If you’ve been recently diagnosed with Systemic Lupus Erythematosus (SLE), the most common form of lupus, you probably have a lot of questions. One of the most common questions I hear from women about lupus is how do hormones impact the disease?

The answer to this question is vitally important for women, particularly when we’re talking about birth control and hormone replacement therapy (HRT). Without a solid understanding of how hormones influence SLE, you might think you’re simply preventing pregnancy or addressing symptoms of menopause, but actually be causing your disease to flare up.

That’s because all hormones are chemical messengers, but the messages they relay can become garbled when other conditions are present. And because research has shown that sex hormones, in particular, have a great influence on SLE, if you are taking these hormones as birth control or HRT, you may be sending the wrong messages to all of your body systems.

Let’s take a look at what lupus is, how hormones impact the disease, and what options exist to support hormonal health AND minimize lupus flare-ups.

What is Lupus?

There are many forms of Lupus, and symptoms can range from mild to very severe. SLE, as I said, is the most common form. Most commonly, women in their childbearing years are impacted by SLE, with flares often occuring during pregnancy and in the post-partum period.

Lupus treatment varies, and is based on each individual’s needs and symptoms. One of the most common symptoms of lupus is a distinct rash on the face, often called a “butterfly rash” which spreads over both cheeks and across the nose.

Depending on which type of lupus you have, symptoms can range from the rash alone to much more severe problems, including inflammation throughout your body systems that can damage major organs, especially the kidneys or lungs. In recent years, the frequency of the milder stages of lupus has increased significantly, but later stages have actually decreased. While symptoms can be uncomfortable, they are often quite manageable for many lupus patients.

Women make up between 80-90 % of lupus cases in the US, lending the theory about a hormonal connection much credence. Some ethnicities are more prone to lupus as well. There is no clear answer as to what causes lupus, but environmental factors and genetics are certainly a part of it, as with most autoimmune disorders.

Diagnosis of lupus is difficult since symptoms present in many different ways. Unfortunately, many women in the mild stages aren’t taken seriously by their health care practitioners. The disease has to progress to a more severe state before a diagnosis is given. To receive an official diagnosis of lupus, you typically must have four of eleven specific criteria.

While there are several blood tests that can help diagnose lupus, these often come back normal. That doesn’t mean you definitely don’t have lupus. And these tests are an important place to begin. They can rule out other issues, and give your healthcare professional a clear picture of where you stand at that moment.

How Do Hormones Impact Lupus?

Getting a diagnosis can help you manage your symptoms, especially when you understand the connection between sex hormones and lupus.

Hormones carry specific signals throughout the bloodstream. But at any point in the process, these hormones can be disrupted, changing that signal between the brain and the target cells. That means that specific hormones are unable to do the work they were intended to do. This is of particular importance for women with an SLE diagnosis if they are either trying to prevent pregnancy or manage symptoms of menopause. Contraceptives with high concentrations of hormones and/or hormone replacement therapy may not be the best solution for some of these women.

The connection between estrogen and lupus

Women are much likelier to develop lupus than men, in large part due to estrogen. Although estrogen is known to play an important role in the development of lupus, its specific relationship to autoimmune diseases is not clear. Progress is being made, but the connection between lupus and estrogen is highly controversial.

What we do know is that when it comes to the relationship between the immune system and estrogen, healthy functioning requires just the right amount – not too much estrogen, and not too little. The ratios of particular types of estrogen also play into healthy immune functioning.

Because of the hormonal link to flare-ups of the disease, clinicians caring for women with SLE often face difficult decisions regarding the use of birth control and HRT. Although it is now generally considered safe, when referring to studies, the evidence can seem a bit murky unless the patient has a specific contra-indication to exogenous (coming from outside the body) hormones related to specific medical conditions.

Oral contraceptives and HRT

When it comes to oral contraceptives containing estrogen, the concern is two-fold: lupus flare ups and risk of blood clots (thrombosis). Thrombosis risk may already be elevated in certain instances for women with lupus, making estrogen-containing contraception an inappropriate choice.

The Safety of Estrogens in Lupus Erythematosus National Assessment (SELENA) studies, focused on use of oral contraceptives and postmenopausal hormone replacement therapy in women with lupus. The researchers’ goal was to determine if these exogenous female hormones triggered disease activity.

These studies revealed that estrogens heightens autoimmunity while androgens and progestins suppress the immune response. Patients with lupus have been shown to have smaller concentrations of androgens in their body fluids and a decreased ratio of androgens to estrogens. SLE patients have also shown a quicker conversion of androgens to estrogens, and higher estrogen concentrations in their joint fluids. This is all information worth considering.

The good news is, while these studies detected a slight elevation in disease symptoms, they also indicated that women with SLE can tolerate low-dose exogenous hormones with a relatively small risk of mild flare ups. In other words, taking certain hormones can be considered safe for women with lupus, when all the factors – including medical history, autoantibody test results, severity of the disease, and history or risk of blood clots -are taken into consideration.

Progesterone-only alternatives, including the progesterone pill, injection, and IUD, are not associated with an increased risk of blood clots. However, there may be other considerations, such as breakthrough bleeding and failure rate, that factor into the decision.

Oral contraceptives may also slightly increase the risk of developing lupus for some women. Data collected in 2009 analyzed 1.7 million women ages 18 to 45, and found a small subgroup of women with a genetic predisposition to lupus, who – when taking birth control pills containing both synthetic estrogens and a progestin — may be more susceptible to the disease. The overall risk is still small, but taking birth control pills with a family or personal history of lupus should be considered before use.

There are, of course, a number of other options for contraception. Women with lupus should always talk through all the options with their health care provider to find the best fit for their individual situation.

Hormone replacement therapy and lupus

Hormone replacement therapy is slowly becoming less standard for post menopausal women, due to the potential for higher risk of heart disease, thrombosis, and breast cancer. But it’s still recommended often enough that women with SLE must be aware of the potential risks. With SLE, the risk of cardiovascular trouble or blood clots is already elevated, which is why it’s so important to be aware of the concerns.

There are three major concerns around HRT and SLE. The concerns around HRT are similar to those around oral contraceptives. First, although studies have shown no increased risk of major flare ups due to estrogen therapy in menopausal women with lupus, the synthetic hormone replacement therapy used in these studies did slightly increase the risk of mild to moderate flare-ups. In fact, women with lupus were 20% more likely to exhibit symptoms from their lupus, though they didn’t require hospitalization or high doses of steroids to treat these symptoms. But not needing intensive treatment doesn’t make managing the symptoms any less frustrating, especially if the flare can be avoided.

The second consideration is the risk of premature ovarian failure (POF) in women with SLE who experience severe menopausal symptoms and take cyclophosphamide, a medication that alleviates inflammatory damage. While some clinicians may decide that the benefits to managing severe menopause symptoms in women with lupus outweigh the increased risk, I don’t necessarily agree. In my experience, there are a number of natural alternatives that can provide relief without the potentially serious complications.

Finally, as I said before, women with lupus are already at increased risk of blood clots and heart disease. Conventional hormone replacement therapy is also connected to an increased risk of these conditions, even in healthy women.

These considerations are why it’s crucial for women to discuss all the options with their health care provider to make a cautious, informed decision. Women with stable, inactive SLE, and relatively low autoimmune factors should only consider low-dose, short-term HRT. And women with a history of blood clots, heart disease or other risk factors should seek alternative solutions.

Quality of life

A diagnosis of lupus is just one factor in a woman’s life. If quality of life is poor, or long-term health becomes an issue, the benefits of hormone replacement therapy may well outweigh the risks.

With over three decades of experience as an OB/GYN Nurse Practitioner, I listen intently to what a woman is telling me about her life and her needs. In doing so, I am able to carefully weigh the options for SLE patients with both a person-centered and a disease-oriented focus.

If a woman wants to try a course of HRT, I recommend that we first complete a comprehensive hormone panel, to gauge the levels of all her sex hormones and their various metabolites in her body. With the results of that testing, I can then consider various types of bioidentical HRT, along with supplements that abate inflammation and facilitate estrogen metabolization.

While hormone therapy with bioidentical, natural estrogens and progesterone has not yet been studied in women with lupus, I firmly believe that the more natural a hormone is, the better able a woman’s body will handle it.

I closely follow all of my patients, to be sure the approach we have chosen is working as intended. Together, we track changes in her symptoms and check-in on her overall well-being. I periodically retest her hormone levels, adjusting her dosage to the lowest effective amount of these bioidentical hormones, for the shortest period of time needed.

Supporting hormonal balance while living with lupus

There are multiple factors – many that you have no control over – that can cause your hormones to become imbalanced. These include genetic variations, exposure to toxins in your environment, poor nutrition, lifestyle stressors, and prescription drugs, including those with synthetic hormones.

Despite the fact that you can’t control your genetics, and may have little control over what’s in your environment, there are many elements that your choices will impact a great deal. Even if you are diagnosed with lupus, these choices can support your internal hormonal balance.

For instance, you can reduce inflammation by eating an anti-inflammatory diet, and pay close attention to nurturing your emotional well-being, thereby reducing stress. You can make well-informed decisions about the medications you take. You can prioritize sleep, regular physical activity, and self-care.

Exploring natural alternatives is always my first choice for patients when talking about hormonal balance, whether they have a chronic disease or not. The choices you make every day matter.

A diagnosis of lupus doesn’t mean your life is over. Managing chronic disease isn’t easy, but it’s my goal to help women take control over as many aspects of their lives as they can, to live the happiest, healthiest life possible!