A woman with lupus lays on a bed in pain, wincing, with pain lightning bolts zapping parts of her body.

Other Health Conditions Experienced Alongside Lupus

The journey to receiving a lupus diagnosis can be a long one. The symptoms of lupus can be nonspecific and overlap with many other conditions. Because of this, it can take years, many doctors’ appointments and several misdiagnoses to finally land on the correct issue.

We recently surveyed hundreds of people with lupus for our 2020 Lupus In America survey and the results were quite interesting. We asked about different aspects of life with lupus, including the path to diagnosis and other co-occurring health conditions. Some common responses we had are below.

Other health conditions alongside lupus

Of all survey participants, 99 percent had at least one other medical condition alongside their lupus. The most common of these was arthritis (osteoarthritis or wear-and-tear arthritis), allergies, depression, and chronic pain. All of these were experienced by roughly half of the participants. Other common co-occurring issues included neuropathy (numbness, pain, or tingling in the extremities), fibromyalgia, anxiety, insomnia, and weight issues (being overweight or obese). These were experienced by over 40 percent of all participants.

Several other conditions were also mentioned. The following were experienced by at least a quarter of all participants:

It is also no surprise to see several autoimmune conditions experienced alongside lupus since these types of issues often occur together. Some of these commonly co-occurring conditions include rheumatoid arthritis, Sjogren’s syndrome, thyroid issues, ankylosing spondylitis, psoriatic arthritis, vitiligo, Celiac disease, multiple sclerosis, and inflammatory bowel disease. About 7 percent of participants had also been diagnosed with at least one cancer, with skin cancer being the most common.

Being initially misdiagnosed

Since the symptoms of lupus can overlap with other conditions, landing on a lupus diagnosis can take some trial and error. About 4 in 10 participants (40 percent) said they had been initially misdiagnosed with another condition before finally being diagnosed with lupus. Some even had multiple misdiagnoses beforehand.

The most common misdiagnoses were fibromyalgia, rashes (or other skin conditions), rheumatoid arthritis, and chronic fatigue syndrome. These misdiagnoses were experienced by 30 percent or more of participants. Other frequently experienced misdiagnoses included thyroid issues, eczema or atopic dermatitis, heart conditions, blood disorders, or kidney issues.

Seeing multiple doctors to finally figure it out

These misdiagnoses and puzzling symptoms can lead to many different doctors’ appointments. Only 9 percent (almost 1 in every 10) participants needed to see 1 doctor get their official lupus diagnosis. About 60 percent saw between 2 and 4 doctors to get their diagnosis, and 10 percent saw 10 or more doctors. The most common tests used to diagnose lupus included:

  • Antinuclear antibody blood test (ANA)
  • Complete blood count (CBC)
  • Physical examination or clinical examination
  • Other blood tests including tests called CRP, ESR, and complement tests (all involved in the immune system response)
  • Medical history
  • Urine test

These results make it clear that the path to diagnosis may often be a rocky one with many twists and turns. What was your path to a diagnosis like? Did you receive any misdiagnoses or struggles along the way?

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