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Effects Of Lupus And Lupus Medications On Mood

Armen Hareyan's picture

Lupus can have a profound effect on one's mood and outlook on life.

Whether triggered by the physical symptoms of the condition itself, or as a result of side effects of medications commonly administered to lupus patients, the effects of lupus can have a marked psychological impact on those who live with it.

Lupus is a very complicated illness, and the various forms of the disease can affect people in different ways. Occasionally, this unpredictability leads to confusion, distrust, and stress.

Lupus is caused by an overactive immune system. Treatment is aimed at resetting the thermostat of the immune system so it's not overreacting without causing major side effects; in short, the goal is to try to return the immune system to being normal. Occasionally, however, there will be unpredictable effects of a medication.

This presentation aims to explain the differences between the psychological effects of the condition and the medications used to treat it.

The Impact of SLE Symptoms

Lupus presents in so many different ways that it is known as "the great imitator." The broad range of symptoms can confuse both patients and their primary physicians, and so an initial diagnosis is often very difficult to make.

Further, even when the diagnosis is made, it isn't possible to precisely anticipate the course of the illness. Delays in diagnosis and the unpredictability of symptoms tend to frustrate patients and can reduce their confidence in their medical teams.

An additional frustration relates to the fact that many of the symptoms of lupus are the sorts of aches, pains, and fatigue that are common among people who don't have lupus. People with lupus are, therefore, faced with further uncertainty: Is their symptom related to lupus, or can it be chalked up to aging or a completely unconnected ailment?

This uncertainty can lead people with lupus to worry that every symptom is a sign of SLE and to have problems believing their medical team when they say not to be concerned. Such uncertainty can also lead to vague, chronic worry about health and can interfere with the ability to make plans for the future.


Is lupus caused by stress? The short answer is "no."

While stress may appear to set off lupus flares, there hasn't yet been evidence to indicate that stress, in itself, is enough to cause lupus or a lupus flare.

This clinical evidence is important in that some people might blame themselves for their lupus, believing that their stress might have caused the lupus. Such a rationalization is very human and understandable, but the reality is that our understanding of the cause of lupus is incomplete but that it does appear that lupus is not caused by psychological factors.

There is some biological evidence of links between stress and lupus flares. Such research focuses on B and T suppressor cells, cytokines, and various types of antibodies. It should be noted, however, that these research findings are interesting but have not yet been shown to have clinical, practical relevance.

While stress does not seem to be a primary cause for lupus, it is clear that lupus causes people stress through its physical effects, its related uncertainty, and the resulting worries about physical problems.

Direct Complications of SLE

Lupus can directly affect thinking, mood, and personality. When it has these effects, it is called neuropsychiatric lupus. Symptoms of neuropsychiatric lupus include:

* Cognitive dysfunction: Refers to a variety of related experiences, including forgetfulness, worry, mistrust, and a general difficulty in thinking. Some people with lupus describe feeling "fuzzy-headed" or being in a "lupus fog." Often mild and reversible, cognitive dysfunction is commonly seen during lupus flares. These feelings are experienced by those without lupus as well, of course, and are perfect examples of the difficulty physicians face in diagnosing lupus.

* Depression and anxiety: May occur as direct effect of the lupus, as a psychological reaction to the illness, or as a reaction to medications used to treat lupus. Mood symptoms also occur commonly in people without lupus, and so it is generally difficult to be certain about what causes depression and anxiety in people with lupus.

* A personality change: This can refer to feelings of anger, irritability, and lability (the sensation of not feeling or acting like yourself). The unpredictability of these changes makes it hard for some people with lupus to connect with those around them. They may even wonder if their communication problems are the result of their friends and loved ones reacting poorly to their condition


Steroids are often central to the treatment of lupus, but steroids such as prednisone can cause all of the symptoms of neuropsychiatric lupus. Because neuropsychiatric symptoms are common in SLE, terms have sprung up that are widely used but are also often inaccurate.

"Steroid psychosis" is a term that some use for the emotional effects of steroids. It should be emphasized, however, that steroids don't commonly cause psychosis, but more often cause milder emotional changes, such as anxiety or depression. The term "lupus cerebritis" is used to specifically refer to the effects of lupus itself on the brain.

In trying to distinguish the cause of neuropsychiatric symptoms, it is useful to recall that lupus is more likely to be the cause than steroids when:

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* It has been more than two weeks after an increase in prednisone

* The prednisone dose was less than 40 milligrams per day

* The emotional symptoms improve with additional steroids.

Biology of Neuropsychiatric Symptoms

Those with lupus may wonder how their condition can directly and biologically cause problems with thinking and mood.

Often, there is a direct neurological involvement in lupus related to the autoimmune system. There remains controversy about how lupus affects the brain. Antineuronal antibodies (antibodies against nerve tissue) have been demonstrated, but it is not yet clear whether it these antibodies cause direct damage to the nerves. We know that patients with lupus, on no steroids, can have depression, delirium, confusion, mistrust, and even psychosis.

Anti-phospholipid antibodies are also present in some patients with lupus. Anti-phospholipid antibodies don't seem to cause inflammation, but rather are involved with increased clotting risk, and can be associated with stroke and cognitive problems.

Many of these neuropsychiatric effects are reversible, and there is a much lower risk of developing these problems if a patient with lupus only has joint and skin involvement, if the patient is ANA-negative or if the illness is a the result of a medication, which can be withdrawn.

The Psychological Impact of SLE

People react to having lupus in different ways, and these reactions can change with time. Some of these reactions may include:

* Grief

* Depression

* Anxiety

* Regression and reduced independence (due to physical limitations, etc.)

* Isolation and social withdrawal (due to unpredictable moods, a prominent rash, etc.)

* Fears of worsening disease and disability

* Fears of cognitive problems, stroke, kidney failure, becoming a burden, etc.

It is important to note, however, that along with these "negative" reactions, those in the lupus community have rallied around each other to promote the positive effects of taking part in their shared experience. Feelings of pride, endurance, connection, appreciation, and maturity have also been commonly seen in people with lupus.

Ways to Improve the Negative Effects of SLE

After opening the topic up for discussion in the workshop, it became immediately clear that everyone in the room had a different way to cope with - and improve - their own relationship with lupus.

Advice from workshop members ranged from treating yourself (to additional sleep, to your favorite food item, to a vacation, or a book, or a movie, or TV, or a visit to a favorite place) to communicating with those who understand, or at least can empathize with " your struggle.

While it's important to try to focus on the positive, it's equally important to accept that certain days will be difficult and that merely trying to remain positive may not be enough. As one member put it, "you can live with it for years and years, and some times are better than others."

"Be honest with yourself," added another member. "Sometimes, it's too much to ask to put on a front."

"Sometimes I find myself spinning my own wheels, staying angry," another member explained, "spending too much time on the Internet overdiagnosing myself, driving myself crazy. I had to tell myself not to obsess on the computer. Sit back. Get a different perspective."

One way to get a new perspective is to reach out for help and accept that it's okay to do so. Talk to those going through what you're going through. Isolation can set in, and it's important to realize that you're not alone.

A major benefit of talking with others who share your experiences is to understand which tools they use in their "toolbox." Each person has his or her own way of making their situation better, whether it's a technique such as muscle relaxation, yoga, TV watching, or reading. You may have your own tools, but you may find that the tools other people are using can help you as well.



Great article, describes exactly how I feel.
I am on the other side as a now ex partner of a man with Lupus. He has had acute Cerebal Lupus predominantly; but also has all the other acute pains, fatigue etc associated with SLE. we had about just over 2yrs of being bounced from one specialist to another with nothing found. This happened untill he was eventually sectioned under the mental health act because he had become so psychotic and a high risk of self harm & harm to others. His personality changed so much I no longer recognised him as the man I met. His psychosis was directed towards a fixed delusion of winning millions on telephone gambing and directly at me because he believed I was preventing him getting the money he believed he was owed. This fixed belief has never changed; even though he has 'accepted he may be wrong'. He actually admitted to me he had to give up fighting for the money 'he was owed' or he would never be allowed home from hospital. I feel so guilty because we have split up but I could not cope any more. Having to deal alone with the progression of undiagnosed Lupus with increasingly and rapidly worsening symptoms was extremely difficult. At these times there was no support for either of us because every test via Gp for various obvious conditions was negative As a result he was made to feel like a hypochondriac and a 'nutter' I have lost the man I met, fell in love wih and had wonderful happy years together before 'Lupus' hit us and just wrecked us. Now we've both lost so much that can it not be regained. I have seen so little written about Cerebal Lupus and if it is, its written as such a rarity with very little information. This has proved difficult for me in gaining insight and support for this type of Lupus as I was experiencing it as a partner of a sufferer. The effect of Lupus on mood can never be underestimated. It is important patients and relatives have a good understanding of how and why the mood can be affected in such negative ways; it may help relationships to survive this complex and unpredictable disease. In saying that medication has actually helped him to improve physically and mentally. But... since Lupus got hold of him he is still no longer the man I met.
That is sad that you left him alone because he is not the man you met. Let me ask you this if he was in an accident that affected his thinking would you of left him or if he had cancer would you of left him. That is the problem with this disease we usually always get left because it is not a popular disease. I hope to God I don't meet someone like you to love me . I know it is hard but what if the shoe was on the other foot . How would you like to be all alone . I gauremtee you karma will get all that only stay in a ealtionship when it is easy . I wouls rather have lupus and live with all I live with than to of never known about it and met and treated someone like yoou and mant other partners and family members . You will need help one day . Gos help you all you just do not know how bad it is to face this eith an army much less alone.
I hope when your in need there are empty arms for you as well! What goes around comes around always has always will...You took the easy way out! There is support all you have to do is look hard enough! You didn't look...You didn't try! This type of lupus is treated and reversed almost all the time. It is extremely important to know that this too shall pass...You didn't want someone sick..SHAME ON YOU!
I think people are being a bit harsh! I am going through a similar thing with my teenage son who is also become psychotic..They are running tests on him to see if he has lupus since it runs in the family..My sweet boy has wanted to kill himself..members of the family and others..He has become someone even he would dislike..And it is heart breaking..Its not easy and as a family There is no help! Were torn between the child we had and once knew to a stranger so differant..I am with him all the way..but it all depends on his test results..lupus or mental illness..if you know where to go for help..let me know because we sure need it..my heart is breaking as a mother
I was diagnosed with lupus in 1991 at first not so bad but a lot of pain now not only extreme pain but every thing described in this article and I just thought I am going insane Is this my future . I used to be so shap outgoing loved doing everything . Now add the fybromyalgia the class three end stage rnal failure and no new help in sight . I feel lke I have to prove that I have this disease unless they have been there they will never understand . The stress and the emotional pain is so bad right now I just want someone to say it is ok it is part of the disease . I want to live a pain free long peaceful life and this disease makes it so impossible because no one understands and I have lost faith in the medical community who never can get two to agree on the same treatment or diagnosis . I need someone . to help me we all need to stand up and say where is our day where is our help this is real ans it not only huerts the patient but everyone they love . It is devastating and I want a cure I need a rest . I am glad to know finally after twenty years what the fog is.