What is Renal Replacement Therapy?

Kidneys are vital organs, and damage done to them affects the entire body. Lupus Nephritis (LN) is the term for when inflammation caused by lupus severely damages structures in the kidneys known as nephrons. This kidney damage, which occurs in about 40-60% people with lupus, can lead to a loss of kidney function. Lupus causes other damage to the kidneys as well, including urinary tract infections, but in all cases, kidney damage and potential kidney failure is the source of the most serious symptoms of lupus.

The symptoms of lupus nephritis include fluid retention and swelling, joint pain, muscle pain, fever, high blood pressure, abnormal urine, and even the well-known malar rash of lupus. You can read more about kidney disease and lupus here. 

Lupus nephritis is very serious, but the treatments for it are very effective. 10-30% of people with LN develop end-stage renal disease and kidney failure, which increases their risk of death. As long as they do not enter renal failure, however, people with lupus can live normal, relatively healthy lives.

Renal replacement therapies are used to maintain their health and offset the damage to the body caused by nonfunctional kidneys. Dialysis is a form of renal replacement therapy that helps the body remove waste, salt, and extra water in the bloodstream. It also helps balance potassium and sodium, important chemicals for the body, and helps maintain blood pressure.  You can read more about it here.

Do Flares Happen While on Dialysis?

Yes. Disease flares can occur even while on dialysis, a renal replacement therapy where treatments (including machines) stand in for failing kidneys and filter the blood. It does not appear to reduce flares, though. People who experienced flares were also likely to experience flares under renal replacement therapy. 

In a study on 121 patients with SLE on dialysis (both hemodialysis and peritoneal dialysis) 26.4% of them experienced an SLE flare. Most of these people were treated with cortiosteroids, and 34.3% of people took additional immunosuppressants to combat disease symptoms and flares. Flares included fevers, thrombocytopenia (low platelet count,) and leukopenia (abnormal levels of white blood cells in the bloodstream.) Both of these are clear markers of increased inflammation and are expected in cases of flares.

Flares can occur right after dialysis, possibly caused by the dialysis itself, which does stress the body. Fatigue is a known side effect of hemodialysis though researchers are not entirely sure why.

Reducing Flares on Dialysis

Renal replacement therapies take on the function of the kidneys, removing waste products and maintaining a balance of dissolved materials and fluid in the  bloodstream. Doctors try to minimize reactions to dialysis by having it done in several short, intermittent sessions. This reduces the stress on the body and potential for flare triggering events.  For more severe acute renal failure, continuous dialysis has to be used, which can be harder on the body, but is necessary.

Most people with lupus are not using dialysis to control flares, but to avoid the symptoms of renal failure. Instead, they use immunosuppressive therapy, a key treatment for lupus nephritis, to reduce inflammation and avoid symptom flares.

People with lupus are also advised to drink plenty of water and stay hydrated. This helps to maintain good kidney health and takes some of the pressure off of the kidneys. It also has many other health benefits.

Dialysis is not necessarily forever! 28% of people with lupus nephritis restore enough kidney function to come off of dialysis. Keeping up the treatment is key and will reduce flares. 

Systemic lupus erythematosus (SLE) is an autoimmune disease that turns the body’s own immune system against itself. So, it shouldn’t seem too out-of-the-blue that many treatments for SLE target the immune system. Usually, these medications reduce inflammation, or by forcing the immune system to be less active. These medications have serious and unpleasant side effects, but for many people with lupus, reducing or even stopping their lupus symptoms is worth it. You can read more about lupus medications here. 

However, other therapies try to actually make the immune system work the way it’s supposed to.

CAR-T cell therapy is a type of therapy called “immunotherapy” which uses the body’s own immune system to treat patients. CAR – T therapy takes T-cells already produced by the body and modifies them. After being modified, the patient’s own immune system is better able to target and attack cancerous cells but there are a lot of potential benefits for people with autoimmune diseases. In fact, a recent study demonstrated that CAR-T cell therapy can suppress lupus symptoms into what is known as remission – without compromising the patient’s immune system!

What is Remission?

Remission in lupus is the long-term lack of symptoms or flares after treatment. Some people with well-managed lupus were able to go for up to 5 years, or even longer, without dealing with symptoms or flares. Usually, this is achieved with lupus medications, including immunosuppressants, taken over many years. Over time, these medications control inflammation in the body to a point where it can heal some of the damage and stop the rampaging symptoms of lupus, but they don’t cure it. Lupus is always there and can be triggered back into the disease later on.

There are several often-frustrating side effects to lupus medications, and one of them is that a suppressed immune system is more vulnerable to sickness and infection. When someone has a compromised and vulnerable immune system, it is known as being immunocompromised. It is also harder for a vaccine to ‘take’ in people who are immunocompromised – there just is less of an immune system for the vaccine to train. Because of this, researchers have been looking into treatment methods that can allow people with lupus to achieve remission without weakening their immune systems. Not everyone responds to typical lupus treatments either, a situation known as refractory lupus – they need alternative therapies. You can read more about refractory lupus here. CAR-T cell therapy is one such therapy under investigation.

What is CAR-T Therapy?

There are several different types of CAR – T therapies, but overall, CAR stands for “Chimeric Antigen Receptor.” Receptors are structures on cells that allow them to “receive” certain molecular structures on their surface. Each receptor only matches with a limited number of molecules that fit its shape. Once a receptor attaches to its matching molecule, or a closely related one, a switch is flipped in the cell, starting a chain reaction throughout the cell that allows it to respond. This is how cells throughout the body work, and in the case of an antigen receptor, immune system cells like T-cells use these receptors to sniff out pathogens and activate the correct response. With CAR, these antigen receptors are laboratory engineered structures that better recognize B cells.  Equipped with these upgraded receptors, T Cells are able to sniff out and destroy B cells.

B-Cells and Lupus

B cells, also known as b-lymphocytes, are a type of immune system cell that attacks viruses, bacteria, parasites, and cancer – anything that uses the body’s own cells to hide or reproduce. These cells usually detect special antigens that stressed or damaged cells produce and will attach to those antigens and trigger a self-destruct mechanism in the cell. However, in autoimmune disease, these cells ‘sniff out’ healthy cells too, attacking them. Not only does this cause damage to those cells and to the organs that use those cells, but the defective B cells signal to the body that there is a threat, leading to inflammation, or higher levels of immune system activity. Over time, the damage accumulates, and the body becomes more trained to attack these cells, leading to a vicious cycle of autoimmunity. In addition to also killing off sick cells, T cells are one of the ways that the body culls out the B cells that target healthy cells, but for yet unknown reasons, the T-Cells aren’t doing their jobs properly in people with autoimmune diseases such as lupus. CAR-T therapy puts T cells back on the job, reducing the amount of B cells in the body that can cause problems for a patient. You can read more about T Cells and their functions here. 

Because it improves the function of the immune system – working with what is already there without involving other organs – serious side effects are rare.

Chimeric? What does that mean?

“Chimeric” means that the CAR antigens were developed using the genetics of multiple species to get the receptor structure they were looking for. Since all life forms on the planet use the same general source code, DNA (or RNA for viruses,) the body has no issue using or replicating the new antigens. 

Several of the side effects of CAR tend to be reactions to the infusion process itself. CAR – T therapy is usually given intravenously as an infusion, and the white blood cells modified as part of the therapy are drawn from the patient’s own bloodstream.

Unfortunately, the body doesn’t always respond well to needles, having blood drawn, or having medication flowing directly into the bloodstream. Sometimes the body will go into a stressed state known as vasovagal synope. Essentially, the body panics, thinks that you are wounded, and lowers the heartbeat and breathing rate. This leads to a sudden drop in blood pressure and feelings of lightheadedness. Nausea, fever, fatigue, loose stools, and confusion can result as the body overreacts. A person can even fall unconscious for a short time. While vasovagal synope usually goes away on its own, it’s something that should be looked into further if it’s common. 

This is not a reaction to the antigens themselves, but the process of administering the medication. Since the cells come from the person’s own body, rejection or allergic reaction is unlikely.

The Research on CAR-T Cell Therapy

In the study, presented at the American College of Rheumatology’s annual meeting in 2023,  8 patients with lupus were treated with CAR-T therapy, 5 of which had follow ups a year or more post-CAR T therapy. All of these patients were able to achieve drug-free remission on this therapy, for 8 months or more. They were not taking immunosuppressants, and tested negative for autoantibodies – antibodies that marked the body’s own cells. Their immune systems were left intact and relatively robust, and the patients were able to be successfully vaccinated for measles, mumps, rubella, varicella zoster virus, Epstein-Barr, tetanus, and pneumococcus. This is because, after the autoimmune B cells were cleared from their system, they produced fresh, new B cells. 

These cells did not immediately attack the body, and instead behaved as normal and were able to be trained to the vaccines. This does not happen under immunosuppressants, so this was an exciting find. Patients tested negative for autoantibodies and remained in remission until the end of the study. 

Of course, this study was done on 5 people – a tiny sample size. None of them were of African descent, and only one was registered as Hispanic, which is not representative of the population. There are also side effects and cost limitations to CAR-T treatment, and it is not approved for lupus patients in the US. However, it is approved for several cancer treatments, which makes this study extremely promising. It is also not the only study of its kind:

In a 2020 study on 43 patients, the researchers saw 51% of their patients go into remission for more than 3 years after the therapy. Some of the patients had remissions as long as 9 years (and still going) by 2020. They noted few adverse effects from the treatment, as well. 

Side Effects of CAR-T

Aside from the effects of the infusions and blood draw, CAR-T has a few other notable side effects. In addition to potential allergic reactions, the depletion of certain vital minerals and cells in the bloodstream, and a weakening of the immune system as the T Cells clear out the B cells. 

Cytokine Release Syndrome

Cytokine release syndrome (CRS) also known as a “Cytokine Storm” CAR-T cells are modified, but living, cells and can replicate themselves in the body. As they begin to target B cells, they release cytokines into the blood stream. Cytokines are proteins made by the body to act as messengers, helping the immune system coordinate itself and the rest of the body into combatting a threat. Or, in some cases, sounding the all-clear. Cytokines have many functions, but the sudden rush of cytokines caused by the modified T cells can overwhelm the body, suddenly ramp up inflammation, and even potentially be life threatening. The symptoms of a cytokine storm are very similar to a flu, and this is because the cause is similar – the immune system is pushed into hyperactivity by a storm of cytokines. However, without a threat like the flu, the body is making itself sick for no benefit.

While possible, the cytokine storm complication of CAR-T seems to be uncommon. 

Nervous System Symptoms

It’s not clear why CAR-T can have several serious effects on the immune system, but it can cause:

• Headaches
• Unconsciousness
• confusion
• seizure
• tremors
• loss of balance
• trouble speaking and understanding language.

These seem to be temporary, however, and doctors only advise against avoiding dangerous activities and using heavy machinery for several weeks after the therapy.

In addition, while CAR-T seems to cause long-lasting remission, relapse is also still possible after the therapy, so it shouldn’t be thought of as a cure – like any other treatment for lupus.

Lupus treatments have come to a point where long-term survival and even remission is possible. However, many people don’t respond or find their symptoms reduced by the “gold standard” of lupus treatments for lupus. You can read more about lupus medications here. This includes glucocorticoids  such as prednisone, hydroxychloroquine, immunosuppressives, antimalarials, and certain anticancer drugs. This condition is known as Refractory Lupus. 

While uncommon, there are still many people who struggle with refractory and resistant lupus. In a study looking at 257 patients with systemic lupus erythematosis, about 6.2% of people being treated for lupus had refractory lupus, defined as not having improvement of symptoms even after intensive treatment. 

Lupus nephritis and systemic lupus, and neuromyelitis optica can all develop into refractory lupus. A good diet, good exercise, and a healthy lifestyle that avoids tobacco and alcohol can help, but researchers are developing alternatives to the gold standard medical treatment to relieve the symptoms further. 

Currently, researchers are looking at biologics and other therapies, such as mesencymal stromal cell or hematopoietic therapy, as potential treatments for refractory lupus.

Biologics for Refractory Lupus

Biologics are relatively new therapies that target the specific parts of the immune system that go haywire in lupus. They are produced by laboratory-modified cells to help people take control of their immune system. They are made from modified forms of immune system particles, such as antibodies, that are found naturally in the body. Some biologics mark autoimmune cells for destruction, others block cytokines, the signals that set off the overactive immune system. B cell-targeted therapies in particular have a lot of potential for people with refractory lupus.

Biologics are very precise and effective but also require people to go to the hospital and get an infusion or find a trained medical caretaker to help them with the injections. That makes them something of a burden for the patient.

Rituximab for Refractory Lupus?

Rituximab is one such a promising therapy for reducing symptoms in refractory lupus. Rituximab is a biologic drug that is often perscribed as a chemotherapy to combat non-Hodgkin’s lymphoma (which is a cancer that affects the white blood cells,) and rheumatoid arthritis. 

Researchers looked at 26 papers and compared the results of a total of 300 patients with an average follow up time of 60 weeks. Those who took B-cell ablation with the chimeric anti-CD20 antibody rituximab (RTX) had reduced symptoms of refractory lupus nephritis, and a few even entered remission. 

The side effects are fairly mild and are mostly because the medication is delivered via infusion, which can be stressful for the body. However, these symptoms can include fever, shaking, chills, tiredness, headache, or nausea

A Lupus Warrior’s Takeaway

Most biologics are currently not commonly available, unfortunately: Rituximab, calcineurin inhibitors, and other biologics (such as belimumab) are presently in the midst of some very promising clinical trials. It will take a few years for these trials to conclude and the researchers to have enough data to ensure that the side effects are acceptable.

Systemic lupus erythematosus (SLE) is an autoimmune condition where the body attacks its own cells throughout the body, leading to a wide range of symptoms. 

SLE is well known to affect women and minorities disproportionately. 78% of people with autoimmune disease are female, and of those, about 90% of people with lupus are female. 

However, this doesn’t mean that people of all genders and all ethnic groups can’t get lupus! Men are an understudied group when it comes to lupus and autoimmune diseases in general. Why are these numbers so different? 

An autoimmune disease is when the body’s own immune system malfunctions and starts attacking its own cells without reason. Autoimmune diseases rely on the immune systems of the patients, so anything that affects their immune system also impacts their lupus. Biological sex and gender expression both have an affect on the conditions that effect the immune system.

Biological Sex and Lupus

The immune system appears to act differently in men (biologically male people) versus women (biologically female people.) In particular, they respond with different “helper T cells,” which are the activator molecules for the cells that fight viruses. Women generally have a stronger T cell response than men, and more robust immune systems in general. However, because T cells normally attack the body’s own cells to stop viral infections, it only takes a few things to go wrong before this stronger immune response attacks healthy cells, too. It’s unclear how the different helper T cells that are activated in men and women change the very complex immune system, but researchers have noticed that there is an age difference in lupus symptom onset along with this cell activation difference. Hormone levels and the immune system itself change across a person’s lifespan, so a natural shift in how the immune system is functioning might be a trigger for lupus: In men, this means that they tend to show symptoms of autoimmune disease before age 50. In women, it tends to be later in life. 

Research estimates that approximately 1 in 10 people with lupus are male. Lupus in men have the same symptoms but are even less likely to be diagnosed properly due to misinformation. Doctors also have a tendency to “look for horses, not zebras” even when said zebra is right in their face. Discrimination is a factor, too, and many men are dismissed or are pressured by society to ‘man up’ and ‘muscle through’ their pain.

Genetic background plays a huge role in the development of lupus, as does environmental stress. Both of these could contribute to why people of African, Asian, Hispanic/Latino, Native American, Native Hawaiian, and Pacific Islander descent are more likely to develop lupus. A difference in hormone levels  may be responsible for the different rates of lupus between the sexes, with higher levels of estrogen in women being one of the reasons they are more susceptible to autoimmune disease (while also having stronger immune responses overall.) However, in men, genetic susceptibility built into their genes and high stress life situations could be enough to trigger lupus. This is not a guarantee – there have been many cases of identical twins where only one develops lupus. 

Some possible other environmental exposures include traumatic situations (such as combat, natural disaster, or major life events including divorce, deaths in the family, or a high-stress job.) Exposure to chemicals, silica dust, ultraviolet radiation, viral infections, overexertion to the point of exhaustion, and even surgery. Anything that causes stress to the body and mind has the potential to trigger the series of events that lead to lupus developing. 

Both men and women can have genes that predispose them to developing lupus. However, many of the genes for immune system regulation are on the X chromosome, possibly giving women a “double dose” of vulnerable genes if they inherit them.

Sex Hormone Differences and Lupus

Hormones cause different effects on the immune system. Estrogen and progesterone are associated with higher immune system activity, while testosterone is associated with lower activity. More accurately, estrogen is an immune system modulator, meaning that it can ramp up or down the activity of the immune system.

If immune system cells are reacting improperly to estrogen (due to genes that change the receptor for estrogen, for example,) then the effects would be magnified in females versus males. Other hormones that regulate the immune system, such as prolactin and progesterone, are present at higher levels in females, as well. Some research implies that the vulnerability to autoimmune diseases is the flip side of the stronger immune systems and fiercer immune responses that females often have. The stronger immune response protects the body, but when regulation falls short and it starts targeting the body’s own cells, this is also made stronger and more damaging. 

Notably, hormone therapies, including HRT for gender transitioning, can change the immune response – a small study reported that transgender women with lupus appeared to develop their lupus or saw their symptoms worsen after estrogen treatment. The one transgender man in the study also reported that his lupus symptoms improved with testosterone treatments. 

However, many men with lupus do not have unusual levels of estrogen, and do not always have low testosterone levels. Males with lupus don’t have unusual sexual desire or performance (aside from fatigue and pain,) and their fertility isn’t always affected by lupus. Both can be lowered by certain lupus medications, however. 

This points to the hormone differences not being a be-all end-all for developing lupus.

Kidney Failure, Men, and Lupus

Both men and women have flares, and experience most of the same symptoms, including mouth and skin symptoms. SLE where multiple organs are effected at once is slightly more common in men. 

Kidneys filter out extra fluid, salts, and waste products from the bloodstream, turning them into urine which is then removed from the body. Kidneys also manage hormones associated with the bloodstream and bone production, such as erythropoietin and calciferol (also known as vitamin D.)

 Kidneys are vital for keeping the blood chemistry of the body balanced. When things start to go wrong in the kidneys, such as through lupus nephritis damage, waste products build up in the blood and effects the whole body. The fluid balance is also sent out of whack, leading to excess fluid leaking into the surrounding tissues and causing swelling. One kidney does enough work to take care of the body, meaning that, if the damage is noticeable, then both kidneys are affected. This is very frequent in lupus, as it attacks and damages both kidneys at the same time.

Kidney failure is defined as the kidneys being so damaged that they only work at 15% efficiency and can’t filter the blood properly. 15-20% of lupus cases lead to kidney failure even with treatment. Dialysis is a medical procedure that cleans the blood in the kidney’s place, but it requires frequent hospital visits to maintain. Some people are able to solve the problem more permanently, however, by getting a working kidney donated to pick up the slack.

Because a person can live without one kidney, it can be donated by a match (often a relative) with few complications outside of the operation.  The kidney transplant itself usually takes 3-4 hours as the new kidney is connected up to the blood vessels and ureter. The old kidney is not removed, generally. 

Other Reasons for Sex Differences and Lupus

Stress causes the body to go into survival mode, which can seriously strain and damage organs throughout the body. However, for people with lupus, the most frustrating aspect of stress is that it changes how the immune system functions, not only putting it on high alert to attack, but making it more likely to attack the body’s own cells and cause flares. In many cases, chronic stress is what causes lupus symptoms to emerge for the first time, leading to a person developing lupus. This can include studying, major life changes, and trauma of both the physical and psychological kind. Not only does stress lead to the development of lupus, but it can make the symptoms worse – which, of course, causes more stress  and creates a feedback loop that is difficult to break. Stress, even from one’s childhood, is known to cause worse outcomes of lupus and be a risk factor for developing other conditions such as rheumatoid arthritis.

Symptom Differences for Men: How Different Are They?

Some researchers believe that the differences in symptom intensity between men and women might actually be “selection bias.”

Because of societal expectations of masculinity, men often refuse to visit the doctor for a checkup unless heavily pressured to do so by a significant other, or when the symptoms are so severe that they have no choice. Many men feel uneasy about going to the doctor and, to them, admitting their symptoms is ‘weakness.’ It also takes time, and many men feel that going to the doctor is a low priority task – they could be doing something else in that time! Men (and women) sometimes don’t mention symptoms to their doctors because they aren’t ready to hear the diagnosis. It’s very complicated, but because of this, there are likely many men who are not diagnosed with autoimmune disorders such as SLE, among other conditions. 

Psychologically, it is often difficult for men with lupus to come to terms with having a ‘women’s disease’ like lupus. The society we live in also puts a lot of emphasis on a man’s ability to work, in particular, to do physical labor or exercise. Not being able to do these things because of lupus can be very emotionally taxing. In addition to hair loss from lupus, embarrassment may be a major factor.

In addition, because lupus in men is rare, doctors will only diagnose it in men when the symptoms are intense enough for it to be clear that it is lupus. Kidney failure and neurological symptoms may be more common because they are the most noticeable and urgent symptoms of lupus, which can trigger a closer look by doctors in the know, which can lead to a diagnosis.

However, this does not account for all of the differences: For example, the age range that lupus is diagnosed is correlated with the natural fluctuation of estrogen and testosterone and the changes in immune activity that naturally occur over one’s lifespan.

Diagnosing Men with Lupus

SLE is often diagnosed late in men, partially due to it being uncommon in men. SLE is normally caught at around 45-60 years of age, when the symptoms are at their highest point, compared to women where lupus is generally caught at 20-30 years. 

Men with SLE are more likely to have serious cardiovascular issues, such as anemia and strokes, and to have neurological symptoms like seizures. There is also some evidence for kidney issues, as in lupus nephritis, being more intense in men, but researchers caution that the sample size is very small. Men with more kidney damage might be more likely to be diagnosed correctly, for example, or to feel sick enough to go to the doctor in the first place. Overall, though, the symptoms are the same.

Lupus in men can also show up as fatigue, pain, swelling, and headaches. It can also appear as cardiovascular issues (heart disease, stroke, anemia) serositis, kidney disease, and the classic malar rash. Some symptoms of lupus are more severe in men, particularly kidney damage.

If a man has these symptoms, then it’s a good idea to get an antinuclear antibody test (ANA) detects these antibodies, and is an important tool for diagnosing lupus in men and women. 97% of people with lupus have antinuclear antibodies detected, while 5-20% of people in the general population will register a positive. 

An antinuclear antibody test doesn’t diagnose lupus on its own, but helps to confirm that lupus is a possibility, so it’s a good first or second step towards diagnosis.

Treating Men for Lupus

The treatment for lupus is the same for men as it is for women. The side effects of some medications may be different however – Cyclophosphamide, for example, has a side effect of potentially lowering sperm count. 

The immunosuppressant medication Voclosporin might be especially important. Voclosporin is being specifically developed for people with lupus nephritis, because it is less likely to damage the kidneys further, while also preventing the symptoms of lupus.

In addition to medication, therapy might be especially important for men. Therapy provides a safe space to process emotions and mental traumas. Men often do not have such safe spaces available to them, or do not feel like they belong in such spaces. Healing the wounds of mental traumas not only reduces the stress that might trigger a lupus flare but helps people with lupus develop strategies and ways of thinking that may reduce the stress load of their lives.

Autoimmune diseases are a broad collection of over 100 diseases characterized by autoimmunity — a condition where the body’s immune system attacks the body’s own healthy cells. These conditions are known to be complicated to diagnose and multifaceted in their presentation. They also disproportionately impact women and particular racial and ethnic groups. In fact, 78% of people with autoimmune disease are female. 

Both of these disproportionate prevalences are even more pronounced when looking at lupus. 9 out of 1o people diagnosed with lupus are women. African-American, Hispanic, Asian, and Native American women are also 2x to 3x more likely to develop lupus as compared to Caucasian women.

But why?

Lupus and the Genetic Connection

During the diagnosis process, a rheumatologist will often ask if anyone in your family has been diagnosed with any autoimmune disease. This is because genetics is known to be a major factor for the diseases. Genes are the blueprints of the body, and all of our cells use these blueprints. However, we each have different versions of these blueprints, which we inherit from our parents. Even identical twins have differences in how the body uses these blueprints, which is called gene expression. Differences in gene expression can come about due to changes in the environment (including smoking or exposures).

Essentially, your genes make your susceptible to a host of diseases. Then, in response to triggers, the symptoms of the disease may begin to manifest. Triggers can include:

• medications and drugs
• pollutants or environmental exposures
• stress
• infection

The chain reaction begins, which leads to the development of lupus and the build-up of symptoms.

 

Genetic Variations

Over 30 genetic variations have been linked to lupus.  Unsurprisingly, most seem to involve the regulation of the immune system or specific proteins found in the immune system. It is thought that many of these immune system genes might be on the X chromosome, and this could be why men generally have more genetic markers of lupus. Men only have one copy of the X chromosome, while women have two copies. If both copies have vulnerable genes, she could get a “double dose” of the vulnerable gene, or simply have more chances to have that gene expressed.

Calcineurin

For women, calcineurin seems to be one of the key proteins that are different in women with lupus compared to men and healthy women. Calcineurin activates T-Cells, one of the parts of the immune system that causes the symptoms of lupus. Calcineurin inhibitors are medications that treat lupus very well because of this connection, but they are also regulated naturally in the body by the hormone estrogen. One reason that calcineurin might be less regulated in women is because of the higher presence of estrogen in their bodies. Women who are predisposed to lupus might have different blueprints for calcineurin that have unusual estrogen receptors and make their immune system more likely to misbehave in the presence of the hormone.

However, estrogen is not the only sex-related hormone involved in autoimmune disease.

What are Hormones?

Hormones are chemicals that different cells in the body use to communicate with each other. By communicating, cells are able to work together to perform the many tasks that our bodies need to function. The body regulates everything from mood, to metabolism, to the immune system’s response with hormones.

Hormone levels are essentially consistent from one person to another. A person’s environment, mental state, and health can cause fluctuations. However, the family of hormones that control sexual function, reproduction, and development are different between the sexes. These hormones include:

• estradiol
• estrogen
• testosterone
• progesterone

The same hormone can fill many different roles, triggering different responses depending on the cell. The “sex hormones” are responsible for sex differentiation and reproductive behaviors. They also control a wide range of effects throughout the body. One of these effects is immune system regulation.

Some researchers think that sex hormone levels, and in particular high levels of the hormone estrogen, might be the reason that females have higher rates of SLE and other autoimmune disease.

Estrogen, Progesterone, and Lupus

Women have higher levels of estrogen, prolactin, and progesterone in their bodies. Estrogens are hormones thought to be involved with SLE. Some of the understanding of how these hormones work in lupus comes from research conducted in mice. Mouse models show that the way estrogen regulates progesterone may be impaired in people with lupus. Both estrogen and prolactin effect the production and regulation of B-cells,  one of the other immune system cells that misbehaves in lupus. In particular, estrogen and prolactin effect “tolerance,” the process through which the immune system gets rid of B cells that target the body.

For women who are already at risk of lupus due to their genetics, their sex-linked hormones, along with stress, may push them over the edge into developing lupus. Interestingly, this same vulnerability to autoimmune disease may also be responsible for the stronger immune systems found in women.

Could the genetic vulnerability to lupus turn this advantage into a disadvantage?

 

Social Determinants of Health, Women, and Lupus

African American and Hispanic people have symptoms of lupus begin at a younger age. They may have access to specific genes that make them more vulnerable to lupus. However, they also face additional challenges that increase their risks.

Some of the disproportionate impact of lupus on women may be related to social determinant of health. Women, especially BIPOC women, bear heavy societal and stress-related burdens in our society. In measures of economic stability, education access and quality, healthcare access and quality, women often face serious inequalities. These inequalities and difficulties limit access to resources, cause stress, and can seriously effect health – all factors that contribute to lupus. 

However, for women, biological factors are also involved.

Pregnancy and Lupus

Does lupus effect pregnancy? Yes. One of the challenges for managing lupus is maintaining fertility and ensuring safe pregnancies. The hormone and physical changes that occur in pregnancy can cause flares, which can in turn cause pregnancy complications.

However, most people with lupus are able to carry to term successfully, and the baby is generally healthy. While all lupus pregnancies are considered high risk, less than 50% have complications.

Risks of miscarriage and preeclampsia are increased for people with lupus. Preeclampsia is elevated blood pressure, swelling, and improper kidney function (resulting in protein in the urine, or proteinuria). Research has shown that the worse the lupus symptoms, the more challenging the pregnancy and outcomes.

Having the right people on your treatment team can help – and sometimes lupus symptoms even decrease during pregnancy.

Tips for Women with Lupus

Exercise is important for all people with lupus, and it has many benefits. Women are advised to drink plenty of water, eat a healthy diet, and maintain a healthy weight.

During pregnancy, folic acid prenatal vitamins are recommended, and all SLE medications should be maintained – even hydroxychloroquine. These have been shown to help prevent lupus flares. Discontinuing medications can lead to increased fatigue and joint pain. Azathioprine is considered the safest immunosuppressant as  fetuses cannot process the drug. Note: As with all medications, speak with your lupus treatment team and ensure that all specialists are aware of your active medications.

Hormone replacement therapy might be a potential treatment for lupus because of the effects of hormones on the immune system, though people with lupus presently undergoing hormone replacement therapy should be aware of this risk. For people already diagnosed with lupus HRT and birth control pills (oral contraception) have not bene linked to an increased risk of severe flares.

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.

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.

An Interesting Microbiome Study

A new study from the New York University (NYU) Grossman School of Medicine revealed that higher levels of specific species of bacteria in the guts of women with lupus are associated with serious symptom flares.  

The study followed a total of 16 women from a variety of socioeconomic and racial backgrounds over 4 years. The association occurred in 5 of those women (30% of patients.) They were compared to 22 otherwise healthy female volunteers. 

This was confirmed by a similar study on 117 untreated patients with SLE in China, compared to 52 treated SLE patients and 115 healthy controls. 

Most of the women who were affected by the bacterial blooms often had lupus nephritis symptoms, with one having joint inflammation symptoms. The reason for this overlap of symptoms is unclear.

What is the Microbiome?

Researchers think that part of the reason why the women experienced the flares is because the body interacts closely with the microbiome. The body reacts to its microbe companions by regulating the immune system by activating or de-activating certain genes in the DNA. 

For decades, scientists have known that the bacteria and other organisms that live in our stomach and intestines have a lot to do with how easy it is to maintain a healthy weight. This living ecosystem inside us is called the gut microbiome , and it is vital to our health. 

The gastrointestinal tract – the mouth, esophagus, stomach, and intestines – are a sensitive place for people with lupus. 

Food enters through the mouth, where it is chewed, swallowed down the esophagus, and enters the stomach, where it is digested. In the intestines, nutrients and water are absorbed into the bloodstream to be used by the body. Every part of this cycle, from the teeth in the mouth, to the muscles that move the food through the system, to the enzymes that are secreted by the body to break down the food, to the walls of the intestines that absorb nutrients and keep invading bacteria out – all of these parts can be affected by lupus. Medications can also influence how these organs work, and the bacteria that live there.

The microbiome of the gut live mainly in the small and large intestines, though some acid-tolerant bacteria can live in the stomach. The mouth also has its own microbiome, affected by the air you breathe, anything that passes through the mouth, and dental hygiene.  

In mice, just changing what species of bacteria live in their guts can drastically change their weight and health, even switching body types between mice. While gut microbiome transplants are not currently recommended for humans, we can change a lot about our microbiome by changing our diets and literally feeding it differently.

What Species of Bacteria Was Associated With Flares?

According to the NYU study, Ruminococcus blautia gnavus was the bacteria associated with lupus flares.

Ruminococcus is a gram-positive bacterium that grows in areas that have little to no oxygen available (also known as an anaerobic bacteria.) It was named after cows, which are ruminants, where it was first discovered. 

Various species of ruminococci are an important part of the gut microbiome, though its role in the ecosystem of the gut is still mysterious (though it might be important for making sure that other “good bacteria” are able to get a foothold in the gut.) Some species might also produce antimicrobial substances that help to kill invading bacteria before they can invade the ecosystem.

So, while the bacteria is supposed to be in the gut ecosystem of both children and adults, it seems to cause trouble when its numbers suddenly increase and it takes over parts of the microbiome, known as a ‘bloom.’  The ruminococcus bacteria possibly triggered the expression of certain genes, which led to an immune system reaction that caused inflammation and the disease to flare.   

Overpopulation of R. gnavus is associated with other diseases as well, including Crohn’s disease, ulcerative colitis, ADHD, anxiety, migraines, and even epilepsy. While researchers still don’t know why, it’s clear that R. gnavus is an important part of the ecosystem with huge effects on the body. It’s even been associated with the development of childhood allergies, implying that it plays a key role in modulating the immune system’s responses.

How to Take Care of the Microbiome

We still don’t know all of the benefits that our gut microbiome gives us, but we know that it is important. And, for people with lupus, maintaining the health of their gut microbiome could reduce their symptoms and flares.

Eating foods rich in fiber, omega 3 fatty acids, vitamin b and vitamin A will help the gut microbiome thrive.

Trying probiotics  – which are natural sources of the bacteria in a healthy microbiome to shore up the populations in the gut – might also be beneficial to the gut microbiome. Some studies indicate that they could directly help reduce inflammation in the kidneys of female patients with lupus. Obviously, the studies are small, so take it with a grain of salt, but according to a Lupuscorner survey, 75% of the people who tried probiotics found them to be helpful in reducing their symptoms and improving their health – so incorporating probiotics could be worth it. 

Low carbohydrate and low-fat diets are, overall, linked to healthier bacteria in the gut. Low-processed diets such as the autoimmune protocol diet https://lupuscorner.com/autoimmune-protocol-diet-aip-for-lupus/ or the Mediterranean diet are also beneficial to the gut microbiome. 

Excess sugar can, conversely, make the microbiome less healthy in the gut in addition to the other problems that excess sugar causes. The microbiome in the mouth is linked to the gut, too (through swallowing, in good part,) and sugar has a huge effect on this microbiome as well.

Celiac disease is a potential issue for people with lupus and their guts so it is also worth looking into, just to be sure.

In all cases, be sure to bring up any diet or treatment options with your doctor before making any major changes as they may be aware of alternative treatments or potential interaction effects.

A Lupus Warrior’s Takeaway

People with lupus have unstable microbiomes, scientists conclude, though it’s unclear whether it’s a cause of the disease or an effect of the disease. It is clear that it, at the very least, is involved in a feedback loop where they end up affecting each other, so treating the disease and taking care of the microbiome will improve health overall.

Systemic Lupus Erythematosus (SLE) is an autoimmune disease that affects the entire body. Every person with lupus has different symptoms, but stress is known to make all of the symptoms of lupus worse, and even to lead to flares, periods of intense symptoms that can lay a person with lupus low.

SLE happens when the immune system starts acting wrong. The immune system functions by recognizing invaders such as bacteria and viruses and then mobilizing an immune response to clear them out. In autoimmune diseases, this process is not working properly. 

Stress and autoimmune disease are related because both psychological and physiological stress cause a release of hormones related to stress. These hormones increase the production of cytokines, molecules that have several functions in the immune system. Inflammation, the alarm state of the immune system, happens more often in autoimmune diseases such as lupus, and the body’s own cells are attacked. The release of stress hormones causes issues with immune system regulation, which leads to damage and inflammation in the immune system. 

So, what types of stress lead to lupus, and does stress actually cause lupus?

What Stresses Lead to Lupus?

Stress can take the form of depression and anxiety, so it is important for doctors and researchers to look at more than just the test results. A patient’s life affects their health outcomes as much as or more than their medications. You can read more about the relationship of quality of life and disease severity here.  Worse, stress may even cause lupus!

In a retrospective cohort study of 15,357 adults in 1995-1997, researchers found that people who experienced trauma and stress in childhood were more likely to develop and be hospitalized for autoimmune diseases later in life. 64% of people who experienced hospitalizations for autoimmune disease reported at least one adverse childhood event in their past. The researchers calculated that having 2 or more adverse childhood experiences increased the risk of hospitalization by 70% and the risk of developing rheumatic disease by 100%! 

Other studies such as this 2018 Swedish study looking at patients with stress related disorders, their siblings, and a control group of people with similar lives and lifestyle (a matched cohort study) support the finding that stress-related disorders and traumas are associated with developing autoimmune disease. You can read more about the relationship between trauma and lupus here.

Lupus appears to be passed down in families and is especially prevalent in black, Hispanic, and Native-American women.

Some researchers think that, because women and BIPOC (Black and Indigenous People of Color) are also historically stressed, traumatized, and overloaded by societal expectations and racism. While genetics definitely are a component, people in these groups often are not given a fair shake in their social determinants of health: economic stability tends to be lower, as well as education access, quality, healthcare access and quality, their neighborhood characteristics, and the pressures of society. You can read more about the social determinants of health, here. Higher levels of stress in these groups may also contribute to their higher rates of lupus. 

It is important to keep these higher levels of stress in mind and to treat the stress as well as the disease. As it turns out, there is evidence that treating stress-related disorders such as PTSD or depression with therapy, antidepressants, and other medications can also reduce the risk of autoimmune disease. 

The stress can also be as ‘minor’ as work, life, and sleep-related stress. In a study on sleep deprivation stress and the immune system, researchers found that (in mice,) more of two immune system components involved in inflammation were found in the bloodstream, Interleukin 12 and 23. Since stress seems to increase their amounts, the researchers believe that they may be a way to diagnose lupus or, even, a potential target for certain therapies. 

So, stress can cause autoimmune disease to rear its painful face, and disease can cause stress with pain, fatigue, and other symptoms. It is difficult to tell what is causing stress to intensify the symptoms of lupus, but it is clear – something needs to be done.  Breaking the cycle of stress is important for people with lupus, and there are many methods that people with lupus have at their disposal.

Treating Stress and Lupus

Stress is treatable, though what treatments are most effective depend on the person, the source or sources of stress, and the effects of the stress. Managing stress and flare triggers are something that all lupus warriors have to manage, and there are a few techniques that can be used by nearly everyone!

Meditation, including mindfulness meditation, can have an enormously beneficial effect on stress and people with lupus. Even if symptoms do not improve, meditation of various sorts has been associated with reduced worrying, improved memory and focus, and better emotional resilience – fewer ups and downs. There are apps dedicated to assisting with meditation, and various types of meditation, so it’s not difficult to find one that is right for you or your life. You can read more about meditation here. 

Therapy, such as cognitive-behavioral therapy, is a type of talk-based therapy that focuses on creating good coping habits and reducing thoughts related to anxiety and depression. Art therapy and writing therapy are known and noninvasive methods for stress relief that have been proven to improve mental health immensely. Since anxiety, depression, and trauma all contribute to stress – and also are often made worse by lupus – therapy can help people with lupus in many ways besides reducing stress. Artificial reality is a new method of therapy that shows promise both as emotional healing and even pain relief – read more about it here! 

Alternative medicines such as acupuncture and massage may also be useful. Although the research on them is sparse, what research there is seems to support the claims that these treatments reduce stress and chronic pain when done correctly. 

Healthier diets and safe physical activity are are very important for people with lupus for many reasons, including stress reduction.

Not every stress-relief strategy will work for every person, so try a few until you find one that works.

Remission is a term used to describe the reduction, into nothing, of the symptoms of an autoimmune or chronic disease for three or more years. In lupus, remission includes the symptoms and the blood markers of inflammation as well, so the symptoms are not just being “masked” or “endured.” In an analysis of people with SLE over 32 years, 14.5% of the 532 people were able to achieve complete remission for 3 years. 

During remission, people with lupus may feel normal, aside from the side effects of medication. However, although medication can be tapered at this time, it shouldn’t be stopped without consultation with a doctor, because the lupus has not gone away – just dormant.

Flares and Remission

Medication can help make remission an achievable goal, but there are many factors involved and remission in lupus can be unpredictable making lupus treatment something of a puzzle. Every person with lupus is affected by their diet, environment, and genetics, and not all of these can be controlled. This is remission, too, not a cure: Remission can last as short a time as 3 months (not even meeting the definition of remission!) and flares can happen even after 10 years without symptoms, making long-term management and treatment of SLE important.

Flares are the sudden increase of symptoms in response to something that triggers the inflammatory response. Triggers are unique for each person, but a few common flare triggers are allergens, temperature, diet and stress. People with lupus often figure out their own triggers through trial and error, but not every trigger is completely avoidable.

How to Achieve Remission in Lupus

The current treatments for lupus focus on reducing symptoms and increasing quality of life. This includes protecting the organs from damage and reducing pain, but also reducing the inflammation responsible for the symptoms of lupus. This can sometimes lead to complete remission of symptoms. 

Lupus medications include antimalarials, glucorticoids, and corticosteroids. Medication is an important part of treatment, and one of the best ways to make your way to remission. You can read more about medications here. Diet can also be an important tool for achieving remission. 

However, even if complete remission isn’t possible, partial remission can leave you with more energy and ability, known in the community as “spoons,” to take care of yourself and do the things you enjoy. Treatment and a healthy lifestyle can also keep you out of the hospital, which can be costly in both time and money. This is why treatment usually focuses on finding a way to give people with lupus lighter symptoms, not complete remission. 

A Lupus Warriors Takeaway

Remission is very possible for people with lupus, but the goal should be to live your life with minimal pain and fatigue. Medication is an important part of this, but so is exercise, diet, and avoiding flare triggers.