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Because changing hormone levels effect the immune system in a big way, menstruation cycles, also known as periods, can seriously effect lupus symptoms.

Systemic Lupus erythematosus (SLE) is an autoimmune disease that disproportionately affects women. In fact, 78% of people with autoimmune disease are female, which includes lupus.  You can read more about women and lupus here. The reason for this massive disparity is a combination of genetics, societal stress, and hormones.

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Hormones and Lupus

Hormones are signaling chemicals that the body uses as messengers to control and regulate cells throughout the body. The hormones that are the most important to lupus regulate the immune system (among other things.) First, glucorticoids are steroid hormones that are often the class of hormone used as medications for lupus, taking advantage of the body’s natural regulation system in the form of corticosteroids. You can read more about the immune system, here.

The hormones calcineurin, testosterone, estradiol, estrogen, and progesterone are particularly important to how the immune system regulates itself.  Estrogen is known to increase the activity of the immune system (especially T Cells) and testosterone is known to suppress the function of the immune system. Women have higher levels of these hormones, so if they also happen to get a glitchy gene that makes them more sensitive to these hormones, they are much more vulnerable to developing autoimmune diseases like lupus. People with SLE also have unusually high prolactin and estrogen levels, and lower levels of testosterone. This hormone-driven, more aggressive immune system could be a reason why women are more likely to develop autoimmune disease. 

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What is Menstruation?

Since lupus appears to be tied to hormone levels and is more prevalent in women, it stands to reason that menstruation, or “periods,” would influence lupus symptoms. In fact, many people with SLE, rheumatoid arthritis, and fibromyalgia experience flares before or during their menstrual cycle.

Menstruation is the scientific term for the normal monthly shedding of the uterus (womb) lining. This cycle is halted during pregnancy and generally ends completely in late middle- to old-age. Typically, menstruation occurs during a woman’s (or person with functioning ovaries and uterus’,) “reproductive” years, beginning as a part of puberty (around ages 11-14) and ending at menopause (around ages 51-60.) This shedding takes the form of vaginal bleeding, which typically lasts for 3-5 days and as well as several other symptoms, including abdominal cramping, back pain, increased water intake, bloating due to fluid retention, soreness and temporary expansion of breasts, headaches, fatigue, and anemia. Sensitive emotional states are a well-known symptom of menstruation, and people may feel irritable, particularly sad, prone to sudden mood swings, and even depressed or anxious.

Everyone experiences menstruation in a unique way. For some people, the symptoms and timing of their periods are consistent once their period becomes regular in late adolescence. For others, periods can be irregular with an almost “grab bag” of random symptoms every month. Some people have mild symptoms, while others experience extremely debilitating cramps and fatigue, GI upsets (such as nausea, diarrhea,) and neurological symptoms such as sensory overstimulation and migraines. Menstrual symptoms can occur before the period, known as pre-menopausal syndrome, and might linger after the period.

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What Happens During Menstruation?

Estrogen and progesterone fluctuate throughout the menstruation cycle, also known as the ovulation cycle. Progesterone levels are low during ovulation, rises, and then drops off during menstruation, while estrogen rises, remains high, and drops off toward the beginning of the period. These fluctuations cause changes in the body that affect the symptoms of autoimmune disease, most frequently as a symptom flare just before the start of the period (during the pre-menopausal stage.) However, like menstruation itself, each person with lupus experiences the effects of this change differently.

Since estrogen also affects the immune system in many ways. Menstruation can cause flares or fluctuations in lupus symptoms over the course of the monthly cycle. There is also a loss of iron through the bleeding, increased thirst, fatigue, and stress, and mood swings. All of which can drastically affect people with lupus.

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Menstruation and Lupus Symptoms

Menstrual symptoms can be easily mistaken for lupus flares. However, beyond that, menstruation is linked to other lupus symptoms.

People with lupus often suffer from anemia, a lack of iron in the blood. This is due to several factors including the destruction of red blood cells by the immune system and certain medications. However, because lupus is most prevalent in women, menorrhagia – particularly heavy or unusual bleeding during menstruation  – is potentially also a cause of lupus-related anemia.

In a “female health questionnaire” study that surveyed 70 pre-menopausal women with SLE, 49% of these people (nearly half) reported experiencing menorrhagia, which is higher than the general population.

This was a small study, and it is unknown why people with lupus might have particularly heavy periods, but it does increase the risk for anemia.

Women with SLE often have irregular menstrual cycles, as well as unusual levels of a hormone called Anti-Müllerian hormone (AMH.) AMH acts as a health-indicator for the ovaries. Studies looking at this hormone imply that some of the menstruation and hormone-related issues that women with SLE face may originate there. In a small study looking at 36 female patients with SLE (ages 18-39 years,)  irregular cycles – menstrual cycles that are unpredictable and uneven – were also associated with worse lupus (measured by their SLEDAI scores.)

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Notably, another condition, autoimmune progesterone dermatitis is a periodic reaction to rising progesterone levels. The skin conditions include hives, dry or flaking skin lesions, and sores. The skin symptoms include itching and skin lesions that appear at the same point of a person’s monthly cycle, then die down.

Lupus also effects menstruation. Inflammation and stress – a known trigger of lupus – can cause ovulation problems, and some people with lupus might skip their periods during flares. Lupus medications can also change the menstrual cycle in many ways, as do birth control pills. Hormone therapy is a potential treatment for people with bad period-related flares. However, it is only effective on a person-by-person basis and carries many risks. Hormone therapy may not be right for most people with lupus.

Medications and Menstruation

Corticosteroids are a key medication for lupus, but it may make the body more sensitive to fluctuating hormone levels. Cyclophosphamide, a medication that can help control lupus, also has potential side effects for fertility and early menopause, where it may interfere with ovary function. You can read more about fertility and lupus here.

Changing medications might be away to control menstruation-based lupus flares, though all changes in medication should be run by a doctor first.

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Advice for People with Lupus on Getting Through Menstruation

Most women with lupus have developed their own strategies for getting through their periods and the resulting menstrual symptoms and flares that result. Just as each woman’s menstrual cycle is unique, so too are the methods for getting through it.

A few common methods of note are:

  • Heated pads or water bottles, which help relieve muscle aches and cramps.
  • Taking aspirin or other NSAID painkillers, which is very good for the headaches, cramps, and fever-like symptoms.
  • Supplementing the diet with iron (either via iron-rich foods or iron supplements) to combat anemia.
  • Taking a break and having a light or no- work day during the most intense part of the cycle.
  • Isolating themselves to ease the stress of being irritable until the emotional sensitivity passes.

It is generally recommended that people with lupus continue taking their lupus medications during their periods, drink plenty of water, and cut themselves some slack. It’s a rough time, and you are dealing with it the best that you can.

Comments (8)

8 thoughts on “Menstruation and Lupus

  1. I feel awful and so fatigued days before my period, due to my lupus condition I have to stay in bed for days really does take a toll on me mentally and emotionally.

  2. I was diagnosed with Lupus when I was around 18/19 and it has been an awful journey until now (current age: 37) to be honest. I’ve had endometriosis as well, and had to have a full hysterectomy at the age of 30. Since January of 2021, I’ve been experiencing so many new issues and I’ve documented all of them because at some point you 100% feel crazy or you feel like people around you start to think you’re making it up. Recently, I’ve had headaches, blurred vision, floaters, memory issues (almost feels like pregnancy brain), and movement issues. My Rheumatologist is the absolute best Dr, so I’m blessed by God for that! We are going to see a neurologist for brain swelling. The other bizarre issue I have is that my eyes either water or feel scratchy almost every morning and my veins swell up in my feet and hands so badly that they hurt. Another issue is the “knocking” or wave like spasms in my side (from rib cage to hip) on the left side that no one can explain. The One common thing we see in the blood is that my D-Dimer is 10x or 2x higher than it should be, but no blood clot is found. Which has been extremely frustrating. My white blood cells are below the range and they found WBC in my urine as well on 3/28 when I was in the hospital.

    I have sleep apnea and gastritis as well, so that hasn’t helped me in feeling well either!

  3. I was diagnosed with Lupus when I was around 18/19 and it has been an awful journey until now (current age: 37) to be honest. I’ve had endometriosis as well, and had to have a full hysterectomy at the age of 30. Since January of 2021, I’ve been experiencing so many new issues and I’ve documented all of them because at some point you 100% feel crazy or you feel like people around you start to think you’re making it up. Recently, I’ve had headaches, blurred vision, floaters, memory issues (almost feels like pregnancy brain), and movement issues. My Rheumatologist is the absolute best Dr, so I’m blessed by God for that! We are going to see a neurologist for brain swelling. The other bizarre issue I have is that my eyes either water or feel scratchy almost every morning and my veins swell up in my feet and hands so badly that they hurt. Another issue is the “knocking” or wave like spasms in my side (from rib cage to hip) on the left side that no one can explain. The One common thing we see in the blood is that my D-Dimer is 10x or 2x higher than it should be, but no blood clot is found. Which has been extremely frustrating. My white blood cells are below the range and they found WBC in my urine as well on 3/28 when I was in the hospital.

    I have sleep apnea and gastritis as well, so that hasn’t helped me in feeling well either!

  4. I was diagnosed with Lupus when I was around 18/19 and it has been an awful journey until now (current age: 37) to be honest. I’ve had endometriosis as well, and had to have a full hysterectomy at the age of 30. Since January of 2021, I’ve been experiencing so many new issues and I’ve documented all of them because at some point you 100% feel crazy or you feel like people around you start to think you’re making it up. Recently, I’ve had headaches, blurred vision, floaters, memory issues (almost feels like pregnancy brain), and movement issues. My Rheumatologist is the absolute best Dr, so I’m blessed by God for that! We are going to see a neurologist for brain swelling. The other bizarre issue I have is that my eyes either water or feel scratchy almost every morning and my veins swell up in my feet and hands so badly that they hurt. Another issue is the “knocking” or wave like spasms in my side (from rib cage to hip) on the left side that no one can explain. The One common thing we see in the blood is that my D-Dimer is 10x or 2x higher than it should be, but no blood clot is found. Which has been extremely frustrating. My white blood cells are below the range and they found WBC in my urine as well on 3/28 when I was in the hospital.

    I have sleep apnea and gastritis as well, so that hasn’t helped me in feeling well either!

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