Non active lupus but still have the same symptoms

[rafael]

I’ve been told that my lupus is not active so how come I haven’t had any let up of the lupus symptoms. Anybody had the same?

[lupus-support1 Administrator]

Welcome!

It’s difficult to know what is going on without more details.

Is this comment from your rheumatologist based on what? Blood tests? Clinical examination?

What symptoms are you talking about?

Remission or non-active SLE is a term that is very confusing. It implies you are fit & well & without symptoms but this may not be the case.

If you are unhappy, which is understandable, I would ask to see your doctor. Non-active SLE May mean one thing to a rheumatologist and something quite different to a patient. Sometimes symptoms persist despite being told your lupus isn’t active.

I would speak to your rheumatologist.

With good wishes,

Ros

[Ck09]

That would be my experience too. Sometimes I feel like a fraud telling the doctor my symptoms and them telling me that my bloods show it is inactive. Sorry I can't help but you are not the only one!