The Invisible Burdens of Lupus


Professor Matthias Schneider, MD, PhD, President, European Lupus Society

Ahead of the 2018 European Lupus Meeting (SLEuro), Brad Nohe, Head of Lupus, Global Product and Portfolio Strategy interviews Professor Matthias Schneider, President of the European Lupus Society, to discuss his research on the impact of fatigue and stress on a lupus patient’s quality of life.

How does lupus impact a patient’s quality of life? Which symptoms affect them most?

Professor Schneider:  The most prominent lupus symptoms that impact a patient’s quality of life are fatigue, then pain, and concentration disturbance. These prominent symptoms influence their relationships with partners and families and their careers, which is also a very important aspect of quality of life. Some patients no longer feel as though they have the chance to fulfill their ambition for all they can accomplish professionally. These symptoms also influence their social life because on the one hand they have less money when their career suffers, and on the other hand, the unpredictable nature of their pain and fatigue means they cannot make any firm plans, because they are not sure whether they can keep them. And then it leads finally to changes in their mental health, in combination with problems concentrating. That's the picture a patient is showing us, which is a completely different picture than what we see or believe as physicians.

How does the physician see things differently?

Professor Schneider:  I think it's a completely different evaluation system. A physician looks at the manifestation of the disease, which is mostly driven by analysis of the organ involvement. Are their kidneys involved? Are their lungs and heart involved? Are the joints or skin involved? That's the way a physician is looking at it, because that's part of the story we have control over. Whereas a patient’s fatigue, pain and stress is not mirrored in what physicians see. Often, if disease activity is under control through the medication, physicians may not address the patient’s other problems and quality of life concerns.

How common is fatigue in lupus?

Professor Schneider: In a European survey, 90% of patients had severe fatigue that influenced their daily activities and career – 90% is a high number.1 We were a little bit worried that we had an unrepresentative selection of patients, but we didn’t as other studies have gotten the same results.2 Fatigue is not only a problem in lupus patients. It is also common in other chronic diseases and even cancer, but in lupus it seems to be much more prominent.

Why does fatigue occur in lupus?

Professor Schneider: We are currently conducting research in my lab analyzing 20 different reasons that could explain fatigue in lupus, and how often each one is present in patients. Some of these reasons are related to inflammatory reactions including disease activity, infection and anemia which can cause fatigue. Fatigue can also be caused by pain, a vitamin D deficiency or depression. You may also have a patient with an aerobic impairment or fibromyalgia contributing to their fatigue.

So, there's different known reasons, and I believe that there'll be something leftover, and that will be unexplainable fatigue. For example, if you have a viral infection you also have interferon activation, and that may be related to fatigue. That's the complex picture we see in lupus, and we are trying to further understand how much different factors are contributing to the fatigue that patients experience.

How does stress affect patients with lupus and how can they manage it?

Professor Schneider: That's a very difficult question. Some patients react to stress a lot and when that happens they need more drugs, because they have more signs such as skin manifestations. That actually happens very often. When we experience stress, we know that our immune system is activated via our sympathetic nervous system, but why it's also stimulating the autoimmune reaction is not completely clear. Then it's a question of how patients handle it, which becomes more complex and brings us back to our earlier discussion about how lupus affects quality of life. The experience of having lupus influences a patient’s daily activity, and their social life, so they're becoming stressed much more often, because the hurdle for stress is lower than in other people. A lot of the stress of having the condition contributes to the flares of the condition – it's a vicious cycle.

It's something you have to learn as a patient – that you somehow accept your disease and its manifestations, yet on the other hand, work against it. It means actively coping – not passively coping and becoming depressed about your disease. For some patients, that might mean seeing a physchologist in addition to her physician.

How does fatigue in lupus compare to fatigue in other autoimmune conditions?

Professor Schneider: In my experience, Lupus patients seem to have more fatigue in general than the other systemic autoimmune diseases. Multiple sclerosis (MS) patients may have a similar prevalence of fatigue, but we don’t see it as much in other rheumatic diseases. Patients with rheumatoid arthritis or scleroderma experience fatigue, but it's not as dominant as it is in lupus patients. This makes us question where it’s coming from. Could it be related to cerebral activity of the immune system that we don't see? We don't know, but that may explain the similarity to fatigue in MS.

Fatigue can manifest itself in different ways for different patients as well. They experience it on the physical side during their day-to-day activities and also on the mental side which contributes to depression. Most lupus patients don't speak about their fatigue. They live with it like it's a part of them they can’t change, like their blue eyes or red hair. They carry it with them, not speaking about it, because too often physicians may not offer help or support to deal with fatigue in lupus.

It’s important to continue to study the relationship between lupus, fatigue and stress in more detail because I think one of the biggest issues we face in treating lupus is that we probably don’t see the complete activity of the disease. When we evaluate disease activity using our current instruments we don’t really know whether we are painting the full picture of lupus. We need to continue to pursue research in lupus to explain what remains unexplained.


  1. Schmeding A, Schneider M, Fatigue, health-related quality of life and other patient-reported outcomes in systemic lupus erythematosus. Best Practice & Research Clinical Rheumatology. 2013; (27):363-375 doi: 10.1016/j.berh.2013.07.009
  2. Ozel Filiz, Argon Gulumser. The effects of fatigue and pain on daily life activities in systemic lupus erythematosus. AGRI Pain. 2015 April; 27(4):181–189. doi: 10.5505/agri.2015.38278.