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

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

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

What is Lupus Psychosis?

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

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

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

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

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

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

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

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

How is Lupus Psychosis Treated?

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

Can Lupus Medications Cause Psychosis?

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

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

How Do You Diagnose Psychosis?

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

Systemic lupus erythematosus (SLE) is an autoimmune 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.

The need for new research

Two factors are increasing the study of non-medication-based treatments for pain:

1. Increased understanding of the prevalence, imposed physical limitations, and economic impact of chronic pain
   • 65% of people with lupus list chronic pain as the most difficult aspect of lupus
   • ⅔ people with chronic pain reported decreased ability to exercise, sleep, perform household chores, or drive a car
   • “The financial cost of chronic pain is roughly the same as cancer or cardiovascular disease.”
2. Overdose and death from opioids has become a major health crisis
   • “Every day, more than 130 people in the United States die after overdosing on opioids.”

New prescribing guidelines aiming to reduce opioid use disorder can also make it challenging for people with chronic pain to get treatments

Mindfulness-based stress reduction research

A January 2019 published meta-analysis in Evidence-Based Mental Health explored the effectiveness of alternative chronic pain treatments. The researchers analyzed 21 randomized controlled trials (12 of which met subsequent quality standards) on mindfulness-based stress reduction, cognitive behavioral therapy (CBT), and chronic pain.

Chronic pain as a result of lupus was not specifically studied. Chronic pain sources included musculoskeletal pain, fibromyalgia, chronic lower back pain, rheumatoid arthritis, and others. 

Mindfulness-based stress reduction and CBT showed “clinically important advantages relative to control” for physical functioning, pain intensity, depression. This is particularly fascinating as control participants in some study arms received standard-of-care pain management, including medications.

What is mindfulness-based stress reduction?

As the name suggests, mindfulness-based stress reductions are interventions that help reduce stress by cultivating an awareness of the current moment (mindfulness). Meditation, breathing exercises, and yoga are 3 examples of mindful exercises.

The goal of these exercises is to encourage a body awareness and bring the focus to the present. These strategies make it easier to recognize body sensations, emotions, and thoughts and then to let them go.

In the research paper discussed above, the mindfulness exercises were administered by certified MBSR teachers or other trained professionals.

4-7-8 Breathing

You can try these strategies out for yourself! A good one to start with is mindful breathing — also known as diaphragmatic breathing or abdominal breathing. The goal of this exercise is to pace your breaths and generate a calm feeling. 

Quick tips:

• Sit with your back straight
• Try to keep your tongue touching your gums just above your front teeth during the cycle. When you exhale with your mouth open, you will breathe around your tongue

Steps:

1. Exhale completely through your mouth — make a whoosh sound
2. Close your mouth and inhale through your nose. Count to 4 in your head
3. Hold your breath and count to 7
4. Exhale completely through your mouth, making a whoosh sound, and count to 8
5. Repeat until you complete the cycle 4 times

To start, try to complete the exercise twice per day. As you continue, you can add daily repetitions or increase the number of breaths that you take. 

Looking for other mindfulness exercises? Check out these 22 individual and group strategies

Chronic pain and medications

Medications will still continue to be an important part of the toolkit in the battle against chronic pain. It is not always possible to cure chronic pain. Work with your lupus treatment team to establish a safe and effective regimen. Even over-the-counter pain medications can be dangerous when taken at high doses or when taken in conjunction with other medications. Before starting any new medication, talk to your rheumatologist.

Prescription-strength medications, including opioids, are used in cases of severe pain. While opioids are strong pain relievers, they also come with a high risk of dependence and addiction. 

Opioid overdose risks are increased for people with reduced kidney or liver function. Be sure to check out these resources if you or a loved one is using an opioid for pain management:

• Safe Use, Storage, and Disposal of Opioid Drugs — by the American Academy of Family Physicians
• Opioid Overdose — by the U.S. National Library of Medicine

Over-the-counter (OTC) medications

OTC medications are available without a prescription, though they may still come in a variety of dosages. Be sure to read the labels to ensure you are taking a safe dose for your body weight. Always bring up new medications with your treatment team.

There are 2 main types of OTC pain relievers:

1. Acetaminophen
   1. Tylenol
2. Nonsteroidal anti-inflammatory drugs (NSAIDs)
   1. Aspirin
   2. Ibuprofen (Advil; Motrin)
   3. Naproxen (Aleve)

Virtual Reality and Mindfulness

Normal mindfulness practices have been well-documented and are beneficial to mental health. However, mindfulness practices can often be difficult to adopt. This can be due to environmental factors, personal distractors, or simply the inability to find the right avenue. Virtual reality may be the answer, by providing an immersive environment for practicing mindfulness techniques. It can also aid in orienting users to the present moment, without distractions, within a tailored virtual setting.

Research and understanding has been limited, making it difficult to draw assertive conclusions. A study in Australia studied a sample of 37 participants from the general population. They trialed a VR mindfulness app in a controlled laboratory setting. The VR app presented users with an omnidirectional video of a peaceful forest environment with a guided mindfulness voiceover that was delivered by a male narrator. Results showed that overall state of mindfulness significantly increased, and there were no notable changes in negative emotion.

Virtual reality may be a new way to achieve mindfulness, by providing guided meditation and an immersive environment. Stay updated for new research and studies into the VR and mindfulness field.

Updated on November 3, 2020.

Vitamin C and the Immune System

For Lupus Warriors, taking care of the immune system is crucial. As mentioned earlier, a lack of vitamin C can lead to scurvy, a serious immune deficiency.

Several cells of the immune system accumulate vitamin C and need the vitamin to perform their task, especially phagocytes and t-cells. Therefore, vitamin c is not a preventive remedy, but rather a necessary one to ensure the immune system’s proper function. In the end, the immune system is what protects the body against illnesses.

Repairing Tissues

Topical vitamin C is the new essential skincare ingredient to keeping skin looking young and refreshed. This is because vitamin c has immense capabilities of building and rebuilding the body’s tissues, like how it encourages the growth of collagen. Supplemental vitamin c might assist the body in repairing damaged tissue from flares.

How Much Vitamin C Should One Take?

The Institute of Medicine (IOM) has created a set of reference values for specific nutrient intake levels, and that includes vitamin C. The guidelines consider average daily nutrient intake from both supplements and foods, according to the Recommended Dietary Allowance (RDA). These guidelines meet the standards for more than 97% of healthy individuals. Below are the recommended intake amounts for vitamin C:

The debate is on whether or not daily low-dose vitamin c is better for the body than a sporadic one time high-dose of vitamin c. Some studies of IV high-dose vitamin C in patients with cancer have shown improved quality of life, as well as fewer side effects.

High-Dose Vitamin C

High-dose vitamin C may be taken:

• by mouth, typically in pills or lozenges
• given by an intravenous (IV) infusion (through a vein into the bloodstream)
  • When taken by IV infusion, vitamin C can reach higher levels in the blood than when the same amount is taken orally

Some clinicians believe that high-dose vitamin c can help combat lupus flares from the onset or aid in recovery. This belief is rooted in the medical community’s knowledge of the regenerative properties of vitamin C.

Vitamin C in the News

The Roles of Vitamin C in Skin Health

Normal human skin contains high levels of vitamin C, which stimulates collagen synthesis and assisting in antioxidant protection against UV-induced photo-damage. Vitamin C is a powerful antioxidant that can neutralize and remove oxidants. Such as those found in environmental pollutants and after exposure to ultraviolet radiation. This activity appears to be of particular importance in the epidermis, where vitamin C is concentrated in the skin. Find out more, here.

Vitamin C and Heart Health

Can vitamin C help reduce the risk of cardiovascular disease (CVD)?

Researchers explored the role of vitamin C on heart health in a large number of studies and subsequent meta-analyses. These studies suggest that vitamin C can favorably affect blood pressure and endothelial function, two risk factors for CVD.

Observational studies have also noted increases in CVD risk among people with low plasma concentrations of vitamin C.

Discover more about vitamin C and heart health, here.

The Discovery of Vitamin C

“Scurvy was a common problem in the world’s navies and is estimated to have affected 2 million sailors.”

A Scottish doctor, James Lind, conducted one of the first ever clinical trials to develop the theory that citrus fruits cured scurvy. Still, at the time of the study in 1747, researchers had no concept of vitamins.

“Axel Holst and Theodor Frölich produced scurvy in the guinea pig, which like humans requires vitamin C in the diet. In 1928, Albert Szent-Györgyi isolated a substance from adrenal glands that he called ‘hexuronic acid’. Four years later, Charles Glen King isolated vitamin C in his laboratory and concluded that it was the same as ‘hexuronic acid’.” Learn more here.

A Lupus Warriors Takeaway

To ensure you are getting enough vitamin C, look at your diet. Be sure to eat fruits and vegetables, especially citrus fruits and dark green vegetables.

Generally speaking, even high doses of vitamin C are easily tolerated, but with any increased amount be sure to watch for adverse reactions and speak with your lupus treatment team about adding anything to your treatment plan.

Updated on September 14, 2020.

“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!

Stress, travel times, climate, and much more can impact traveling. Let’s take a look:

Long Transport Times

Traveling in a plane or a car for a long period of time can wreak havoc on anyone’s muscles. For individuals battling lupus, this scenario can seem particularly daunting as muscles and joints can easily stiffen and become achy.

Car rides typically give more control over stretching the body. They allow people to stop when desired. During car rides, make sure that there are plenty of stops to stretch the body— especially the legs and torso. If riding on a plane or train, it’s necessary to stand and stretch every hour. It’s even possible to stretch the legs while in the seat.

Stretching can be a great way to alleviate stress and help muscles stay limber when traveling. Common stretches that may help (even if you’re on an airplane!) include:

• Neck rolls
• Ankle rolls
• Seated twists

The Effects of Airplanes

Swollen Legs

It’s very common to experience enlarged feet and swollen legs while on a plane. Blood is collecting in the lower extremities because of the extended period of sitting. The swelling is also due to the pressure in the plane cabin. For individuals with heart problems, this actually is a real health concern—the swelling could lead to blood clots.

As mentioned previously, getting up and stretching especially the legs is a great way to get the blood moving again. Gently massaging the legs may also help to stimulate blood flow.

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Bloating

A surprising effect of flying is bloating. The pressure of the cabin and the lack of humidity can quickly pull fluid from the body. Some #LupusWarriors experience severe stomach bloating as a result of inflammation. This build-up of fluids in the abdominal cavity called ascites.

Although ascites is a severe symptom of lupus inflammation, it’s good to prepare for the usual abdominal discomfort that comes along with flights. For international flights, in particular, talk to a medical provider about antacids, seltzer water, other over-the-counter medications, or prescription medications to treat the discomfort of bloating and gas.

Dehydration

Nearly everyone who travels by plane will experience some dehydration. It’s very easy to become dehydrated — the cabin humidity levels are pretty much at zero. Dehydration can affect mental clarity, mood, the immune system, and the overall comfort of the body. Make a conscious effort to stay hydrated by drinking plenty of water.

It can be a good idea to bring an empty water bottle with you to the airport. After going through security screening, you can fill it up!

Fatigue

Another concern when traveling is fatigue. Extreme fatigue is even a diagnosable condition, chronic fatigue syndrome (CFS). CFS is a disorder that brings extreme physical fatigue and affects the mental clarity of an individual.

For #LupusWarriors who experience fatigue or CFS, remember that airports require a decent amount of time to navigate. The airline  recommendation is to arrive two hours early for domestic flights and three hours early for international flights. Security and check-ins require long standing times. Giving oneself an extra hour can make going through airports more manageable by having time to rest.

Jet lag can also be a major concern for #LupusWarriors that experience fatigue or CFS. Arriving a day early at a destination can allow for adequate adjustment to the time zone. (An early arrival can also help just about anyone acclimate to a different climate as well.)

Talking to a travel agent or an airport official might be worth the extra time and preparation. Special arrangements for assistive devices and inter-airport support (wheelchair support, assistive carts when traversing long terminals, and more) are readily available.

Planning

Planning is key to any travel plans. #LupusWarriors should really take this concept to heart and be extra cautious. Packing enough supply, like sunscreen, is good planning especially if something unexpected happens. Longer than anticipated walking times, late drivers, wrong turns — they are all part of the experience of traveling. Making sure you can be comfortable is essential.

Medical Kit

Gathering materials such as regular medicine, oral rehydration salts, anti-biotics, sunscreen, bug-spray, cough medicine and consolidating them into one bag or hard-case box is a good idea for easy locating in the case of preventive measures or minor emergencies.

Remember if traveling by plane to get travel size liquids and to put them in a clear, quart-size plastic bag for easy security screening.

List of Medical Institutions

Another way to prepare, especially for a true emergency, is researching and writing all the medical centers, hospitals, and even pharmacies on a single piece of paper. Having this list in a digital form should be done as well. And, having contact numbers for your lupus treatment team can be a huge relief in case of emergency.

This summer (and anytime you’re traveling) stay safe, take your time, and enjoy! ?

Janell

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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.

What does this have to do with lupus?

I will next go into the science, starting with how stress affects lupus and the immune system, how practicing mindfulness can help calm down the negative influences of stress on the immune system, and end up with some research results using mindfulness in lupus patients …. I hope to convince you to practice mindfulness as a vital lifestyle habit (along with diet, sleep, and exercise).

Stress increases the risk of developing lupus and other autoimmune diseases

Studies show that up to 80% of people who develop an autoimmune disease (like lupus) have significantly higher stress levels just before the onset of symptoms or diagnosis.

Stress increases the risk of developing SLE.

Patients with post-traumatic stress disorder are three times more likely to develop SLE than the general population. 

SLE patients have abnormal biologic responses to stress

We respond to stressful events with a “fight or flight” response. This is important for getting us out of danger and saving our lives. Imagine if you are in the house at night by yourself. You hear a “thump.” Immediately, your heart rate and blood pressure increase, your pupils dilate, your sensitivity to sound and sight increases, your bowels and bladder slow down to conserve valuable energy elsewhere, you breathe faster and deeper, and your muscles tense up, ready to run if needed. All of this occurs due to the “sympathetic nervous system” (SNS) firing up, preparing you to protect yourself (fight or flight response).

 Then you notice that your dog just knocked something over. You are safe, and you quickly put on a smile, pet your dog, and feel “normal” again quickly. 

SLE patients have been shown to have exaggerated SNS responses, which are associated with abnormal immune system activity. Appropriate, brief increases in the SNS are necessary to protect us (as in the above example). However, exaggerated, prolonged responses are unhealthy. 

Normally, our adrenal glands produce more significant amounts of natural steroids (called glucocorticoids) in response to stress. However, SLE patients do not have the necessary higher levels of anti-inflammatory steroids during chronic stress. This suggests they may be more susceptible to inflammation and increased disease activity during stress. 

Stress is associated with SLE flares

Ask anyone with SLE who gets lupus flares if they think stress plays a role. The vast majority will say “yes.” Research bears this out.

One study showed that experiencing daily psychological stress, especially regarding relationships with others and social duties, increases the chances of having SLE flares.

A recent California study showed that SLE patients with periods of increased stress ended up with higher disease activity than those who did not suffer from stress. The authors summarized: teaching lupus patients to respond better to stress is an integral part of treatment. 

Interestingly, another research study showed that it was not the stressful events themselves that were associated with lupus flares. It was actually how the patients perceived and responded to the stress that was associated with flares. This suggests that how an SLE patient responds to stress may be more critical than the stressful event itself. 

The good news is that anyone can learn to handle and respond to stress in a healthier way (that is where mindfulness comes into play).

Stress is associated with increased body inflammation

Interleukin-6 (IL-6) is a cytokine that increases inflammation. Cytokines are messages (in the form of molecules) that cells send out to other cells, communicating with them and telling them to act in a particular way. IL-6 tells white blood cells to become more active and causes inflammation. C-reactive protein (CRP) is a protein that the liver produces in response to stress. Your doctor probably measures CRP in your lab work to see if you have active inflammation. 

An Ohio State University study showed that caregivers who had experienced recent stress had higher levels of IL-6 and CRP than those who had not had recent stress. This suggests that stress may increase body inflammation.

This stress-induced inflammation could potentially increase the risk of developing systemic inflammatory diseases like SLE.  

Practicing mindfulness, meditation, and breathing exercises can decrease stress:

Healthy subjects who practice mindfulness end up having less body inflammation.

Mindfulness can reduce stress by causing more rapid clearance of cortisol, which results in less body inflammation. 

A review of 1600 people in 20 well-designed, randomized-controlled trials showed that practicing mindfulness reduced inflammation, modulated cell-mediated immunity, biological aging, antibody production, and how genes were turned off and on. 

What happens in SLE patients when they practice mindfulness?

We need a lot more research, but here is what a few studies show:

In a Korean study, 18 SLE patients were taught to practice mindfulness. They improved in anxiety, depression, and stress, but not disease activity. However, they calculated that they needed 45 patients to achieve statistical power. Though they did not have their target number of patients, they still showed positive health benefits from practicing mindfulness.

An Israeli group studied the effects of mindfulness in 26 patients. Fifteen were taught to actively practice mindfulness, and 11 patients received their typical lupus treatments alone. At the end of the study, there were greater improvements in quality of life (QoL) and pain tolerability in the mindfulness group. 

In Iran, 23 SLE patients completed 8 group sessions on practicing mindfulness. They were compared to 23 patients who received standard lupus treatments without practicing mindfulness. Those who practiced mindfulness ended up with improved QoL and psychological symptoms: 

The bottom line of what these small, preliminary research studies show is: Practicing mindfulness improved QoL, pain, anxiety, stress

This is good news since QoL and pain are two of the most challenging things to improve with treatment.

Call to action: What you can do to easily start practicing mindfulness

Keep in mind some simple facts about mindfulness:

Mindfulness is the opposite of “mindlessness.” When you are on autopilot and worry about how you are going to do something tomorrow, or you wish you had reacted a different way than you did to something yesterday, or you get all flustered when stuck in traffic and you say some words you usually would not say, or your mind races and worries about “stuff” and results in trouble sleeping… all of these are examples of “mindlessness” brain activity that ends up causing poor health effects on the body by abnormal activation of the ”fight or flight” response.

Mindfulness is:

• Purposefully putting aside a few minutes to “be in the moment.” 
• Be nonjudgmental about yourself and others
• Identify and name whatever is going on in life but also accept it
• Realize you have no control over some things. For example, worrying about what will happen tomorrow will not change what will happen.
• Be grateful for the important things in life

One of the most common and easiest ways to practice mindfulness is to do breathing exercises. Focusing on your breath forces your brain to calmly concentrate on the moment. Feeling the cool air come through your nose and fill up your lungs. Then feel the warmer air leaving the lungs out through the nose and attempting to relax the body while breathing out. You are not thinking about or worrying about anything, taking a few minutes to relax your mind. 

Doing this daily could help you with pain, deal with stress better, have a more positive outlook on life, and who knows… maybe help your lupus. We know that negative responses to stress are associated with lupus flares after the event. So, if you practice mindfulness daily and respond better to stress because of it, maybe this could result in fewer and less severe lupus flares. 

Here are some excellent YouTube videos that I highly recommend you start with:

• Goodful: 5-Minute Meditation You Can Do Anywhere
• Great Meditation: 5 minute meditation for focus 
• MindfulPeach: 5 Minute Breathing Exercise
• Tai chi and yoga are practices that incorporate mindfulness

How has this knowledge changed the practices of this rheumatologist?

• I recommend daily mindfulness as an essential health habit to my patients
• In addition to taking their medications regularly (especially hydroxychloroquine), I tell them that everyday use of mindfulness, exercise, eating an anti-inflammatory diet, and getting at least 7-8 hours of high-quality sleep every night is essential for the fight against lupus. Good thing? … mindfulness, exercise, and sleep are free!
• I practice mindfulness myself. I go to YouTube and search “5-minute mindfulness breathing” and try to do 5 minutes daily… I practice what I preach.

If you made it this far into the blog post… I wish you all the best in health and life.

Donald Thomas, MD

Author of The Lupus Encyclopedia