eMedicine Specialties > Neurology > Inflammatory and Demyelinating Diseases
Systemic Lupus Erythematosus: Follow-up
Updated: Oct 30, 2008
Follow-up
Further Outpatient Care
- The overall outcome of CNS lupus, quality of life, and prognosis can be enhanced with close follow-up and coordination between the individual's neurologist, rheumatologist, and primary care physician. Neurologists and rheumatologists usually do not act as primary care physicians and leave health care maintenance to practitioners who need to be reminded to screen for various comorbidities associated with inflammation and complications of medication. Rheumatologists need to take the responsibility to ensure that their patients with lupus have optimal primary care access, which includes a working relationship with them.21
Inpatient & Outpatient Medications
- Acute treatment with immunosuppressants is followed by a prolonged outpatient taper, usually with PO prednisone.
- Gradual dosage reduction may result in a disease flare-up at some point, which is usually handled by a 10-20% increase in prednisone dosage with gradual taper again as the disease stabilizes and improves.
- GI protective agents and calcium supplementation (1.5 g daily in postmenopausal women, 1 g daily in all others) is routine.
- Symptomatic medication depends on specific disease manifestations. From a neurologic standpoint, treatment may include anticonvulsants, antipsychotics, antidepressants, stimulants for fatigue, NSAIDs, or muscle relaxants, and various medications for neurogenic pain.
Transfer
- Patients with an acute neurologic presentation generally require an intensive care unit and neuroimaging facilities. Hemodialysis may be needed if acute renal failure occurs.
- Physician comfort and access to experienced multispecialty consultation are usually more of a problem than medical equipment limitation.
Complications
- Potential complications include (but are not limited to) sepsis, paralysis, acute renal failure, additional embolic or thrombotic events, and hemorrhage induced by lupus anticoagulants or therapeutic anticoagulation.
- Pericarditis, pleuritis, and myopathy resulting from steroid or antimalarial use may occur.
Prognosis
- Overall, prognosis for SLE patients has improved dramatically in recent decades, with 70% now living 10 years after diagnosis.
- Neurologic complications worsen prognosis, especially in the presence of refractory seizures, encephalopathy, or paralysis from stroke or myelopathy.
- CNS-specific statistics are not available.
- Active SLE prior to pregnancy is associated with a less favorable maternal and fetal outcome. Hypertension increased the risk of fetal loss and adverse outcome. Phadungkiatwattana et al reported that preeclampsia was the most common maternal complication (20.6%).22
Patient Education
- The principle obstacle in long-term management is patient compliance with immunosuppressive, anticonvulsant, or other prophylactic regimens.
- Clear explanation of treatment goals and the consequences of poor compliance is essential. Ideally, such communication should be offered during the mid-to-late phases of acute illness when appropriate concern promotes maximal compliance.
- If appropriate, a translator for patient or family conferences should be utilized. Tailor communication to consider the patient's disease process, culture, and socioeconomic background.
- Consequences on work, family life, and childbearing should be explored.
- Possible adverse effects of medications should be listed without undue emphasis. Long-term issues (eg, adverse effects of chronic immunosuppression, other medication adverse effects, what to monitor that is symptomatic of opportunistic infection, SLE recurrence) may be deferred to subsequent follow-up visits at the discretion of the physician.
- For excellent patient education resources, visit eMedicine's Immune System Center. Also, see eMedicine's patient education article Lupus (Systemic Lupus Erythematosus).
Miscellaneous
Medicolegal Pitfalls
- In previously undiagnosed patients with SLE, the typical legal issue is delay in diagnosis that may or may not have contributed to irreversible progression of brain, spinal cord, or systemic organ damage, or death.
- Judicious ordering of an ANA analysis in the appropriate clinical setting is the best defense. As discussed above, confirmation that SLE is responsible for organ damage may still be problematic, given issues of sensitivity and specificity of the available diagnostic tests.
- If clinical presentation is especially atypical, explain this clearly to the family during the acute course. Clear communication with patient and family prevents most medicolegal problems.
- In the previously diagnosed patient with SLE, the major medicolegal risks involve the complexity of management. This chronic disease affects multiple organ systems. Therapy can be dangerous, and multiple, unforeseen complications may arise.
- The physician may have to trade benefit to one organ system for risk to another.
- Ongoing family education is essential to ensure that the general goals of therapy are understood. The patient and family should be consulted at appropriate choice points and must realize the overall risks and hazards of a critical situation. Try to correct unrealistic hopes or fears.
- A negative outcome in any patient, whether newly or previously diagnosed, always presents medicolegal risk.
- Poor communication with the family, treating a younger patient, and economic devastation of the family all enhance the likelihood of a lawsuit, independent of any actual negligence.
- Complex, critical care management still permits second-guessing by a resourceful plaintiff's expert.
- The best defense is good medicine and documentation, appropriate consultation outside one's own area of expertise, and good family communication. Even if these factors fail to prevent a lawsuit, they will improve the odds of a successful defense. Never alter documentation ex post facto, especially once a suit is filed. Late memoranda to preserve one's recollection should be addressed to the attorney. Do not append this to the patient record, since modifications inevitably appear self-serving and raise questions of the integrity of the chart.
More on Systemic Lupus Erythematosus |
| Overview: Systemic Lupus Erythematosus |
| Differential Diagnoses & Workup: Systemic Lupus Erythematosus |
| Treatment & Medication: Systemic Lupus Erythematosus |
Follow-up: Systemic Lupus Erythematosus |
| Multimedia: Systemic Lupus Erythematosus |
| References |
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References
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Further Reading
Keywords
SLE, lupus, systemic lupus erythematosus, connective tissue disorder, CNS lupus, autoimmunity
Follow-up: Systemic Lupus Erythematosus