Lupus is an autoimmune disease that can be difficult to diagnose. There are several reasons why it often takes a long time for someone with lupus to get a correct diagnosis.
The symptoms of lupus are similar to many other conditions
Some of the most common symptoms of lupus include fatigue, joint pain, rash, and fever. However, these symptoms can also be caused by many other conditions. This makes lupus difficult to identify based on symptoms alone.
Doctors may suspect conditions like rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, or rheumatic fever before considering a lupus diagnosis. Patients often get incorrectly diagnosed with one of these other conditions at first. It’s not until the symptoms persist over a long period of time or blood tests come back positive for lupus that doctors realize what’s really causing the symptoms.
The symptoms come and go
Another complicating factor is that lupus symptoms are not always present. Lupus causes flare-ups, where symptoms get worse for a period of time. These are followed by remission periods where symptoms improve or even disappear entirely.
The unpredictable course of lupus symptoms can make it very difficult for doctors to make an accurate diagnosis. A patient may go to the doctor during a flare-up when their symptoms are noticeable, but by the next appointment weeks later their symptoms have improved. Doctors may believe the symptoms have resolved, delaying the lupus diagnosis.
No single test can diagnose lupus
There is no one definitive test that can diagnose lupus. Doctors have to rely on a combination of factors, including:
- Physical examination
- Medical history
- Blood tests
- Urine tests
- Skin biopsy
Blood tests look for specific antibodies that are found in most lupus patients. However, some patients never test positive for those antibodies. That’s why doctors can’t rely on blood tests alone. They have to look at the whole picture of symptoms and test results, which takes time.
On average it takes 6 months to 1 year for a lupus diagnosis
Multiple studies have looked at how long it takes for lupus to actually get diagnosed after symptoms start. The results show it takes between 6 months to 1 year on average. Here are the findings from some major studies:
– In a study published in Rheumatology, the average time from symptom onset to diagnosis was 6 months.
– A study in the European Journal of Internal Medicine found the mean time to diagnosis was 8 months.
– Researchers reported in Medicine that patients experienced symptoms for an average of 11 months before lupus was diagnosed.
– A study in Arthritis Care & Research showed the mean length of time from first symptom to diagnosis was 1 year.
While each study found slightly different averages, they consistently show it takes about 6 months to 1 year from when symptoms begin until doctors are able to arrive at a lupus diagnosis.
Factors that delay the diagnosis
There are several factors that can increase the amount of time it takes to get diagnosed with lupus:
- Mild early symptoms – If the initial symptoms are mild, a patient may not seek medical care right away.
- Normal test results – Blood and urine tests may come back normal initially before positive antibodies are detectable.
- Attributing symptoms to other causes – Patients and doctors may assume symptoms are caused by something else like an infection or injury.
- Intermittent symptoms – Because symptoms come and go, doctors may think the problem resolved.
- Young age at onset – Younger patients are less likely to be diagnosed quickly since lupus is thought to mainly affect older adults.
Research has found women and African Americans also tend to have longer lags from symptom onset to diagnosis compared to men and white Americans.
Ways to get diagnosed faster
There are some things you can do to help speed up getting a lupus diagnosis if you suspect you have it:
- Keep track of all your symptoms – Note when they started, how often they occur, and their severity.
- Ask your doctor to run blood tests for autoimmune diseases.
- Get copies of all lab test results for your records.
- Point out if your symptoms are improving with anti-inflammatory medications.
- Request to see a rheumatologist who specializes in autoimmune disorders.
- Don’t delay seeking medical attention when you experience a flare-up.
The more informed you are about your symptoms and the diagnostic process, the better able you’ll be to advocate for fast and accurate testing.
It’s crucial to get a prompt lupus diagnosis
While the average lupus diagnosis takes at least 6 months, getting diagnosed sooner is beneficial. Lupus can cause permanent organ damage over time, especially to the kidneys, heart, lungs, and brain.
Treatment is aimed at controlling symptoms and minimizing flare-ups to limit cumulative damage. The sooner treatment can start after symptom onset, the better the long-term outlook.
A prompt diagnosis also reduces the likelihood of being wrongly treated for another condition. Taking unnecessary medications for something other than lupus can result in serious side effects.
The takeaway
The nature of lupus symptoms and limitations of diagnostic tests usually result in a long and winding road to getting a lupus diagnosis. While an average timeline of 6 months to 1 year is typical, being persistent and tracking your symptoms carefully can help speed things up.
With a proper lupus diagnosis, the right treatment can begin quickly to control this chronic autoimmune disorder and improve long-term health.
Frequently Asked Questions
What are the first symptoms of lupus?
Some of the most common early symptoms of lupus include fatigue, joint pain or swelling, fever, skin rashes, and trouble breathing. A distinctive “butterfly” rash across the cheeks and nose is also often an early sign of lupus.
Does it take years to diagnose lupus?
It’s possible for someone with lupus to go undiagnosed for years, but most patients will develop noticeable symptoms within 1-2 years of disease onset. On average, the time from first symptoms to diagnosis is between 6 months and 1 year.
What makes lupus so difficult to diagnose?
There are a few key reasons why lupus is challenging to diagnose:
- Symptoms come and go unpredictably
- Symptoms mimic other illnesses
- No single definitive diagnostic test
- Results of blood work may be normal initially
Can you have lupus for years without knowing?
It’s possible to have lupus for many years without being diagnosed, especially if symptoms are mild. However, most patients will develop noticeable symptoms within 1-2 years that will prompt them to seek medical attention, leading to a diagnosis.
Should lupus be diagnosed quickly?
It’s important to diagnose lupus as quickly as possible once symptoms develop. Fast diagnosis allows earlier treatment which can help minimize flare-ups, control symptoms, and prevent permanent organ damage.
Conclusion
Getting diagnosed with lupus usually takes between 6 months to 1 year after symptoms appear. The fluctuating nature of symptoms and lack of a definitive single test means ruling out other conditions first. But being persistent with doctors about recurring symptoms and keeping detailed records can help speed up the process to getting a lupus diagnosis and starting treatment.
