Lupus Headaches: Causes, Types, and Treatments

Headaches are a common symptom of systemic lupus erythematosus (SLE). Previous studies have varied on their expected prevalence, but up to 78% of people with lupus experience headaches. These headaches can come in many forms, can be very frequent, and can be very painful.

Unfortunately, much remains unknown. It is unclear if headaches in lupus are actually different from headaches in otherwise healthy people, if they actually occur at higher frequencies in people with lupus, or if they require special treatment. Here’s what the LupusCorner community had to say:

SLE causes or leads to many conditions that are known to contribute to headaches. Many of these symptoms are common for Lupus Warriors.

While there are many different types of headaches, they are typically classified into a few basic types: Primary and Secondary.

Primary headaches are an overload or malfunction in the pain receptors in the head. Secondary headaches are similar, but the pain is a symptom of some other issue in the body. These two types can be further broken down into 4 main types.

Because they share similar causes, headaches, nausea, brain fog, and fatigue are often linked together, and people with lupus frequently have more than one ailment at a time. This also means that many headaches can be alleviated or prevented through proper hydration, a good night’s sleep, and stress-relief techniques. Headaches also generally go away with time, though pain-managing medications can help reduce the intensity of the pain enough to live with.

Physical Inactivity and Depression

Depression and problems with keeping up physical activity are issues that many people with lupus face. Unfortunately, many lupus symptoms can make both depression and inactivity worse!

Lupus Warriors often have light sensitivities, fatigue, and pain, which prevent them from being active. Depression and inactivity (also known as a sedentary lifestyle) do not occur in a vacuum. In fact, depression is well-known to affect physical activity. On days where it’s hard to get out of bed, working out is can be a tall order. But, being physically active can help battle symptoms of depression.

Depression is very common for people with lupus. Depending on the study and how they define depression, the rates of depression can range from 50% to 93%. When people with lupus have a low level of physical activity, they are three times more likely to report that they have depression down the line – even years later.

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And you can see the current list of quizzes and polls on LupusCorner Insights

LupusCorner butterfly rash poll methods

The poll was posted on LupusCorner and our Facebook page in 2016. There were 2 ways to answer the poll:

1. From the poll widget
   • Do you ever experience the butterfly rash (malar rash): Yes/No/I do not have lupus
2. In free-text responses in the Facebook comments
   • Any comments that could not be coded were removed from the sample

Poll results

There were 969 total responses. 53.4% of people with lupus experienced the butterfly rash at some point in their battle. Ten people did not have lupus and were removed from the calculation.

As a result of this poll, we have some knowledge of the self-report baselines for the LupusCorner community. While this is useful, it does not take additional lupus factors into consideration.

Butterfly rash & lupus: current context

The goal of the poll was to replicate current studies with patient-volunteered information. Because of this, some potentially relevant factors were not added the poll (or to existing research) including:

• disease severity
• racial/ethnic background
• age of lupus onset

There is some current research suggesting that the above factors may be relevant to the butterfly rash prevalence. For example, late-onset SLE (defined as onset of the disease after age 50) was more benign, with a significantly lower incidence of the malar rash according to one study conducted with a Chinese cohort of participants.

So, how does this poll compare to other prevalence statistics? Wikipedia reports that the butterfly rash is “present in approximately 46-65% of lupus sufferers and varies between populations.“

Butterfly rash prevalence in 2 distinct US Hispanic subpopulations

A study by Vilá, L. M., et al., examined two US Hispanic subgroups – focusing on 105 Hispanic SLE patients from Texas and 81 SLE patients from Puerto Rico. The average ages, in years, were 33.1 and 37.5 for the Texas population and Puerto Rican population respectively.

These two groups of participants has significant differences between them. The Texas cohort experienced the rash in 45.7% of participants while the Puerto Rican cohort experienced the rash in 65.4% of participants. Wikipedia uses these numbers to describe the butterfly rash prevalence.

While this finding is interesting, the researchers also found 7 other clinical differences were and 3 different autoantibody measures  between the groups. Additional research is necessary to better understand why these differences exist — with particular interest paid to nature/nurture differences and access to healthcare services.

Though not completed in the original study, we combined the population subgroups to find the total prevalence percentage, regardless of cohort. Interestingly, the prevalence was 54%, nearly identical to the finding of our poll

Malar rashes in Tunisian populations with lupus

This study by Houman, M H., et al., focused on a Tunisian population. The authors noted at the time of publication (2004) there were few studies on Arab populations and effectively 0 studies on North Africans/Tunisians.

First, the researchers retroactively enrolled 100 SLE Tunisian participants (92 women and 8 men) into the study. The average participant age was 32 years old. 19 of the patients were over 50 upon diagnosis, but age-of-onset figures do not appear in the results section for variability of butterfly rash.

This study found that 63 of the participants experienced the butterfly rash (63%). Also, Wikipedia cited this figure.

Cutaneous and non-cutaneous lupus symptoms

A study published in 1992 by Wysenbeek, A. J., et al., focused on all types of rashes. The study followed 81 patients with lupus at the Beilinson Medical Center in Israel. No additional information regarding the demographics of the participants was provided. Still, this study identified that 40 of the 81 (49%) people with lupus experienced a malar rash.

So there’s a consensus on prevalence of the butterfly rash? Not so fast.

While the top two studies are referenced by Wikipedia and the third is discoverable via a Google search, they are not exhaustive reviews of the research. The goal of these studies was not to determine the prevalence of the butterfly rash, though it was included in the analysis. Contradicting these findings, a larger study found a lower prevalence of the lupus symptom.

Cervera, R., et al. (2003) conducted a multi-center research study that lasted 10 years. 1,000 people participated from 7 European countries. “A total of 350 patients were from Spain, 250 from Italy, 248 from the United Kingdom, 50 from Poland, 50 from Turkey, 37 from Norway, and 15 from Belgium.” In addition to being comprised of varying ethnic and racial populations, these countries have varying cultures and availability of healthcare. These factors can change findings. So future studies should include these elements. Despite this consideration, the results presented are determined by combining all of these groups into a single cohort.

During the course of the 10-year study, 311 of the 1000 (31.1%) participants with lupus experienced the butterfly rash. Also, the study noted that the presence of malar rash, as well as other clinical manifestations like arthritis, was higher during the first 5 years of the study as compared to the second 5 years.

So the true prevalence of butterfly rashes in lupus is…

Rashes may appear in anywhere between 31% and 65%. But, there may be more to the question.

For this reason, future research should consider additional personal and disease-history factors to better identify potential causes or risk factors for the malar rash.

The butterfly rash is not sufficient for a rheumatologist to confirm a lupus diagnosis. So, if you believe you have lupus but do not experience the rash, continue tracking other symptoms.

Updated July 8, 2019

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.

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.”

Establishing a fatigue baseline

Previous studies have used the FSS in an attempt to better understand fatigue and lupus disease activity. The FSS is scored from 1 to 7; 1 is low fatigue and 7 is high fatigue. One of these studies published in 1999 found high rates of fatigue as compared to healthy subjects.

Average Lupus FSS Value: 6.08 (standard deviation: 2.7)

Healthy Participant FSS Value: 2.3 (standard deviation: 0.7)

It should be noted that this study had 81 participants. 76 of the 81 were women. 58 (72%) of the participants were white. As we did not gather any demographic information with our poll, we are not able to make any evaluations about the impact of sex and race on fatigue.

Lupus fatigue in the non-winter months

With an established comparison point, we looked at the data that was not recorded during the winter months (from December 1, 2016 to February 28). In total, there were 440 completed and valid FSS scores.

Lupus fatigue in the winter months

To compare to the data above, we looked at the FSS scores from all months not deemed to be the winter months above. Responses were available from November 2016, March 2017 – May 2017.

Lupus Quiz Total Results

Most respondents were able to correctly answer at least a couple of questions about lupus. Less than 1% of people couldn’t answer at least two questions correctly.

66% of people got either 3 or 4 questions correct. Let’s dive in and look at the individual questions, starting with the questions that caused the most trouble for our respondents.

How many doctors does it take to get a lupus diagnosis on average?

The most missed question on the quiz, getting a lupus diagnosis can be a difficult journey for many people. In fact, we have a whole article dedicated to the difficulties of getting a lupus diagnosis. It is not surprising that this question was answered incorrectly by more than half of people – it is both surprising and unfortunate that the diagnosis process is complex for so many individuals.

The correct answer, based on survey results, is: Over 4.

Only 48% (1,316 of 2768) people accurately selected that it requires seeing more than four doctors on average to receive a lupus diagnosis. 26% of responses thought it would take 3 or 4 doctors to diagnose.

What percentage of lupus sufferers are women?

Another question that was difficult for many people was the percentage of people with lupus that are female. The answer, explored in our lupus facts article, is that an astonishing 90% of people with lupus are female.

Only 49% of people got this answer correct. While this was the largest vote receiving answer, nearly 43% of people guessed that 70% of people impacted were women. This may reflect that people did not understand the degree to which lupus disproportionately impacts females.

Lupus affects all races/ethnicities equally – T/F?

With only 53% (1462 of 2768 respondents) of people getting this question correct, it seems that many people were simply guessing on this True or False question. The fact is, lupus disproportionately impacts people of color as compared to Caucasians. This includes African Americans, Hispanics/Latinos, Asians, Native Americans, Alaska Natives, Native Hawaiians, and other Pacific Islanders. For additional information on the impact of race and ethnicity, read the facts about lupus.

The other lupus quiz questions

Despite these difficult questions, there is still reason to be optimistic about people’s understanding and awareness of lupus!

98% of people knew that lupus is an autoimmune disease

And, 98% knew that there is no cure

These final two questions highlight that there is some understanding among respondents as to the nature of lupus. Many groups, including the Lupus Foundation of America, work to advance awareness and understanding of lupus. It is very possible that messaging about what lupus is, and the need to research potential cures, is successful.