Michelle Petri, MD MPH, Associate Professor, John Hopkins University School of Medicine, Baltimore USA
Systemic Lupus Erythematosus ( SLE ) is a disease whose severity spans a spectrum, with some lucky patients having mild organic involvement ( such as malar rash, canker sores, joint pain without swelling ) and other patients having severe organ involvement ( such as found in the kidneys and brain ). Physicians who treat SLE will often describe the disease as mild, moderate or severe, usually on the basis of the severity of the organ involvement and the potential for permanent organ damage. Several times I have caught myself saying to one of my patients "You have mild lupus", and then I stop to explain that when I use the term "mild" I mean that the disease is not life-threatening and that no important organs have been damaged.
This does not address, however, the impact of lupus on the patient's day-to-day life. The impact on a person's ability to function is termed "health status" or "quality of life". For decades, this aspect of the disease was ignored. Now, reliable measures of health status exist that allow clinical researchers to assess the impact of SLE on patient's lives. These questionnaires have been used with many other diseases besides SLE, allowing disease- to- disease comparisons to be made.
Two of those questionnaires, the SF-20 and SF-36 ( the 20 and 36 refer to the number of questions asked ), have been extremely useful in patients with SLE. In large academic centres, these health status instruments show that patients with SLE have the equivalent quality of life as patients with HIV infection.
We have used SF-20 to measure self-perceived health status in our patients with SLE. The SF-20 measures health status overall, as well as in separate domains, such as physical function, role function, social function, mental health, health perception and pain. In a recent study we compared our SLE patients with "controls", or normal people.
Our SLE patients were impaired in ALL domains, compared to the controls. The effects of SLE on the patient's "real-life" are all-encompassing and cannot be explained by the patient's age, race, education, or socioeconomic status. For example, only 43% of SLE patients rated their health as good (versus 87% of control). SLE patients were more limited physically than controls on every question asked. 62% of SLE patients said that SLE prevented their working and 30% could not function socially. SLE patients were more depressed than controls on all five mental health questions.
When we, and other centres in the Systemic Lupus International Collaborating Clinics Group, asked SLE patients which symptom or other factor bothered them the most. The answer was fatigue. In our centre, 59% of patients reported that fatigue caused frequent problems ( versus 11% of controls ). Fatigue is such an essential factor in SLE patient's well-being that the ongoing trials of DHEA in the treatment of SLE include the Krupp Fatigue Severity Scale as one of the assessment at each visit. Scores on the Krupp Scale correlate well with overall scores on the SF-20 and other overall measures of health status, as well.
Authorities disagree, however, on whether fatigue should be considered when measuring the activity of SLE. There is no doubt that, in selected patients, an increase in fatigue may be the first sign of lupus flare. Some scales to measure disease activity include fatigue but others do not. Many other factors contribute to fatigue, especially chronic fatigue in SLE.
Among the physical factors not directly related to disease activity are anaemia, endocrine problems ( such as hypothyroidism ), drug toxicity, chronic pain, poor nutrition, obesity, and steroid myopathy ( weak muscles secondary to prednisolone ). Among the emotional causes contributing to fatigue are grief, depression, stress, anxiety, helplessness, and overdoing.
Recent research has drawn attention to a syndrome, fibromyalgia, which frequently co-exists with SLE. Fibromyalgia is a chronic pain and fatigue syndrome presenting as muscle and joint pain frequently with chronic headache, non-restorative sleep, and irritable bowel syndrome. In causes characteristic symmetric tender points throughout the body. As many as 40 out of 100 SLE patients may have Fibromyalgia, which may account for their fatigue.
Many patients with SLE and chronic fatigue become discouraged when physicians cannot cure fatigue. There are no simple fixes. To determine the cause or causes of fatigue. The approach should be multifactorial, including an assessment of disease activity, Fibromyalgia and contributing factors such as anaemia drugs, hypothyroidism and depression.
If the only cause of chronic fatigue is found to be Fibromyalgia, a major rehabilitative program emphasising aerobic conditioning should begin, along with the use of tricyclic antidepressants. Complementary to this approach can be the use of alternative modalities for chronic pain, including acupuncture and behavioural medicine.
We hope that research into new treatment modalities for SLE and will find new drugs that will diminish lupus fatigue as well. In the meantime, patients with lupus should try to incorporate a program of physical rehabilitation into their lives, after consultation with their physicians. Not only will this help many of the factors contributing to chronic fatigue in SLE, but it will also help preserve cardiovascular health and bone mineral density.
Disclaimer :
The Lupus Group of W.A. (Inc.) does not recommend or endorse any products, drugs, treatments, procedures, medical or health professional in this article. We suggest you discuss this information with your doctor or specialist.