7 Tips for Newly Diagnosed Lupus Patients

Lupus is a chronic inflammatory autoimmune disease where the immune system targets healthy organs and tissues of the body by mistake. All organs of the body can be affected, including the brain, skin and even blood vessels. The signs and symptoms of lupus often last longer than six weeks when a patient has a flare and sometimes may last several years. There are several forms of lupus that patients can experience at once or at different points in their lives.

Currently in the United States, there are 1.5 million people living with lupus, and many patients aren't sure of what to do or which way to go once diagnosed. It's important for patients to understand what their disease is and what it means for them. 

We have gathered a few tips and guidelines for patients who are newly diagnosed with lupus and feel totally alone because of it. While every one is different, we hope that most of these, if not all, would help you as you learn and understand your condition.

Common symptoms of undiagnosed lupus

Lupus disproportionately affects some ethnic populations. Women of African descent and Latina women tend to represent the vast number of lupus patients, particularly the very severe cases. To a lesser extent, women of Asian, and Native American descent are also affected, while Caucasian women represent the least diagnosed cases. It may be difficult to spot what are lupus symptoms at first, but they’re always present as the body will show signs of the disease.

A constant low grade fever that doesn’t go over 101 degrees is usually not only a sign that someone may have lupus, but that the body perceives an infection. When fevers occur, it’s usually because the immune system has determined that an infection is present. But, lupus is an autoimmune disorder that causes the immune system to attack healthy organs mistakenly, so a consistent fever without signs of infection is often a sign of the presence of lupus.

At some point, everyone has periods where they don’t sleep well and experience days that they can’t seem to stay awake. That’s normal. For someone that may have lupus, there will be overwhelming tiredness even after a full night of sleep. They may find themselves unable to keep from nodding off at work or paying attention. Some may take daytime naps to alleviate this feeling of constant fatigue and that may work, but most often it does not and may cause insomnia when it does create a cyclical problem.

Diagnosis and after diagnosis tips

The diagnostic process of testing for lupus is not a very straightforward one. Many tests may be done and different specialists may be visited before an affirmative diagnosis is made. While there is no true diagnostic test, physicians may run blood count, urinalysis, antibody tests as well as chest x-rays. They most likely will also test for malar or butterfly rashes to confirm sun sensitivity, mucus membrane ulcers, check for heart or lung issues, such as murmurs, irregular heartbeats and rubs, arthritis, hair thinning and loss.

Once a diagnosis is made however, there are many things that can be done to make the daily life for the patient easier. Some of these will be medication-related items, but many more will be lifestyle changes that include not only the patient, but those closest to them.