Lupus Questions, Answers, and Community

Lupus can make you feel like you’re no longer in the driver’s seat. But the speed and landscape along the journey continue to change. You might not be diagnosed yet, but you’re familiar with the ride. You might look to adapt, adjust, and revisit seemingly mundane life steps because the roadblocks of lupus continue to pop up with every twist and turn.

In this article, we’re featuring some of our forum discussions to open up the conversation for those hoping to (finally) receive a diagnosis, questioning their negative ANA lab results, wondering what to do when they develop other conditions, or looking for ways to manage the journey with lupus along the way.

Not yet diagnosed with lupus

Every year, our Lupus In America survey shows that people living with lupus experienced symptoms long before they were diagnosed. The Lupus Foundation of America projects that it takes nearly 6 years for a person to be diagnosed with lupus from the start of their initial symptoms.¹

Once diagnosed, people living with the condition hold a wealth of knowledge of the criteria, how their system reacts to it, and how they cope. That’s why it’s important to seek community. Check out this forum started by someone who might have lupus but is still in the process of testing and elimination.

Can I have lupus with a negative ANA?

Some people are diagnosed with lupus without a positive ANA test. The most common blood tests used to test for lupus include:^2-4

• Positive antinuclear antibody (ANA)
• AVISE® CTD to confirm a positive ANA test
• Complete blood count (CBC)
• Blood chemistry panel
• Comprehensive metabolic panel
• Immunologic tests

Help another community member out by answering their question about a negative ANA and their worries due to ongoing lupus symptoms.

Lupus plus other conditions

It’s often said that lupus invites all its friends to the party. That’s because developing other health conditions (called comorbidities) is common for those with lupus. Developing new symptoms and receiving new diagnoses can be a huge burden.

Comorbidities or complications that can occur with lupus include:⁵

• Heart disease
• Metabolic syndrome
• Infections
• Fibromyalgia
• Osteoporosis
• Depression and anxiety
• Antiphospholipid antibody syndrome
• Other autoimmune diseases

This is not a complete list. Check out this forum on what conditions other people are living with alongside lupus, and chime in. Let others know they are not alone.

What advice would you give a friend with lupus?

You are the expert on what it is like to live with lupus. You may have lived with it for years, or you may still be in the early stages of understanding your condition. What do you wish someone had told you when you were first diagnosed with lupus?

What if your friend were suddenly diagnosed with the condition? Share in the forum below to spread the power of knowledge, awareness, and advocacy.

Thank you to everyone who shared their wisdom within our community forums. We are grateful to hear from so many community members willing to offer feedback to those who need extra support on the bumpy road of life with lupus.