Lupus bloods

[123MrsG]

I’m just trying to learn about managing my SLE and everything still seems very new and strange. My understanding is that lupus blood test results do not tend to align with symptoms. But if lupus begins to be better controlled or becomes inactive, would this show up in blood tests? Eg would ANA or RF reduce? My recent blood tests haven’t changed since I started hydroxy 8 months ago. I’m still not feeling that great although I’ve definitely improved.

[NeuronerdDoaty]

Years from now it will still be new and strange. For me, until I dealt with symptoms for almost 30 years my labs came back negative if I wasn’t in a full on flare. Now even if I’m not they’re positive. Treat your symptoms and not the tests. Find a open-minded doctor and do what works for you. Best of luck to you and hang in there with us. This is a great group.

[KayHimm]

Great question. Looks like in the U.S. the tests for monitoring and diagnosing lupus now have specific guidelines. A large insurance company put out new guidelines as of April, 2019. The ANA, I think, is not used past diagnosis. They specify how often to do the anti DNA test and others for monitoring. As neuronerd said, you have to treat the patient.

Hope that helps.

K

[Roarah]

In my 20s I was diagnosed after my GYn noticed I had a butterfly rash, protein in my urine and a high positive ANA. I was treated with steroids and improved greatly. I stayed with annual rheumatologist appointments for years but never had bad flares during that time.

Then in my 30s I was a match for a bone marrow transplant. I was almost not allowed to donate due to a history of lupus but I asked to please let me partake in the pre surgery five hour physical and they conceded. During this I passed every test and scan and my ANA was negative and I was cleared to donate. I was dismissed from rheumatology after that until this year, 15 years later when it was discovered after a stroke that I had a slightly positive ANA again, 1:40. They will actually be retesting that again next week and I am feeling well now so I know it will be negative. So for me my Ana does come and go and it has only shown positive with symptoms. My ApLs also fluctuate in and out according to my symptoms as well. So sometimes blood can reflect disease I believe. I have negative titers with inactivity.

[Dalilatm]

I’ve had lupus for 20 years and Ive never paid attention to ANA. I do keep an eye on my haemoglobin, iron and bilirubin (which tells me about haemolysis), white cells (for infection), plaquelets (for bleeding) C3 (for lupus activity), and protein+blood in urine (for lupus nephritis).

Every lupus case is different. Some suffer from the heart, others brain, lungs etc. So you just learn what fits you and your specific situation.

Good luck!!

[miccika1]

ANA do not correlate w disease activity. There are plenty of people w positive ANA who do not have autoimmune conditions... Things like IgG and a few main inflammation markers is what you are looking for to normalise, not ANA or RF.

[123MrsG]

Great thank you everyone that’s really helpful. Before hydroxy I would get spikes in my crp and this has started to level off, so hopefully it’s a good sign. Sometimes I wonder if my expectations are too high and I need to go with the flow a bit more.