidity, can exacerbate symptoms.

Every person with lupus reacts to the weather differently. People with lupus find that their symptoms are greatly affected by the temperature, the humidity, the barometric pressure, and the ambient light levels around them.

You can read more about the effects of weather and lupus here. Joint pain in particular is affected by barometric pressure, and you can read more about that here.

Seasonal changes can affect people with lupus too, and, for many parts of the world, seasonal shifts can include different humidity conditions, along with heat and cold.

Temperature, Humidity and Lupus

Despite anecdotes suggesting otherwise, a study found no correlation between humidity and lupus activity. Flare triggers for SLE seem to generally be temperature related, or due to a change in seasons. The change in temperature, weather, and light that comes with a seasonal change is hard even on people who don’t have lupus. However, heat is a well-known trigger autoimmune disease, but it can also hold more water, which is why hot weather is often humid. 

Cold weather is associated with a slightly higher rate of hospital admissions for SLE-related symptoms. Cold air holds less moisture than warm air, which dries out the nose, throat, and lungs. This irritation can trigger an inflammatory response. Humidifiers help to mitigate the effects of dryness.

Cutaneous Lupus and Humidity

Cutaneous Lupus Erythematosus (CLE) is a form of lupus characterized by red, ring-shaped discolorations on the skin. These “discoid lesions” are caused by inflammation, and often happen alongside systemic lupus erythematosus (SLE.) Discoid lesions can cause hair loss and scarring if they become severe.

In addition to being very sensitive to UV light, dry air – the lack of humidity – can irritate the skin and lead to worsening symptoms. The skin can be protected with sunscreen, lotions, and by avoiding sunlight and dry air. However, be sure to check any products you use for potential allergens.

Sjögren’s Syndrome, Lupus, and Humidity

15-18 percent of people with lupus are also battling Sjögren’s Syndrome. Another autoimmune disease, the two most common symptoms of Sjögren’s syndrome are dry eyes and dry mouth. You can read more about Sjogren’s syndrome here.

A humidifier can be a great investment for both Sjogren’s syndrome and lupus. It moistens the air and, as you breathe, your throat. Humidifiers put water into the air, which can both prevent moisture from leaving the body and help restore some of it.

How to Deal with Humidity and Lupus

People with lupus should keep track of how their symptoms interact with the weather. And determine what type of weather effects them the most.

In most cases, though, staying inside is a great way to minimize exposure to the weather and changes in humidity. You can control your indoor space with air conditioning and humidifiers, keeping things at a comfortable level that does not induce flares – so, in a sense, you can control the “weather” around you.

You can also control your own body to a degree. Keeping up a basic level of health to bring down and manage the pain and swelling. This means drinking plenty of water, eating healthily, avoiding alcohol, nicotine, and caffeine, and getting plenty of sleep will help manage pain and swelling.

The Causes of Lower Back Pain for Lupus Warriors

Lupus Nephritis and Lower Back Pain

Lower back pain usually occurs in people when lupus causes the body’s immune system to attack the kidneys. The medical term for this is lupus nephritis. Lupus nephritis causes inflammation of the small blood vessels that filter wastes in your kidney, which are called glomeruli.

Learn more about lupus nephritis and the kidneys here.

Tests to help determine lupus nephritis

Urine Test

The urine test will detect if there is any protein in the urine. Diseases that affect kidneys many times cause your glomeruli to leak protein into your urine causing it to have a foamy appearance. The term for the condition of having protein in the urine is called proteinuria.

A symptom of lupus nephritis is blood in the urine. Although it’s typically easy to spot blood in the urine, a urine test can detect this as well.

Blood Test

There are several things technicians look for with diagnostic labs involving the blood. The first is cholesterol and protein levels. When they are high, that means the kidneys are not filtering waste the way they should.

Blood tests also check the GFR (glomerular filtration rate), which also shows how well kidneys filter waste.

Finally, blood tests check for antiphospholipid antibodies and anti-nuclear antibodies (ANA), which indicate autoimmune diseases..

Kidney Biopsy

A biopsy of the kidney can also detect if a case has evolved into lupus nephritis. Biopsies are invasive procedures where a clinician removes a small slice of a particular organ for analysis under a microscope.

Muscle Inflammation—Myositis

A very common cause of lower back pain for Lupus Warriors is muscle inflammation. Lupus does not only inflame a muscle, it inflames muscle groups. The medical term for this is myositis.

Muscle Aches—Myalgia

When there is a dull aching constant pain of the muscles, the medical term to use is myalgia. Myalgia is usually considered chronic—unlike inflammation. Chronic pain—especially chronic lower back pain—can interfere with daily life.

How to Treat Lupus Lower Back Pain

If the lower back pain is connected to lupus nephritis, medical treatment is extremely necessary and needs to be immediately addressed. If the lower back pain is associated with muscle inflammation or myalgia, there are certain measures Lupus Warriors can take to ease some of the discomfort.

Exercise

When it comes to inflammation, take all the necessary steps to reduce stress and prevent flares. It’s also important to maintain the strength of the lower back as well. The lower back can have surprising effects on the gluteal muscles and leg muscles.

It’s important to exercise the lower back muscles in the event a flare leaves the body debilitated for a number of days. Getting back on the feet, walking, bending over, lifting, etc, can all be difficult on the lower back after it has not moved for an extended period of time.

Massages

Massaging the lower back might help with myalgia. Working the muscles with the pressure and mild stretching of massages might release some of the tension and alleviate the dull aching pain. After a thorough massage, it’s always important to drink plenty of water to reap the full benefits.

Reflexology, a form of massage, may also provide some benefit.

Stretching

If the doctor or medical provider gives the okay to exercise, a more intense form of stretching might help myalgia of the lower back. Stretching the hamstrings and gluteus muscles every day will release the lower back muscle group and possibly manage pain throughout the day. Studies have shown stretching has a significant positive impact on myalgia.

A Final Note

Because of the connection to lupus nephritis, it is always a good idea to bring up symptoms you are experiencing with your lupus treatment team. Aches and pains are common with lupus, but they can be key indicators of disease changes.

Systemic lupus erythematosus (SLE) has many different symptoms. This is because Inflammation effects all of the parts of the body, from the joints, to the nervous system, to metabolism, leading to weight gain, pain, fatigue, and many other problems. One of the most common symptoms of SLE-related inflammation is fever, occurring in 35-86% of patients. In fact, lupus-related fevers are often one of the first symptoms of lupus. When it occurs alongside joint pain and malar rash, however, it forms the “classic triad” and may encourage further testing and diagnosis of SLE or other autoimmune diseases.

What is a Fever?

The body has many methods to fight off infection, and fevers are one of them. In response to inflammation, such as to a bacteria or virus, the body signals the hypothalamus, the organ that regulates many bodily functions, to heat up and try to ‘cook’ them out. This works because humans can survive heating up a range of temperatures above the normal 98.5 degrees for a short time with some discomfort. Many bacteria, viruses, and parasites cannot survive this overheating.

However, lupus is an autoimmune disease, and it can trigger inflammation responses, including recurring low-grade fevers, which are below 101 degrees. Flares can last from 2-6 days, can even linger for weeks, and this correlates to the fever symptom. They are not life threatening, but they are exhausting and, often, include headaches and can last for weeks at a time.

Other illnesses that are likely to occur alongside lupus, such as sarcoidosis, vasculitis, other autoinflammatory disorders, and rheumatism can trigger fevers. Some medications also might have low-grade fever as a potential side effect.

Low-grade fevers have the following symptoms:

• Warm, flushed skin
• Chills or shivering
• Sweating
• Muscle Aches
• Headaches
• Difficulty focusing

Sometimes, people with lupus have trouble regulating their body temperature in hot weather, experiencing symptoms like hot flashes, and sweats. In some cases, the thyroid, an important organ involved in metabolism regulation, can be effected by lupus and lead to overheating, as well as fatigue, muscle weakness, hair loss, or dryness of the eyes and mouth. The onset of menopause can also cause hot flashes, which is significant because many people with lupus are women. These are, however, different from lupus-related fevers.

There are also lupus headaches and migraines that are not related to fevers, and feel different from febrile (fever-related) headaches.

Diagnosing with Lupus Fevers

A “fever of unknown origin” is a catch-all term for low-grade fevers that do not have a known cause and last for a significant amount of time. Lupus fevers are often not diagnosed for a while because doctors try to rule out other causes first, even if the person is known to have lupus. This is because people with lupus are more vulnerable to infections that trigger fevers due to their lupus and immunosuppressive medications. and it is important to catch these as soon as possible, even though 60% of these fevers are likely to be lupus related. You can read more about infections and lupus, here.

The intensity of lupus-related fevers, and the flare triggers that cause them, can vary widely from person to person, which also make it difficult to diagnose fever symptoms quickly.

Treating Lupus Fevers

For the most part, lupus-related fevers should be treated like any other fever :

• Cold compresses or ice packs, to lower temperature
• Lots of water to avoid dehydration
• Rest, to overcome fatigue
• General self-care (eating right, sleeping right, and hygiene)

NSAIDs (naproxen, ibuprofen, acetaminorphin,) and steroid medications are very effective at controlling fevers and easing some of their uncomfortable symptoms. Antimalarial drugs , a common type of lupus medication, are also effective, as they reduce inflammation, which reduces fever. You can read more about lupus medications here.

In short, for the most part, fevers are unpleasant, but do not require too much special care and will go away on their own.

However, if the fever persists or gets into the higher temperature range (such as 101 degrees,) it is important to get a checkup to make sure it is not a potentially life-threatening infection. A doctor should be contacted at 104 degrees, if it is accompanied by a worsening cough, severe muscle pain, or feelings of disorientation.

Bacteria play an important role in the human body, particularly in the intestines where they help break down food and produce certain vitamins. In the last 20 or so years, people have become increasingly aware of how the gut microbiome is affected by diet, and how intentionally eating foods rich in “good” bacteria can dramatically improve one’s health. In particular, how encouraging “good” bacteria to move into the gut can help make the immune system function healthier. You can read more about lupus and probiotics, here. In general, the more diverse the microbiome is, the better.

However, good bacteria are not limited to the inside of the body. The bacteria, yeasts, viruses, and other microorganisms living on our skin are also important to our health.

What is the Skin Microbiome?

The skin is an organ that protects the body from foreign organisms, so it is fairly resilient and has many features (high acidity and salt content, dryness, and lack of nutrients) that help it block invaders. Many bacteria find it a less-than-pleasant environment, but some bacteria have adapted to live in this space. The skin actually varies between different parts of the body with different levels of sweat, textures, folds, moisture, oxygen exposure, and oil production. This effects the microbiomes on the skin, with different microbes favoring different spots on the body. For example, bacteria that are associated with acne like oil and the texture of facial skin.

This fact, in addition to the constant exposure of the skin to the outside world, would normally result in a diverse and rich ecosystem on the body. To a certain degree, the microbiome on our skin does similar things to the microbiome in our intestines. This includes producing substances that help maintain the health of the skin and its ability to repel invaders.

These organisms also crowd out those that can make us sick, preventing them from getting a foothold on the skin. The skin microbiome also effects body odor. Such as armpit smell among others. If you know someone with bad body odor, the skin microbiome (which interacts with the chemical composition of their sweat) may be the culprit!

The skin microbiome can be affected by a person’s environment, the body’s overall health, the immune system’s health, and certain medications. Hormone differences between sexes also effect the microbiome, and ethnicity seems to also have some effect (though the exact reasons for this are unknown). Hygiene and cosmetic use also can change the skin microbiome, which you can read more about here. The skin microbiome also changes naturally as a person ages. 

Skin Microbiome and Lupus

When tested, the skin microbiotia in people with lupus is very different from healthy controls. The studies found, further, that the less diverse, populous, and evenly distributed the microbiome was, the more intense lupus symptoms (including kidney symptoms) are present.

People with lupus experience more bacterial infections than otherwise healthy people. Staph, in particular, is a leading cause of infection in people with lupus. Staph infections are linked to serious conditions including necrotizing fasciitis (although there are other bacteria that can be involved) a devastating flesh-eating infection that can also infect people who are on immunosuppressants.

People with lupus have less-diverse and less-densely populated microbiomes than otherwise healthy people, as determined by some studies. Lupus lesions, when tested, have very different microbiomes than the rest of the skin. One bacterium in particular is Staphyococcus aureus, the bacteria responsible for staph infections. About 40-50% of their skin was colonized by staph bacteria, compared to 30% in people who do not have lupus. Staph can be present on the body long before it invades. It also may trigger inflammation or flares just by being on the skin. Since the skin cells can detect it and will release interferon, summoning the immune system to deal with the bacteria before it causes an infection.

The interferons released by these skin cells help the staph bacteria “stick” to the skin. The interferon seems, specifically, to break down some of the barriers between skin cells and the outside world. Reducing the toughness of the cells. It is thought that this allows the bacteria to get a foothold.

What is Cutaneous Lupus?

Cutaneous lupus erythematosus (CLE,) is a form of lupus that primarily effects the skin. Symptoms include rashes, sores, and disk-shaped raise blotches on the skin (discoid lesions) and can appear on the face, ears, neck, arms, legs, and hands. CLE can occur alongside systemic lupus erythematosus (SLE) or on its own. Though people with CLE and SLE both suffer from sunlight sensitivity. People with CLE can actually see their symptoms intensify with light. You can read more about light sensitivity and lupus here.

Treating SLE also treats CLE, so corticosteroids, NSAIDS, and immunosuppressants can help with CLE. However, CLE can also be treated with medications that are applied on the skin, known as topical medications. Sunscreens are particularly important, as they both moisturize the skin (which prevents irritation) and protects against sun exposure. This can prevent CLE symptoms from developing. Numbing, cooling, or pain-relieving lotions – such as those made with aloe – help people with CLE avoid scratching, squeezing, or picking at cutaneous lupus lesions, preventing them from getting worse.

Lupus Treatment and the Skin Microbiome

Although the microbiome is resilient, lupus and the medications can change things for the worse. Sometimes, the microbiome on the skin, just like in the gut, needs a little help. There are many ways for people to treat itchy skin and rashes, some of which help “feed” the skin microbiome as well as moisturize. Essential oils (properly applied) and natural skincare products may help soothe the skin and support development of the skin microbiome.

Skin microbiome transplants are also possible. By sterilizing the skin with antibiotics, the skin can then be re-colonized with selected microbes and nutrient supplements. However, this can be tricky as certain favorable bacteria might not be able to thrive in their new environment. Like with other microbiome transplants, using antibiotics on the skin can also be harmful, and can actually clear the way for harmful bacteria. This is definitely only an option in last-resort cases, or after antibiotics are used for another purpose.

Speaking of which, topical antibiotics can be used to treat and prevent infections such as staph. Cosmetics are useful for people with cutaneous lupus, since they can cover up the lesions. However, certain cosmetics can be formulated to actually have an effect on the microbiome of the skin. They can be fortified with probiotics (favorable bacteria), prebiotics (nutrients that encourage the growth of certain favorable bacteria), and “cosmeceutics,” which are designed not to harm the current balance of the microbiome.

All of these could potentially be helpful for people with lupus — but always be sure to consult your lupus treatment team before starting any new treatments. And, consider adding a dermatologist to your team to better manage the skin challenges of lupus.

T cells are a special type of white blood cell that come from the thymus known as a lymphocyte. White blood cells work to protect the body. They seek-out and destroy threats to the body. In particular, T cells specialize in attacking pathogens that use the body’s own cells to multiply.

Common targets of T cells include:

• viruses
• bacteria
• tumors

How do T cells properly identify, flag, and destroy the correct cells? Cells that have been damaged in some way have a distinct chemistry and a protein signal on the other membrane. T cells

However, T cells will sometimes make a mistake and attack the body’s own healthy cells. Usually, other immune system cells reign them in and destroy these faulty T cells before they cause problems. This process is known as regulation. 

But, for people with autoimmune diseases, including systemic lupus erythematosus (SLE) and lupus nephritis (LN), the regulatory cells fail. This allows T cells to go rogue and attack the body, causing the symptoms of lupus.

T cells vs B cells

The immune system actually has many different types of cells that work to protect the body. Each one specializes in a specific type of defense. Two types of cells called “Lymphocytes” have been linked directly to lupus:

B-Cells, are involved with investigating and recognizing invaders (known as antigens). When they identify a threat, they produce B-cell activating factor, a known sign of lupus.

T-Cells are more like the strike teams because they mark and kill problem cells. They also cause B cells to transform into plasma cells, which attack invaders with enzymes and toxins. Furthermore, they possess another important role: clean up. 

T cells come in several forms:

• Helper
• Regulatory
• Cytotoxic
• Memory

Helper T Cells

Helper T Cells are the scouts. They mark cells to be destroyed and trigger the immune responses of other cells. Helpers are incredibly important. When problems occur with these T cells, invaders slip through unnoticed and the body can’t fight disease effectively. 

As a safeguard against triggering the immune response unnecessarily and to keep the response targeted, Helpers need to receive two signals in order to activate the immune response.

1. The first signal comes from an attached antigen
2. The second comes from an activated cell immune system cell
   • Once activated, Helpers are part of the chain reaction known as the immune response

Once the antigen has been eliminated and the first signal goes away, the Helpers deactivate. This stops the chain reaction and the immune response dies down. 

When Helper T cells react to auto-antigens (proteins produced by your own cells), they are actually working properly. The problems that result in lupus occur elsewhere in the system, where Helpers that would react to auto antigens are usually destroyed. You can read more about ANA, a type of auto-antigen, here.

Regulatory T Cells

The thymus in most healthy individuals actually destroys autoimmune lymphocytes. This is extra important for T cells because there is a thin line between attacking rogue cells and healthy cells. T cells also have their own policing force: Regulatory T Cells or Tregs (or Regulators.)

Tregs are still somewhat of a mystery. But, most researchers believe that they act as an added level of security, limiting the immune response and also specifically preventing T cells from targeting the body’s own healthy cells. In fact, they specifically target and hold back T cells that are targeting the body’s antigens.

Or, rather, they are supposed to. Tor people with lupus and other autoimmune diseases, there is some evidence that their Tregs are faulty (either due to damage or due to genetic factors) and unable to do their job. Not only are they not able to stop T cells from targeting healthy cells, but they are also permitting a constant (or flaring) state of inflammation. That’s the bad news.

The good news is that T regs can be targeted with medications with promising effects. You can read more about genetic factors related to lupus here.

Cytoxic T Cells

Cytotoxic T Cells are also known as “Killer T Cells” and they do exactly that. They are extremely efficient assassins, directly killing infected or compromised cells. They do this through various means:

• Cytokine secretion
  • The killer cell spews poison at the infected or cancerous cell. It breaks down viruses and prevents the cell from multiplying or performing any of the functions that it needs to do to survive.
• Cytotoxic Granules
  • These tiny beads are made up of enzymes that break into the cell and break down the virus’s production factories in the cell. They also trigger the cell’s self-destruct sequence, also known as apoptosis or cell death. 
• Fas/FasL Interactions
  • Cytotoxic T cells have a protein called FasL on their surface. It binds to the Fas receptor on the target cell. This causes changes in the cell’s membrane that pulls several signaling proteins together, triggering apoptosis. 

Interestingly, the Killer T cells are very good at only attacking the cells that they are supposed to. All of these methods are targeted and minimize damage to cells nearby.

Killer T cells are also involved in cleanup. Once no more compromised cells remain, they attack each other (usually through the Fas/FasL method). All Killer and Helper cells that were involved in the infection are disposed of. This stops the inflammation response and prevents healthy cells from being attacked by rogue Killer T cells. 

Again, in autoimmune diseases, this isn’t the issue. The problem arises because the regulatory T cells don’t stop the Helper cells from flagging more targets.

There is one type of T cell that the cytotoxic T cells do not kill: the memory T cells. 

Memory T Cells

Memory T cells, as the name implies, are the immune systems “memory.” They allow the body to recognize antigens that it has encountered before.

They “remember” antigens they have encountered previously by having a specific receptor on their exterior. If they find an antigen they recognize, they set off the immune response faster than non-memory T cells (also known as “naive” T cells). Memory T cells let the body protect itself quickly from diseases that once caused it problems. In fact, memory T cells and other immune memory cells allow vaccines to work – vaccines work like target practice that let the body create the appropriate memory cells.

The problem arises when the Memory T cells remember antigens that are harmless (as in allergies) or auto antigens (as in autoimmune disease.)

T Cells and Lupus

Research has made it clear that there is a link between systemic lupus erythematosus and T cells, particularly faulty regulatory T cells. Poorly regulated T cells are known to attack organs and neurons throughout the body. This causes the many symptoms of lupus and other autoimmune diseases, (including brain fog).

 According to LupusResearch.org, the more we understand about how these T cells work, the closer we come to harnessing T cells in treating lupus and other autoimmune diseases. Studies have shown benefits of altering T cells through treatment with CAR (Chimeric Antigen Receptor) therapy.

This therapy involves T cells (called CAR-T cells) that have been genetically engineered to produce receptors for the antigens that self-targeting cells produce. In this case, the B cells responsible for sending the T cells into a frenzy against the body’s healthy cells. It holds a lot of promise. In studies in mice, CAR-T cells had a long lasting effect, and even made memory T cells after they were no longer in the body. This means that the T cells flagged and killed off the problematic cells on their own. The mice even appeared to enter disease remission! 

One of the advantages of this kind of approach is that it could be very specific to lupus. Plus, it does not have some of the other risks associated with immune system suppressing drugs.

Current treatment status

Recently, the main focus of clinical trials involving CAR-T cells is attacking cancers, particularly blood cancers. Use of CAR-T for lupus is fairly new, but researchers are very excited about it’s potential.