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"Lupus Fog" – Changes in Memory and Thinking

Summary of a presentation to the SLE Workshop at Hospital for Special Surgery

Cognitive dysfunction, or what many refer to as “brain fog” or “lupus fog,” is often experienced by those who have lupus (also known as systemic lupus erythematosus or SLE). The symptoms of lupus fog take many forms. Therefore, it affects everyone differently. There is a history on how lupus fog has been defined and better understood over the years. Dr. Michael Lockshin, who presented this topic to the SLE Workshop, has played an important role in the research that has provided more clarity to the symptoms and severity of the condition.

Dr. Lockshin provided a wealth of information about lupus fog and invited the audience to ask questions. The presentation focused on three main areas:

  1. The progress regarding the ways that research has provided a better understanding of lupus fog’s causes, as well as its treatment options.
  2. The basis for what constitutes cognitive dysfunction.
  3. The risks for the average lupus patient, as well as research on new ways to test for lupus fog and manage its symptoms.

Identifying the Effects of SLE on Cognitive Function

In the 1960s, all of the brain symptoms associated with SLE were considered to be a single entity: Lupus fog was thought to affect everyone the same way. In the late 1970s, the clinical definitions for the ways that SLE affects brain functions were changed to be more specific. They also excluded the separate effects that high blood pressure and drug treatments can have on the brain. It was only in the late 1980s that a group of physicians, which included Dr. Lockshin, defined the criteria for the specific neurological effects of lupus, of which cognitive dysfunction (or lupus fog), was one of them.

The formal criteria were published in 1999. They allowed for more specific studies on lupus patients to identify how lupus fog affects daily life, and how it can be better managed.

What Is “Lupus Fog?”

It is important to note that lupus fog affects everyone differently. It can be confusing and frustrating, but you are not alone in the experience. Symptoms range in quantity and severity, and they can include:

  • Sleeplessness.
  • Rushed speech.
  • Difficulty navigating.
  • Trouble remembering small details.
  • Impairment of other brain functions that make daily tasks more difficult.

There are several neuropsychological tests to assess someone for symptoms of lupus fog. Many use questionnaires that focus on questions such as:

  • Do you remember important experiences in your past?
  • Do you remember to take your medications and remember details at home or work?
  • Can you concentrate on a task you need to do?

“These are the kinds of ways that neuropsychologists may start testing you for it,” Dr. Lockshin said. “But before you panic – all of these things are normal. And anybody who is tired or distracted will do all of these things. It is not alarming, it is not pathological, and it does not require treatment right away.” With most lupus patients, a key issue is to identify whether their “fog” occurs any more than in people who do not have lupus but do have fatigue.

There are also other kinds of neuropsychological tests. One test lists the names of several colors, but with each word displayed in a color that does not match the color named by the word (for example, the word “blue” written in red letters, as shown in the graphic below). The goal for the person taking the test to say out loud the color of the text, rather than the name of the color it spells. This exercise tests the brain’s flexibility in switching tasks.

Graphic of a color and word test used to test cognitive dysfunction.

What Is the Risk to You?

Lupus fog may cause difficulty in thinking in a variety of ways. A study published in December 2016, looked at the risk of brain-related effects in lupus patients. It included patients of all ages, even those older than 70. It also included patients who did not have lupus but had other conditions, such as diabetes, high blood pressure, heart disease, psychosis and/or strokes. The study showed that the relative risk of cognitive dysfunction to people with lupus was twice that of people without lupus. However, it is important to keep in mind that those in the study population included people with other medical conditions, and the elderly. While cognitive dysfunction may be more common in those with lupus, it is important note that only 3% of people with or without lupus are affected by cognitive dysfunction.

Dr. Lockshin said that the differences in cognitive dysfunction among those with lupus versus those without it are often due to several factors. For example, the stage of the disease, differences in the diagnoses made by physicians, and the differences among populations in a particular study can all influence the results (namely, the recorded changes in learning and memory).

One thing is clear in the recent research: When brain imaging is conducted on patients experiencing cognitive dysfunction, the visible abnormalities are found in the “efficiency” part of the brain. This means that the person with cognitive dysfunction does not really the experience reduced brain power but reduced brain processing efficiency. Dr. Lockshin described lupus fog as being more like “losing speed of thinking” rather than losing brain power.

In summary, Dr. Lockshin reminded everyone that while cognitive dysfunction does occur in many people with lupus, it is usually not severe. Most of the “fog” is associated with the effects of medication, and it usually does not progress to the level of severe forms of dementia or Alzheimer’s disease. As research continues, new technologies provide increased understanding of lupus fog and its possible causes. Ending the presentation on a positive note, Dr. Lockshin said that “in 2017, there is more hope than ever before that we will both understand cognitive dysfunction and have effective, safe treatment.”

Audience Questions and Answers

Dr. Lockshin provided the group with an opportunity to ask questions, some of which are shown below. Questions and answers were edited for clarity.

When you’re talking about brain fog, how long is it supposed to last? Is it a flare up, or is it something different you’re referring to?

Nothing is absolute – but most often, you’re talking about episodes of worsening. I would say that with the people I’ve had this conversation, for about 75% of them, it’s an episode. Not for everybody, but for the most part, it is.

What is the treatment?

For the moment, that gets more complicated. You probably understand that a rheumatologist’s answer to almost anything is a steroid. And that’s mostly what we’ve been doing. But all of these need to be formally tested and approved, and shown to make a difference. The ideas that are out now – there are some medications that affect the inside of blood vessels and one of the current thoughts is that the abnormality occurs at a very small blood vessel level in the brain, so that is one approach. Another approach is using the medications that largely come from modern psychiatry, which are the ones that are simply used for sleep disorders, and other drugs that keep you up, are being tried.

There is an interest in a type of antibody that can move from the blood to the brain – but the blood-brain barrier (which prevents certain things from reaching the brain), complicates things. Some drugs are designed to be able to cross the blood-brain barrier; others are designed on the assumption that the blood brain barrier is too leaky and it needs to be closed to prevent things from coming in. So those are the kinds of things that are under investigation, but we need to ensure safety of the medicine after medical trials showing that they work. I’m giving a frustrating answer, but the best I can say is there are a lot of ideas pending or on trial, but no specific answers yet, unfortunately.

I wanted to know about when you are writing, or texting and you’re thinking of a word and keep leaving out letters – but you know how to spell it. And then you have to look again – is that part of brain fog?

That is what I meant earlier about difficulty with “word finding” – and, yes, that is one of the symptoms. But again, I want to make it clear – there is nothing that is unique to brain fog. The question is, “Is it more than average for you?” But the answer would be yes – word finding is one of the big issues.

Is there an exhaustive list of the symptoms? As a patient, I can say, well – I have about 10 of the symptoms. But are there other symptoms that can occur that I may be unaware of?

The list of symptoms I shared earlier constitutes one of the list that neuropsychologists use to test for brain fog. It is chosen for a level of practicality. But we also have to take in context education level and skill when interpreting results. The tests usually take a long time, over two days. So it is difficult to say what symptoms provide a certain diagnosis because it varies very much from person to person.

There was a time when I was at the bank and realized I was not aware of the conversation I was trying to have. A different time, someone told me I was using three-word sentences to speak, and my speech was not coherent. If these are episodes, at what point do I need tell my doctor I don’t remember things, or have somebody call for help?

You bring up a lot of good points. Number one is that yours is a fairly typical story. Number two, is that you need to learn not to panic; they’re generally temporary. You can adopt strategies to help yourself. For example, I had a patient who drove to pick up her kids to school and drew a map of where to go which she would leave in her car just in case she ever forgot where to go when she was driving. Also, don’t think that you’re crazy. Don’t let other people say that you need to see a psychiatrist. But, yes – bring it up to your doctors. Like I said, we don’t have best answers in January 2017, but maybe we will in January 2019. But you can talk to your doctor to ask about what are the best things that can be done for you.

Presentation date: January 26, 2017.
Summary by Mayra Lemus Rangel, Social Work Intern, SLE Workshop Coordinator 2016-2017.


Headshot of Michael D. Lockshin, MD
Michael D. Lockshin, MD
Attending Rheumatologist, Hospital for Special Surgery
Director, Barbara Volcker Center for Women and Rheumatic Disease

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