Some say that the only thing constant is change. This can feel especially true for Lupus Warriors. Despite the value of tracking disease activity, measuring lupus disease activity remains a challenge.
Accurate, reliable measurements of disease activity are a crucial element of healthcare and research. Identifying changes in lupus disease activity can help people with lupus and their clinicians:
- Identify baseline levels of lupus involvement
- Evaluate effectiveness of treatments
- Develop optimal treatment roadmaps
- Discuss care decisions and participate in Shared Decision Making
- Track lupus over time
Researchers have worked to develop scales or laboratory tests for lupus but there are two main challenges:
- The complicated, multi-system nature of lupus and the presence of flares
- There is no “gold standard” and many scales are based on physician visual rating scales
- Many scales are based on physician visual analog scales which include some level of bias due to variance in physician experience and opinion
3 thoughts on “Measuring Lupus Disease Activity Over Time”
Interesting. Will doctors be using these tests at some point? Are they being used now? Should I bring this up to my rheumatologist?
I am diagnosed with mixed connective tissue disease, have just been through a hour-long episode of tiredness, barely able to function. Today, I feel ewll, like a different person. Is this normsl? Was first diagnosed with lupua.)
Two years ago I was diagnosed with lupus, changed to mixed connective disease. The last month, I have had extreme tiredness, barely a able to go tion. Today, oK feel well, able take care of my home, etc. Is this normal??