15 Questions - Depression and Lupus

(December 2012) Rex E. Jung, Ph.D., is an Assistant Professor of Neurosurgery at the University of New Mexico, a Research Scientist at the Mind Research Network, and a practicing clinical neuropsychologist in Albuquerque, New Mexico. He received his Ph.D. in Psychology from the University of New Mexico in 2001, and completed an internship in the Departments of Neurosurgery and Behavioral Medicine at Baylor College of Medicine, in Houston, Texas. His research is designed to relate behavioral measures including intelligence, personality, and creativity, to brain function and structure in healthy, neurological, and psychiatric subjects. He has published over 40 research articles across a wide range of disciplines including traumatic brain injury, systemic lupus erythematosus, schizophrenia, intelligence, and creativity. This month, he answered your questions about depression and lupus.


1. Is clinical depression a symptom of lupus (like a neuropsychiatric issue) or does this come later as a result of living with lupus? New Milford, CT

This is a great question, and the answer is complex: likely both. It is well established that lupus can affect all organs of the body, including the brain, and when the brain is affected one of the main symptoms can be depression. We do not know precisely how the neuropsychiatric issues leads to depression, but it is likely to be a complex interplay of biochemical abnormalities affecting the smooth operation of neurons (the cell bodies or “thinking parts”), axons (the wires linking the “thinking parts” together into networks) and the astrocytes (which supply nutrients to the neurons and axons). If there is some biochemical abnormality affecting this thee part system, whether caused by primary neuropsychiatric symptoms (such as a seizure or stroke), or secondary due to effects of lupus on the kidneys or other organs, this can lead to stress on the neuron-axon-astrocytes, which you experience as feelings of depression. On the other hand, having any chronic disease, including lupus, can lead to feelings of helplessness, dejection, and sadness, which are much more complex than mere biochemical processes. These “cognitive” symptoms of depression are as real as the “physical” symptoms, and both should be treated as part of a comprehensive approach to depression.

2. What are some of the signs of depression that I should be concerned about and notify my doctor?

Symptoms of depression range from “feeling blue” and “dejected” through feelings of “hopelessness” to most extreme feelings of suicidal thoughts and actions. This range of depressive signs is addressed very differently based on the level of severity of symptoms. For someone who is suicidal, this might entail immediate hospitalization to protect them from hurting themselves. For the individual with chronic feelings of hopelessness, the best research evidence suggests that a combined approach of cognitive-behavioral therapy (working on depressive thoughts that lead to maladaptive behaviors) and pharmacotherapy (i.e., medications) works better than either approach alone. For individuals that are “feeling blue” due to an acute life event, a more short term approach might suffice – perhaps talking to a family member, priest, or other trusted person who can help you through a tough time. More specific signs of depression that you would want to notify your doctor about include physical changes, for example in your sleeping or eating patterns (more or less), and other physical symptoms which reflect a higher level of concern, and which also might be related to other physical disorders that your physician might treat.

3. Is my rheumatologist the best doctor to deal with my depression? Washington, DC

Your rheumatologist is part of a group of doctors who will be helping to keep you well, both physically and mentally, across your life. Depending on your level of depression, you might be “best” treated by a psychiatrist; your depression might be treated by your primary care practitioner (PCP) who follows your general health; or, you might be seeing a counselor to treat your depression instead of treating your depression with medications. In any event, your rheumatologist should know both 1) that you are experiencing depression symptoms and 2) how they are being managed to best coordinate your care as it relates to lupus.

4. I notice that I only experience depression when I have a big flare. Is it possible the increase in my lupus activity causes depression? Phoenix, AZ

Most certainly – depression can be associated with a flare, also called “active” or “neuropsychiatric” lupus. It is important for your physician to determine whether your lupus activity is causing increased depression, or whether some other factor is contributing to your depression. Your physician well use the SLE Disease Activity Index (SLEDAI) to determine which, of a number of symptoms, are currently active (e.g., headache, vasculitis, arthritis, new rash), and whether the flare is mild, moderate, or severe in nature. While depression is not one of the specific symptoms on the SLEDAI, a flare could reflect something more ominous that could be related to depression (e.g., vasculitis, thrombosis, cerebrovascular accident) that might be causing your depression. Your physician will want to do a thorough workup to determine what is causing your depression, to treat it most effectively.

5. What if anything can be done to avoid depression in those diagnosed with chronic illnesses? I have tried changing my surroundings, increasing my spiritual life, reaching out to friends and family, getting more rest, etc., but to no avail. I have stopped short of seeking professional help because of logistics. Anything else you can offer would be appreciated. Bedford Heights, OH

This is a great question that I get often in my clinical neuropsychology practice where I treat patients with a wide range of brain diseases and disorders. There are three things that are critical to good brain health (and avoiding depression as well) that I can recommend. First, get some physical exercise. This does not mean that you have to run a marathon, and I can tell you that I am “a bit” overweight myself (former athlete with really bad knees, but really healthy appetite). However, most anyone can walk, or swim, or ride a stationary bike, or use one of those things where you run the pedals with your hands. You don’t have to huff and puff, just get your blood moving about half an hour a day. Second, get some cognitive activity – TV does not count; reading does. Hobbies are great for cognitive activity. Finally, get some social activity – engage with others in a meaningful way each day (if possible). You will notice that when you are depressed, your physical, cognitive, and social activity decreases: this course of action is designed to “work” the muscles (particularly in your brain) that help keep depression at bay.

6. Do you find that patients with depression also have anxiety and if so, what parts of their lifestyles do they most stress about? West Salem, OH

Depression and anxiety should almost always be discussed together as opposed to separately, as they often go hand in hand. Most times when people get depressed, they get anxious about all the things they are not able to do, are not doing, or “should” be doing. The feelings of helplessness in the face of life events can also lead to chronic feelings of anxiety and even hopelessness. These feelings of anxiety are often the target of so-called cognitive behavioral therapy (CBT) one of the most effective behavioral treatments for depression. In CBT, these erroneous thoughts (“I should be doing X”) are addressed through a wide range of techniques (e.g. relaxation, redirection, acceptance) in order to change behaviors and eventually mood. More specific to your question, the things that people “stress” about the most, in my experience, are the three big life tasks: love (“will they love me after my injury/diagnosis?”), work (“will I lose my job?”, “can I find work with my disease?”), and play (“what will I do with all my spare time?”, “will I have enough money to retire?”).

7. What can I do to improve the depression caused by my SLE medications? Fort Campbell, KY

That is a tough one, as your medications are critically important to treating your SLE, and at the same time, many have side effect profiles that include depression. However, one of the best ways to start is to work with your physician to see if you need as many medications as you are currently taking (as many medications interact with each other), and similarly to see if you need to stay at as high of a dose of your medication as you are currently taking. Each patient should take the minimally necessary dose to achieve therapeutic effects. Often, physicians start you on a medication, and it either works, or it does not effectively treat your disease. If it works, you usually just keep taking that medication rather than attempting to decrease the dose to determine optimal levels needed to achieve the desired effect. By carefully working with your physician, you should be able to continue to treat your SLE, while decreasing side effects, including depression. On the other hand, see my non-pharmacological response (above) to “build” up your defenses against depression, including physical, cognitive, and social exercise. Working this problem from both sides should help.

8. Has any particular treatment or medication shown promising in alleviating depression in lupus patients? If so, which ones? San Marcos, TX

I am unfamiliar with any particular medication that has been shown to be specific to treating depression in lupus. Men and women are different; so too are young and old patients; and then you have very different presentations of lupus including those with primarily skin rash, to those with severe neurological symptoms including seizure, stroke, or psychosis. It would be wonderful if such a medication existed for any presentation of depression across any disease; however, humans are just too diverse and variable in their physiology to have one pill to work for everyone.

9. Can the grinding fatigue causing worsening depression or is the depression causing the fatigue? Winter Haven, FL

These symptoms go hand in hand – I cannot imagine having “grinding fatigue” without some level of depression, and depression is well known to be associated with sleep abnormalities, changes in eating patterns, and the like, that would cause the body to not have the appropriate “fuel” necessary to work properly. Fatigue is specifically asked about on the Beck Depression Inventory, perhaps one of the most widely used measures of depression, with symptoms ranging from no fatigue (“I am no more tired or fatigued than usual”) to extreme (“I am too tired or fatigued to do most of the things I used to do”).

10. What's the best course of action for a teenage lupus sufferer who may be suffering from depression as the lupus is affecting all aspects of her life - most importantly her academic life. United Kingdom

In a previous answer, I indicated the three “pillars” of good cognitive health, which also applies to good mood health: physical activity, cognitive activity, and social activity. The same advice would apply here, although for a teenager, I would pay a bit more attention to the “social” leg of the three part plan, as this age group is particularly sensitive to the stigmatizing effects that lupus (or any disease for that matter) can have on their ability to make and keep friends. This might sound counterintuitive, as your question reflects particular difficulty in academic life. However, by concentrating a bit more on social “down time”, and a bit of physical exercise to counter the effects of her depression, it might be expected to have downstream effects on her academic life (she is already working, or at least expected to be working her cognitive muscles…). Talking with a counselor during this time could be an important part of the ongoing treatment for depression in this bright and sensitive young woman.

11. Since starting the Benlysta I have been feeling better. My fatigue is manageable; giving me a better quality of life (was pretty much bed bound). Now my depression has been very bad to the point of hospitalization. I've read that one of the side effects were worsening depression and suicidal thoughts. Do you have any information on this and should this be a reason to stop my Benlysta treatments? Manchester, NJ

I am very happy to hear that your medication regimen has helped with your fatigue. It is important to talk with your physicians about your ongoing symptoms to see if there is anything else that can be done to improve your depression symptoms. As I am not a medical doctor, I would be hesitant to offer specific advice on the medication you describe. Keep in mind, however, that not all people respond the same way to a medication, and similarly, they will not experience the same side effects. Just because a particular medication indicates a particular side effect does not mean that YOU will experience that side effect. Also, I would re-emphasize that combined therapies involving medications and cognitive-behavioral therapy have consistently been found to be of higher efficacy (i.e., they work better) than either intervention applied alone. If you haven’t availed yourself of such therapy to address your depression and suicidal thoughts, I would talk to a psychiatrist or psychologist about this.

12. I feel depressed many times and was wondering if menopause contributes to it. I've been postmenopausal since I was 37 years old due to Cytoxan treatment. I am now 50. Middletown, NY

Menopause is well associated with many changes in mood, including depression. It is time to talk to your doctor about whether your depression symptoms are at a level that might indicate treatment. He or she might refer you to a specialist to assess your symptoms, as your situation is a bit more complex, involving hormones and the interaction of these with normal aging, and lupus. Perhaps hormone replacement therapy might be indicated or other treatments involving some combination of pharmacological interventions. The first step is to have the conversation and see if something can be done to get you off what sounds like episodic feelings of depression of uncertain origin.

13. I am 19 years old and was diagnosed with lupus almost one year ago. My prednisone has been lowered to .75 mg a day, yet I still feel depressed a lot and get emotional very quickly over things I used to never get emotional over. Is this still a result of the prednisone? Hamden, CT

Prednisone treatment for lupus has been associated with depression, although this should “level out” over time as you become used to the treatment. The general theme of my advice regarding medications, that you have seen in all of my responses, is to talk with your physician to see if the depression is expected given the known side effects of you medication regimen or, if it is unexpected, requires additional treatment or referral.

14. Are there non medication alternatives to the treatment of depression?

Yes! And, being a clinical psychologist by training, my bias (full disclosure) is that by treating depression only with medications you might only be treating ½ the problem. The analogy I often use with my patients involves “doing some important work.” The medications are like the music you put on in the background; the lighting you provide; the quiet environment necessary to do the important work. But the work still needs to be done. That is where some of the “behavioral” interventions come in. The medications don’t do the work, but provide an optimal environment to get the work done. Sometimes, setting up the optimal environment is enough. However, if there are some underlying issues that can be worked on, therapy can really help to address behavioral changes necessary to achieve these important goals.

15. I have SLE have been trying to get pregnant. Am not taking immune suppression medications due to this which is hard on my disease. Lately depression and anxiety have been an issue. What medications are safe to take while we are trying to get pregnant? Horse Cave, KY

Most certainly consult your primary care physician on this – the research is constantly evolving and being updated. Likely, you will want to have a consultation with your rheumatologist, your PCP, and any other doctors involved in your pregnancy to coordinate your care during your pregnancy. This is a very important time to coordinate your care, between your physicians, to best control any symptoms associated with lupus or depression, while at the same time ensure the health of your child.