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

Symptoms of Inflammation-Related Anemia

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

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

 

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

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

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

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

Lupus and Anemia

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

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

Macrophages and Anemia

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

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

Lupus, Anemia, and You

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

Medications

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

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

Supplements

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

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

Blood Transfusion

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

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

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

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

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

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

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

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

The Skin Microbiome and Flares

The microbiome on our skin is responsible for blocking out bacteria, and also for body odor. In fact, body odor can be a good indicator that something is amiss in the skin’s ecosystem.  Hygiene and cosmetics, as well as the environment, hormone levels, medications, and the overall health of a person effect the microbiome. Ethnicity also seems to affect the microbiome, but the exact reason for this is unknown (possibly due to food or environment differences.) 

SLE causes changes in the structure of the skin that makes it easier for Staphylococcus aureus to colonize the skin there. Much like the leaky gut phenomenon broken down barriers in the skin let bacteria and bacteria byproducts into parts of the body it would otherwise not go. This can cause the body to develop targets and reactions to those byproducts and attack them, leading to inflammation and, as a result, increased lupus symptoms.

You can read more about the incredible skin microbiome here.

Bacteria involved with a healthy, well-regulated immune response include several species of lactobacillus bacteria. How they might calm inflammation is unclear, but a balanced microbiome, in the gut and on the skin, is clearly important. How bacteria cause autoimmune disease is often related to them having proteins similar to the body. When the immune system targets them, it also targets the body.

Skin Infections, Flares, and the Microbiome

People with lupus are more vulnerable to infections. Infections push the immune system into higher levels of activity, which, even as it attacks the bacteria, also drives up lupus symptoms. This causes a feedback loop of lupus symptoms making conditions more friendly for these bacteria, and then becoming more severe due to the infections of these bacteria.

Skin infections can show up as:

• Boils, raised, swollen pockets of pus
• Impetigo, a crusty rash with blisters that can be passed from person to person
• Cellulitis, which is redness, swelling, and sores on the surfaceof the skin from a deeper skin infection
• Ringworm, an itchy rash with ring-like spots. It’s caused by fungus like athlete’s foot, not worms.
• Eczema, a rash that causes itchiness and dry, scaly skin.

Rashes are a common symptom of lupus, so it’s important to keep an eye on them. 

Most bacterial skin infections are caused by bacteria in the Staphylococcus and Streptococcus families and can be treated with most antibiotics. Viruses like herpes and also certain fungi can cause skin infection, too. Ironically, the reason that an invasion of staphylococcus can cause a flare and get a foothold on the skin is because the immune system does its job: it recognizes the invader, but also causes it to ‘stick’ to the skin and break down some of the barriers between the skin cells and outside world. This makes it easier for staph to live on the skin and trigger the immune system even further. 

Skin infection is so common that the increased presence of Staphylococcus bacteria is sometimes used a way to confirm a diagnosis of lupus. Staphylococcus aureus was found in a study to occur in the noses of 21.4% of people with lupus (18 out of a population of 84) which was similar to  the frequency it occurs in people who do not have lupus. Staph seems to be highly associated with severe lupus, including lupus nephritis.

Some researchers are looking into how they can target Staph and other members of the skin microbiome for treatments

Other species of bacteria that are associated with lupus include E. Gallinarum and Ruminococcus gnavus. Salmonella and Escherichia coli are also known contributors to lupus and very dangerous diseases.

Antibiotics and Lupus Flares

So, can antibiotics reduce flares? If the flare trigger is the presence of bacteria like staphylococcus, yes. Lotions change the microbiome of the skin, making it more or less pleasant and livable for certain microbes over others.

According to a study in a mouse model mimicking Sjogren syndrome, an autoimmune disease that often occurs alongside lupus, changes in the bacteria on the skin can trigger autoimmune flares. In this case, the mice, who develop dermatitis due to a genetic mutation, had more Staphylococcus aureus on their skin than normal, non-modified mice. Antibiotics reduced the S. aureus on their skin and reduced the autoimmune dermatitis in the mice. Re-introducing S. aureus to the mice led to worsened autoimmune symptoms, including renal (kidney) disease, a common complication of systemic lupus.

The infection does not cause autoimmune disease, but it does exacerbate vulnerabilities that were already there, and may trigger the onset of lupus.

Keeping Your Skin Microbiome Healthy

Watch what cosmetics or skin-related makeup, lotions, deodorants, medications, or creams you use. Anything you put on your skin can affect the microbiome there, for good or ill. In addition, cosmetics or lotions that you are allergic can also trigger lupus flares. There are not really probiotics for the skin like there are for the gut but finding a lotion that works for you can help. Moisturizing can help keep the skin from cracking and breaking, reducing sores and lesions and preventing infection.

People with lupus are more sensitive to UV light and need extra protection from the sun to prevent flares and damage to their skin. This can be done with protective clothing or sunscreen. It’s advised to use mineral sunscreens, not chemical sunscreens. The reason given is because the chemicals can affect hormones and cause flares, but mineral sunscreens might have better effects on the skin microbiome.

Regular handwashing and keeping surfaces clean (especially those that make contact with sweat and skin) can reduce risks of skin infections. It’s important to find a balance of cleaning, however, because while cleaning your skin can reduce irritation and infection, it can also damage the skin if you do it too much.

A balanced diet full of antioxidants, including vitamin C (from citrus fruits,) and lycopene (abundant in tomatoes,) vitamin e (found in almonds and sunflower seeds) and omega 3 fatty acids (Fish, sunflower seed oil, walnut oil) is very good for the skin.

Staying hydrated can help keep the skin healthy, though usually if there are skin symptoms they are not in the areas that will benefit from drinking water. Pat attention to how your skin reacts to moisture in the air. Lotions and creams will work very well to protect and heal the skin but staying hydrated has many benefits.

Take care of your skin and the microbes on it, and it will take care of you.

For Lupus Warriors considering becoming pregnant, the health and safety of their future child is a major concern. Previous research has identified that children of people with lupus experience an increased risk of some neuro-developmental disorders. But, the impact of those risks on overall cognitive performance was poorly understood. A new study looked at the longitudinal school performance of children of Lupus Warriors to better understand the risks.

This study was performed by the Department of Public Health at Aarhus University in Denmark, and tracked 738,862 Danish children over 6 years. Participants were included from 1995-2008. The researchers assessed children’s performance on national school tests from 2nd to 8th grade.

312 of these children in the cohort had biological mothers with systemic lupus erythematosus (SLE). 1,235 children were born to mothers who took the lupus medication hydroxychloroquine. The researchers compared linked healthcare registries to identify the child and mother pairs, which was possible due to the healthcare policies in Denmark.

After assessment over those 6 years, there were no differences in tests of reading or mathematics between these children and the “baseline” children.

31 of the children who had mothers with lupus were also exposed to hydroxychloroquine or immunosuppressants in-utero, and these did have slightly poorer test results, but this result was not considered statistically significant. The researchers concluded: “This study indicates no major harmful effect on the child’s neurocognitive development from exposure in utero to SLE, hydroxychloroquine and/or immunosuppressants, as measured by school performance”

In other words, the children of mothers who had lupus were not found in this study to have a higher rate of reading issues or math difficulties. Where it relates to cognition as measured by school performance, these children were fine.

The Need for Research

Previous studies of the children of people with lupus found indications that SLE in pregnancy was linked to a threefold (3x) increased risk of learning disabilities or other cognitive development challenges. Specifically, children of Lupus Warriors experience an increased risk of autism spectrum disorders, dyslexia, and ADHD.

Researchers proposed that the high levels of inflammation and many of the medications involved in SLE could be the cause. And affecting the child while they are developing in the uterus.

A 1997 study evaluated 47 children of women with SLE and diagnosed learning disabilities, including dyslexia. A systemic review of these studies in 2017 also linked SLE in development to autism spectrum disorders, language delays, and speech disorders. A 2003 study saw some higher rates of learning disabilities in male children versus female children of mothers with lupus.

The children’s IQs were within a normal range, however. And, this study did not look at the long-term cognitive abilities of the children. Which is their ability to think, reason, and solve problems. These skills are vital to success in life.

Research in Context

Overall, the children of women with lupus do not appear to have high rates of long-term cognitive issues despite the other risks.

Pregnancy in lupus is something that should be considered with care for other reasons. Pregnancies with lupus have a higher risk of complications, which can independently increase the risk of learning disabilities. This increased risk of learning disability is more heavily influenced by genetics.

SLE also has a genetic component. Children of people with lupus are more likely to have lupus and other autoimmune diseases. This risk is not a certainty, however, and access to medical care can help reduce these risks further.

What about Neonatal Lupus?

Children can develop lupus at a young age (childhood-onset lupus). The risk is higher in the children of mothers with SLE.

There is a rare condition called Neonatal Lupus. This is a lupus-like condition that results in skin rashes and other complications after birth. It is caused by autoimmune activity, like lupus. And mothers with SLE have a higher risk of having children with this condition. Neonatal lupus generally clears up on its own, but can come with a serious condition called cardiac heart block.

Neonatal lupus has nothing to do with the cognitive development of children. But it is a potential complication of pregnancy during lupus.

With the appropriate services, both chronic illness and learning disabilities can be handled. Medical care can help with pregnancy complications. However, these are all things to keep in mind for women with lupus who are considering a family.

Many lupus treatment teams recommend family planning strategies to have some control over the situation.

So, What’s the Verdict on Cognitive Development and Lupus?

There are many things to consider about pregnancy for women with lupus, but it seems that a risk of long-term neurological damage or disability is not one of them.

In fact, the children of people with SLE are most often healthy – however, it is worth discussing with one’s partner and lupus treatment team, and making plans for a new arrival.

Muscular weakness, fatigue, stress, and doctors’ appointments can make work and school difficult for people with lupus. And we haven’t even mentioned brain fog which can add frustration and challenges.

Having trouble at work, even as far as not being able to work, is a not-uncommon issue that people with lupus face. Stories about these sorts of problems are common on lupus forums. However, many people with lupus do continue to work.

Work may be the main way that you have health insurance and it can help you afford the many clinic visits and lupus medications. So, how do you get through it? Because you can!

The key to staying employed is to learn your limits. You only have so much energy to spend and a lot of different priorities to spend it on. Fortunately, there is help:

If you can, communicate with your supervisors, your HR department, or your boss about your difficulties. It can potentially open the door for accommodations. But, be sure to know your rights.

Potential Accommodations You Can Get for Lupus

First, you are not legally required to tell your employer that you have lupus. However, the Americans with Disabilities Act (ADA) only protects you if the employer has been made aware of the disability. For this reason, it can be valuable to disclose your lupus diagnosis with your employer. You may want to wait and see how supportive your employer will be. But when you do disclose your lupus, at the very least, they cannot claim that they did not know. 

You have the right under the Americans with Disabilities Act (ADA) to ask your employer for “reasonable accommodations”. Accommodations can include:

• Extra breaks
• Closer parking spots
• Telecommuting options
• A shifted work schedule
• Specially-designed, ergonomic desks that support the joints
• A desk away from a sunny window
• Different types of lights in the building

These accommodations are designed to ensure that you can still do your job! You cannot be fired for requesting accommodations or for having an illness. (Plus, providing an already trained employee support to do their job is more cost effective than firing them.)

 

So, what is a “reasonable accommodation?”

Unfortunately, this is up for interpretation. However, the law says this: They “must enable a disabled employee to perform his or her job (modifications to work stations, assistive equipment, flexible work schedules, changes in job location, etc.)” A note from a doctor can help nudge your workplace in one direction or another.

Lupus can make it hard to enjoy working. But accommodations can help restore balance.

What can you can do to maximize your effectiveness at work.

• Use Accommodations.
  • There is no shame in getting a little support, as appropriate to your needs and your job. In fact, you should go for it! Flexible schedules, remote working, note takers, special tools or protective equipment, dictation software, and screen readers are only some of the possible accommodations that could be useful for people with lupus.
• Use Reminders and Apps.
  • Aside from the accommodations that your workplace provides, using sticky notes, organization apps, scheduling systems, and checklists can help make your work manageable.
• Take Care of Yourself.
  • Eat properly. Try to consistently get a good night’s sleep. Stay up to date on your immunizations. Keeping yourself in good health through simple lifestyle choices helps your lupus symptoms and makes you better able to keep up with the stresses of work.
• Take your Medications.
  • Lupus medications can have side effects, but you need to keep them up and make your doctors’ appointments. This will keep you as healthy as possible and allow you to manage your symptoms better.
• Reduce your Workload.
  • This one can be tough. Try to know your limits and, if necessary, work with your employer to create a conquerable work plan. Reducing your workload and stress-load is key. Life is a long journey — doubling down today can lead to consequences tomorrow.
• De-stress Yourself.
  • There are many stress-relieving strategies, including art, music, mindfulness and hobbies. Relieving your stress makes you better able to handle your life. Which could help you keep up with the demands of your job.

What if I Can’t Work?

Taking care of yourself with lupus can be a full-time job in and of itself! Focus on your treatment, on reducing your flares, and on understanding your triggers. Additionally, current times are certainly impacting job security and availability, whether you have lupus or not.  

For people who are unable to work due to lupus, disability benefits can offer a financial safety net. Benefits are a stipend of money intended to pay for basic food and shelter and take some of the pressure off of people fighting their chronic illness. It isn’t much, but it can make a big difference. Read more here about what pursuing disability benefits is like, and how you can do it.

One of the best things that you can do for yourself, however, is to forgive yourself. You can’t control all of your lupus symptoms, and you can’t always control your energy levels. But, you can always try to do your best.

Has science found a link between the winter and lupus symptoms?

TL;DR: No

Few scientific studies measured the effects of cold temperatures on lupus symptoms. One of the better studies examined was published in the International Journal of Chronic Diseases in 2014 by Squance, M.L., et al. It didn’t find scientific proof of a connection but believes more studies are required.

“more directed studies are required to investigate and establish lupus flare and temperature change associations.”

Really? What about a scientific link between winter and rheumatoid arthritis?

TL;DR: Sort-of

You might have heard the classic truism: “Cold and wet is bad, warm and dry is good for RA.”

While there is scientific proof humidity has an impact on the symptoms of RA, scientists haven’t found a clear link between symptoms of rheumatoid arthritis and cold temperatures.

Oral health: lesions & lupus

Dr. Paul Friedman, an expert on diseases that impact the mouth, presented on oral lesions and lupus at the Hospital for Special Surgery. He noted that 40% of oral lesions in people with active lupus are caused by other factors such as medications. But, the only way to truly identify the cause of a lesion is to perform a biopsy.

However, some oral lesions associated with lupus do have a distinctive look. Lupus oral lesions are, “usually red ulcers surrounded by a white halo [with] white, radiating lines.” The lesions can be painful and typically occur in three locations:

• Inside the cheeks
• On the roof of your mouth (the hard palate)
• On the lower lip

 

NOTE: Inform your doctor as soon as you notice a lesion that fits the description above

Dr. Friedman says it is essential that a dentist provides an oral soft tissue exam regularly. This type of exam takes only a couple of minutes and can be conducted during a routine cleaning.

 

The Lupus Foundation of America shared the story of Laurah Rodgers’ path to a lupus diagnosis. Laurah had a history of undiagnosed health problems when she arrived at the dentist for a possible cavity. Laurah had upwards of 100 oral ulcers. The dentists began the diagnostic process, referring Laurah to an oral pathologist (to rule out cancer) then to a rheumatologist who confirmed that Laurah had lupus.

Oral health & lupus medications 

Oral lesions will be impacted by the medications you take to combat lupus. Still, in some instances, antimalarial drugs may be used to treat lesions. These medications may cause a change in the pigment of the lining of the mouth and palate.

 

The most common drugs known to cause oral reactions are:

• NSAIDS
• COX-2 inhibitors
• Antimalarial drugs
• Calcium channel blockers
• ACE inhibitors
• Cholesterol lowering drugs
• Rituximab
• cyclosporin

 

As with any medication, there are always risks of serious and non-serious side effects. Be sure to discuss potential side effects with your doctor before starting any new medications.

Erythema multiforme (commonly known as Stevens-Johnson Syndrome) is a serious drug reaction that can develop overnight. A full-blown version of the reaction can be life-threatening. If you experience the following symptoms, contact your doctor immediately or go to the emergency room:

• crusting of the lips (typically symmetrical)
• painful ulcerations on the gums, lips, cheeks, tongue, and/or cheeks
• swollen glands
• fever
• genital lesions may occur

Sjogren’s Syndrome (SS) and oral health

Sjogren’s Syndrome (SS) is a different autoimmune disease that occurs in about 20-30% of people with lupus. Like lupus, it is a difficult-to-diagnose disease that may often go undiagnosed for years.

Sjogren’s Syndrome targets the salivary glands in the mouth and the lacrimal glands in the eyes causing sicca complex (dry mouth and dry eyes). While the destruction of the salivary glands is painless in up to 50% of people with SS, the decreased saliva is a detriment to oral health. People with SS are more likely to develop oral fungal infections and cavities.

 

Additional information on Sjogren’s Syndrome is available here.

 

Oral health recap

Lupus, and associated diseases like Sjogren’s Syndrome, negatively impact oral health which can have negative impacts on quality of life. It is important to consider your dentist as a part of your lupus treatment team so that they can be aware of potential irregularities.

 

Not all insurance plans cover dental. But, here are some strategies from Health & Human Services for finding affordable dental care.