The Variable Progression of Lupus: From Health to ICU

The progression of autoimmune diseases is extremely variable. Even without treatment, some patients go into remission for many years, while others can become severely ill within a few years of diagnosis. Good medical care can significantly slow the progression of the disease.

A Personal Journey with Lupus

I progressed from a healthy individual to one suffering from symptoms for the first time and eventually, to ending up in the ICU in critical condition due to severe inflammation of my heart sac (pericarditis) and pleurisy (pleuritis). Lupus can affect multiple organs, which can be life-threatening.

Emergency medical care is essential in such cases. Lupus is a serious condition that should not be underestimated. It was the scariest time in my life, and it disrupted my family, career, and vitality. However, that was 27 years ago, and now I am still a lupus patient, though with the significant help of an excellent specialist.

I now see a Professor in Internal Medicine and Nephrology, who can provide the best treatment options and guidance. If you notice any symptoms, seek specialist care as soon as possible. Also, if the first doctor cannot provide a diagnosis, seek additional opinions until you are certain. Lupus is challenging to diagnose as not all doctors have the same expertise with the condition.

Every Patient's Journey is Unique

Especially in lupus, every patient has a different disease course. I have seen patients with minimal symptoms die within a year, while others in a coma recover and return to normal. Some patients with mild disease maintain the same mild condition forever, whereas some with severe disease continue to suffer. There is no standard trajectory for lupus, making it difficult to forecast the timeline for diagnosis and treatment.

One general rule is that the longer a patient goes without a particular symptom, the less likely they are to develop that symptom. For example, a patient without kidney symptoms for 10 years probably won't develop such symptoms. However, these rules do not apply consistently to Systemic Lupus Erythematosus (SLE), making diagnosis particularly challenging.

Importance of Early Diagnosis and Continuous Care

Early diagnosis and continuous care are crucial to managing lupus effectively. Patients should be their own best advocate and carer, ensuring that they do not ignore their symptoms and take care of themselves.

Encourage others facing lupus to be persistent and determined in seeking the correct diagnosis and treatment. Despite the difficulties and challenges, with proper care and support, living a good life with lupus is possible.

Good luck to all lupus patients on their journey to better health.