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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What does it mean to be in “remission” of lupus?

A MyLupusTeam Member asked a question 💭
September 7
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Answer Summary

Members explored what lupus remission means, with the community clarifying that doctors define it as no active organ disease and normal lab... Read more

Members explored what lupus remission means, with the community clarifying that doctors define it as no active organ disease and normal lab markers, though symptoms like fatigue and joint pain can still linger. Several members shared personal journeys spanning decades, with one noting that medications like CellCept and Benlysta made a big difference, while healthy eating, walking, and gentle stretching like Tai Chi also helped reduce flares. A recurring theme was that remission is possible but fragile, and the community offered warm encouragement to keep pushing forward despite the daily challenges.

A MyLupusTeam Member

Technically, rheumatologists define remission as the absence of active organ disease and normal inflammatory and disease marker levels. Unfortunately, we still often experience fatigue, joint pain, etc.

In my 41 years of living with lupus and 35 with lupus nephritis, I had a LONG period of remission of my organ disease, but I still had systemic symptoms. I am in organ remission again now--for the time being. The wolf always lurks, waiting to pounce! Great self-care reduces the chances of flares.

September 8 (edited)
A MyLupusTeam Member

Ive never really been in remission i think its having no disease activity

September 7
A MyLupusTeam Member

Teresa, is there a nutritionist/dietician at your residence who could help expand your food choices? I hope so!💕

September 9
MyLupusTeam

Remission in lupus means that the disease is no longer actively causing symptoms or damage — essentially, it's a period of calm after the storm. It doesn't necessarily mean lupus is gone, but rather that it's under control. For those with lupus nephritis (lupus affecting the kidneys), remission is defined more specifically Show Full Answer

Remission in lupus means that the disease is no longer actively causing symptoms or damage — essentially, it's a period of calm after the storm. It doesn't necessarily mean lupus is gone, but rather that it's under control. For those with lupus nephritis (lupus affecting the kidneys), remission is defined more specifically. It means that for at least one year:

- The kidneys are functioning well
- Little or no protein is found in the urine
- No active lupus symptoms are present

Reaching and maintaining remission for at least three years has been shown to significantly lower the risk of long-term kidney damage. For people with milder lupus, remission can last a very long time — sometimes 10 years or more. However, lupus is unpredictable, and flares can still happen even when doing everything right.

Some helpful questions to ask a doctor include:

- Am I on track to reach remission?
- How are my symptoms and organ function being monitored?
- What can I do to help stay in remission longer?

Sticking to a treatment plan, managing blood pressure, and keeping up with regular checkups all play an important role in maintaining remission.

September 7
A MyLupusTeam Member

@A MyLupusTeam Member Thank you for the encouragement! 💜💪🏾 I am determined to keep pushing!

September 9

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