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.

One example of the important role hormones play in the body’s regulation is insulin. Insulin allows cells to absorb glucose and helps the body regulate blood sugar levels. When the body does not respond properly to it, it can result in diabetes.

Interestingly, there are also naturally occurring steroids in the body that are also a type of hormone. Based on the body’s receptors, they have been classified into five groups: glucocorticoids, mineralocorticoids, androgens, oestrogens, and progestogens. In the form of corticosteroids, are a major part of lupus treatment, and you can read more about it here.

Hormone Levels and Roles

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.

It is well-documented that sex-related hormones are related to systemic lupus erythematosus (SLE). 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.

That said, hormones are not the only factor in SLE. The effects of hormones on the body are too complicated for treating immune system dysfunction with hormone therapy to be considered at this time. Genetics, and sex differences in chromosome expression, is thought to play a greater role than hormone levels in most cases of SLE. 

What is the Relationship Between Hormones and Lupus?

One potential explanation for sex differences and SLE is the varying levels of sex hormones in the body. In particular, the ratio of particular hormones to one another may affect how immune cells develop and mature. And, which immune cells the body gets rid of.

B cells are a class of immune system cell that targets and marks cells for destruction. This happens at “checkpoints” in the body, including before cells are released. This process ensures the eradication of intruders like bacteria and virus-infected cells.

Estrogen and prolactin (sex hormones associated with female reproduction and development) are also involved in protecting B cells from destruction. Higher levels of these hormones can allow more B cells to circulate in the body. Next, the increased level of B cells can lead to an immune response, and may trigger symptoms of lupus.

Estrogen Treatments

Estrogen is known to activate or encourage the activity of T cells. These cells seek out and destroy pathogens that use the body’s own cells to multiply, such as viruses, some bacteria, and tumors. T cells are a major component of lupus-related damage and symptoms, and you can read more about them, here.

When mice were treated with an estrogen antagonist (a type of medication which prevents estrogen from binding to receptors on cells) they had decreased rates of disease and milder symptoms.

One potential explanation for the reason women (females) develop SLE more frequently than men (males) is because they have more estrogen. This can be linked to two causes: 1) higher production levels of estrogen; and 2) higher levels of the natural conversion process of testosterone to estrogen (known as aromatase).

Before converting to estrogen, testosterone first becomes estradiol. A 2003 review on hormones in SLE noted estradiol levels are higher in people with SLE. This difference in estradiol levels was not found in males, though it should be noted that there are not as many large studies on SLE in men. This implies that there is a higher-than-normal conversion of testosterone to estrogen. Plus, it might amplify estrogen’s effect in the body further.

 

Testosterone Treatments

Testosterone, a male sex hormone, is known to suppress the immune system. Conversely, estrogen and other hormones in the same family push the immune system to produce and react to antibodies, leading to immune responses.

People with lupus may be more sensitive to the estrogen in their bodies due to genetics. This allows it to trigger responses more easily, and potentially allows it to accidentally target the body’s own cells. This is supported by the finding that, if a woman’s ovaries are working sub-optimally and producing low levels of estrogen, she also has a lowered risk of lupus.

Conversely, oral contraceptives, estrogen treatments, and ovulation induction as a part of fertility treatments have been known to trigger flares. When testosterone is administered, it is linked to reduced lupus symptoms.

However, estrogen also influences the development of T-cells in the organ called the thymus. The hormone is involved in activating CD3-T cells and producing cytokines. Notably, estrogen treatment can lower thymus activity, but low levels of estrogen can also lower thymus activity. This implies that normal estrogen activity is needed to keep the thymus and the immune system working at a healthy level. It is also necessary for the destruction and survival of cancer cells, a vital function of the immune system, as well.

A few years ago, Christine Miserandino wrote a post on the blog “But you Don’t Look Sick” called “The Spoon Theory”. Using spoons from a diner, she explained to a close friend what it’s like to have lupus or other chronic illnesses. You can read the post for yourself here.

Let’s dive into the key takeaways of the spoon theory of energy management:

• You start out with only so many “spoons” per day, and have to manage them carefully.
• It’s the little things that cost spoons, like standing up, reaching, picking out clothes, and so on that really drain the day. Many people, even people who understand the idea of limited energy, don’t realize that these little things cost spoons at all.
• Some activities and sub-activities cost a good amount of spoons, but are so necessary that people with lupus have to do them anyway and base other activities around them.
• Using more spoons than what you have means that you are borrowing against your spoons the next day and your health.

Note: If the terminology of “spoon”s is throwing you off, try thinking of them as “energy points” or something similar. Coins, puzzle pieces, or pieces from a sheet of paper may work too — whatever works for you and your friends.

Tips for Managing Energy

#Lupuswarriors are in the trenches every day, trying to manage their energy and take care of yourself and others. You have to be both warriors, fighting through the day, and generals, planning the whole campaign along with your lupus treatment team. It’s not easy, but you can do it – you do it every day.

A lot of how you manage lupus and your energy levels is unique to you, and each #Lupuswarrior has their own battle strategies.  There are a few basic things that you can do, however, to help maximize your spoons.

Take Medications as Prescribed

Lupus medications come with a variety of unpleasant side effects and can seem like they aren’t worth the hassle. Some of these side effects can even cost you spoons. However, the prescriptions that make up a lupus treatment plan can be crucial to decrease organ involvement and maintain long-term health. Not taking medications will lead to less spoons in the future, which means fewer spoons to use on things that you need to do, and more flare ups.

Don’t Skip Meals

Your body needs energy, and many lupus medications need to be taken with food. However, nausea, pain, fatigue, and the gastointestinal problems that can come with lupus may get in the way of your daily meals. You may be tempted to skip a meal, but you shouldn’t – you will be paying for it later. Keep simple foods on hand like soups and small snacks, and try to keep some energy available to eat. 

Take Vitamins and Minerals

Eating is important, but just as important is making sure that you eat right. Giving your body all the nutrition it needs (and avoiding foods such as garlic that can lead to flares) is important to maximizing your health and energy. However, #Lupuswarriors can find it difficult to eat a full set of nutritionally balanced meals. Taking multivitamins, calcium tablets, and vitamin D supplements can ensure that you get what you need even when you don’t have the spoons for eating more than the basics.

Don’t Overdo It

When you’re having a good day, it’s tempting to try and take on the world. Symptoms come and go, or medications take effect. Or, you find a great new strategy that makes you feel like you can finally do all of the things on your to-do list. Remember to take things one step at a time. It’s not easy to hold yourself back, but if you do too much at once, you could set yourself back. Be patient, take breaks, and go easy on yourself – you’ll get to where you want to go if you pace yourself.

Plan Ahead

#Lupuswarriors are also generals. Plan out your day as if you were fighting a war – what do you have to do that day? What do you want to do today? How are you feeling? What’s the weather like? How much do you think you can do today? When can you take breaks? Which tasks truly must be accomplished, and what can wait until tomorrow? The answer to each of these questions will be different for each person with lupus day-to-day, and how you plan this out may take on different forms. Try a flowchart or a scheduler for easy guidance, and keep an eye on your condition throughout the day to change the plan as needed.

Let Other People Help

Delegation is an important part of any #Lupuswarriors arsenal. Learning to ask for help is an important part of your care journey. If you need something to get done, but you don’t have the energy to do it in whole, do what you can and have someone else do part of it for you. Or all of it. The key to getting support is asking.

Taking Care of You

Most of all, though, have reasonable expectations for yourself, get through your day, and do what you need to do.

Reading blogs and posts by other people with lupus and other chronic illnesses can help keep things in perspective and offers a morale boost.

The But You Don’t Look Sick blog has inspiring and insightful posts by guest posters with many different chronic diseases. “Spooniechat” is a twitter chat for people with chronic illnesses, and is a great place to share spoon-conserving advice.

If you want to learn more about fatigue and managing your energy with lupus, our article here discusses it in-depth.

Systemic lupus erythematosus, or SLE, is the most common type of lupus. SLE is usually what people mean when they just say “lupus”. It is an autoimmune disease that has a broad spectrum of intensity, ranging from mild symptoms, to serious organ issues. SLE has acute (short-term and intense) and chronic (long term and constant) symptoms.

Chances are, if you have SLE, you experience a variety of symptoms that fall under both categories. You can read more about SLE and its symptoms here.

 

A Strategic Approach to Lupus Management

The goal of clinical care is to identify the most appropriate treatment for a given patient. Researchers have developed a model which “posits that manifestations of SLE can be divided into 2 broad categories,” termed Type 1 and Type 2.

Lupus Type 1 SLE and lupus Type 2 are different subsets – types – of SLE  symptoms. It is possible for a person to experience both types. They are classified according to their symptom profiles, but also have biological differences. Your clinician can refine their treatment approach as particular medications lead to better results depending on type.

Type 1 causes the most tissue damage. It involves more immune system activity that actively attacks the internal organs. While Type 1 can quiet down and resemble remission, it can also flare up into painful, debilitating events.

Type 2 presents with less immune system activity and less organ damage. However, people with Type 2 SLE experience high levels of pain, fatigue, and more constant symptoms. Type 2 can come and go, and also have flares, but it usually ‘simmers’ at a lower intensity, but more constant state. These Type 2 concerns should be prioritized and treated by clinicians. Though, studies have shown that managing organ damage is often a rheumatologist’s primary concern.

Type 1 Lupus and Lupus Nephritis

Type 1 SLE is heavily associated with organ damage, and that includes the kidneys. The inflammation happens in the nephrons, the part of the kidney that is in contact with the bloodstream. The kidneys filter out waste products and keeping a good balance of salts and water in the blood. In SLE and lupus nephritis, the immune system misidentifies and attacks healthy tissues of the kidneys.

Lupus nephritis is distinct from SLE. However, the inflammation and subsequent organ damage caused by SLE leads to lupus nephritis. Although Type 2 SLE can lead to a lot of generalized inflammation in the body that could trigger lupus nephritis, this direct damage to the kidneys by Type 1 SLE appears to be a more frequent trigger.

Different Antibodies, Different Symptoms

One of the primary differences between the two types of lupus is the presence of a specific type of antinuclear antibody. Antinuclear antibodies (“ANA”)mark proteins found inside a cell’s nucleus (the “control center” of the cell). This sends the immune system to attack otherwise healthy cells. Normally, antibodies tag harmful pathogens, such as bacteria and viruses. But in autoimmune conditions such as lupus, ANAs set the body against itself. These types of antibodies are detected by a series of tests called ANA tests, which you can read more about here.

The special ANA that differentiates Type 1 and Type 2 lupus is Anti-dsDNA. Anti-dsDNA tags and attacks DNA strands. It is found in about 30% of people with SLE.

When it attaches to DNA, it may begin or contribute to chronic inflammation, and increased levels of anti-dsDNA may herald a return of disease. Several tests, including the enzyme-linked immunosorbent assay (ELISA), the Crithidia luciliae immunofluorescence test, and radioimmunoassay tests, can detect it.

 

Anti-dsDNA Antibodies

These anti-dsDNA antibodies are a major factor in organ damage (particularly of the kidneys) and  serositis. Researchers often find them in structures associated with (and inside) the kidney. This makes it very likely that they are the antibodies responsible for causing the damage. Add this to the fact that 2-30% of patients with SLE test negative for these antibodies, and there is a very compelling case for anti-dsDNA antibodies being involved in Type 1 SLE, but not necessarily Type 2.

 

Anti-RNP Antibodies

In comparison, anti-RNP antibodies are ANAs that react to RNA. RNA acts as a messenger, carrying the instructions for protein synthesis. Anti-RNP antibodies are generally associated with skin manifestations, as in cutaneous lupus, though whether they are associated with chronic disease is less known. However, the fact that there appear to be two different antibody profiles – the antibodies that are in play in each case – make it very likely that anti-RNPs may be a part of Type 2 SLE.

However, Anti-dsDNA antibodies frequently respond to immunosuppressant drugs, which shut down the immune system to prevent severe symptoms.

Strategically Treating Symptoms

Lupus Type 1

The etiology of lupus Type 1 is autoimmunity (inflammations-based which can lead to organ damage). Immunosuppressants and corticosteroids treat the biological factors related to Type 1.

These biological factors result in symptoms like:

• nephritis
• malar rash
• inflammatory arthritis
• mouth sores
• pleuritic chest pain
• cutaneous rashes
• serositis
• alopecia
• ILD (shrinking lung)
• vasculitis

 

Lupus Type 2

The etiology for Type 2 is noninflammatory. As such, these symptoms will not respond to standard immunosuppression.

Type 2 lupus patients are more likely to be prescribed analgesics (for pain), antidepressants, and lifestyle strategies (including sleep hygiene and exercise) to battle symptoms.

 Common Type 2 symptoms include:

• depression
• fatigue
• memory loss
• anxiety
• sleep disturbances
• brain fog
• cognitive disfunction
• pain

 

A Lupus Warrior’s Takeaway

Aside from differences in treatment options, what does it matter what type you have? Understanding the type of SLE you have can help predict what issues you are more likely to face in the future:

• People with Type 1 SLE will have to be on the lookout for signs of organ failure. Proactive monitoring helps protect the kidneys. Catching organ damage early is essential for limiting overall damage. It also underscores the importance of certain medication options.
• People with Type 2 SLE benefit from knowing that the symptoms are going to be more continuous. These symptoms, especially fatigue and pain, are both difficult to explain and severely impact day-to-day life. Many people write these symptoms off or try to “power through”. But, a lupus diagnosis can be a helpful step towards active strategies to reduce symptoms and chronic inflammation. You will also be more aware of new symptoms manifesting for different periods of time. And, will be better able to track them, figure out flare triggers, and report them to your lupus treatment team.

Money as a measure of lupus awareness

One effective measure of celebrity influence on diseases is to look at the amount of money contributed to causes or associations/alliances that benefit the cause. This measure of increased lupus awareness may even show an increased understanding of the importance of research, activity, and participation .

The President and CEO of the Lupus Research Alliance, Kenneth Farber, spoke with E! News and shared that as a result of a couple of public statements, that Selena Gomez contributed to raising over $500,000 for research funded by the alliance. This is truly an amazing bump in lupus awareness and activism by her fanbase.

However, money is not the only measure of increased lupus awareness.

Measuring Google search data

Google Trends is a tool created by Google to provide insight into how popular certain searches are over time. Search terms are measure relative to one another — as opposed to displaying the actual number of searches. Numbers represent search interest relative to the highest point on the chart for the given region and time. A value of 100 is the peak popularity for the term.

In the chart below, a number of terms are being compared.

• Autoimmune disease terms
  • lupus
  • systemic lupus erythematosus
• Selena Gomez
  • selena gomez (this is a Google search term)
  • Selana Gomez (denoted by Google as: American singer)

As you can see in the chart below, even compared to one another, there were large spikes in the amount of searches for both Selena Gomez & lupus.

Also, let’s look at the amount of traffic that Selena Gomez’s post was able to bring to the Lupus Research Alliance. From her post above, you can see that she provided the URL for the website and the name. However, it is a relatively safe assumption to believe that many people went on to Google the name of the alliance.

For comparison, the chart below looks at the differences in searches for the Lupus Research Alliance and the Lupus Foundation of America.

As you can see, Selena contributed to a giant bump in searches for the Lupus Research Alliance. However, this boost is not evident when compared to more popularly searched terms, including Selena Gomez. This suggests that this bump is quite significant, but that Selena’s search popularity is so significant that it can dwarf these search changes.

Measuring lupus awareness beyond search

So, what do people do after they search for additional information about lupus? Are people learning more about the autoimmune disease?

One way we can measure this is by looking at the public page view analysis on Wikipedia. Wikipedia is a common top search result – so spikes in traffic would suggest that people are using it to learn more about lupus.

In the 4 months prior to Selena’s announcement, the average daily traffic (in page views) was: 5,216. On the day of Selena’s post, the page saw 50,819 page views — nearly 10x as many!

In the days following Selena’s Instagram post, the traffic was higher than average, as you can see in the chart below. But, that bump does not seem to be sustained.

Wikipedia Page Views for Systemic Lupus Erythematosus

Celebrity power

From the data, it seems like Selena has had a huge role in advancing lupus awareness. But, it’s important for celebrities to understand the power of their reach. Selena Gomez shared information for a respected research group. In other instances, endorsements of specific medical products have caused issues.

When Kim Kardashian posted about a morning sickness drug, it was ‘liked’ more than 450,000 times by her 42 million followers. While the drug company enjoyed the unexpected press, the Food and Drug Administration (FDA) didn’t.

An FDA regulation prohibits promoting a drug without mentioning the risks of the medication. This applies to tv ads, print ads, and social media. Kardashian received a warning letter from the FDA and removed the post. This shows the power of celebrity and, to be fair, an understanding by the FDA that ad-hoc endorsements by high profile figures effectively function as ads.

 

Hopes for the future

Best wishes to Selena Gomez and all Lupus Warriors. Efforts like this are beneficial as they result in both money being directed towards research efforts and they increase the level of understanding about lupus.

As understanding about lupus spreads, it will provide other people with knowledge about the disease — and that may help all people battling “invisible illnesses.”