Test Results and SUPER confused

[GottaAsk]

Hey all! So I posted here a while back before the testing began with symptoms of the malar rash etc. So here is what is going on and I would love for anyone here to give me feedback that has been through this.

So I have all symptoms (aside from internal organ involvement) for Lupus and so far immunologist suspects a diagnosis of SubCutenous Lupus and ran ANA tests ahead of my Rheumotologist appointment to get a head start due to the amount of symptoms. The ANA came back 1:640 with Homogenous pattern but here is where it gets strange. I had no positive on the ANA panel for Lupus (such as Smith test and dsDNA etc) BUT, I did have the ANA towards Centromer B which is typical of CREST and Scleroderma. The thing is; I dont have all the symptoms of CREST but I do have all the symptoms of Lupus. So it raised more questions now than answers. Anyone had positive Centromer test with Lupus? And/or any idea if this means I have both or whats going on?

Thanks in advance for your time! My symptoms for Lupus classification is:

Fatigue/Weight Loss (lost 13 kilo this past month during a flare)

Malar Rash (immunologist confirmed is likely lupus rash)

Joint swelling and pain in hands and wrists

Raynauds

Swollen Lymphnodes in armpits off and on

Muscle pains

Mouth/Nose ulcers (without pain and lots of them that come and go)

Carpal Tunnel (had surgery)

Rashes on arms and hands that come and go

[OldTed60]

it’s quite possible to have limited systemic sclerosis and all of these symptoms too. The rash of spots associated with limited scleroderma can look very like a lupus butterfly rash. From personal experience I would say that the treatments are much the same so try not to get too hung up on the label. If no specific antibodies then they may call it UCTD as an ANA pattern is not specific enough to diagnose - it’s just a pointer.

Good luck with getting a diagnosis and treatment OT60🙂

[GottaAsk in reply to OldTed60]

thank you! Yes I’m just so confused. It’s already done predicted diagnosis of the lupus by the immunologist so maybe this with limited scleroderma 🤷🏻‍♂️ it’s all such a maze to follow. But you said it best - focus on the treatment not the diagnosis!!! That helps hugely free my mind while we wait.

[whisperit in reply to GottaAsk]

I think that's the only thing to do here. Detailed ANA analyses are not always definitive. Except where disease is serious and active, the treatment in the first months after diagnosis is likely to be the same, or very similar, for a whole range of systemic autoimmune conditions. A more useful diagnostic understanding often emerges as a result of our response to that treatment.

My own disease started out with the label of "UCTD/Overlap syndrome", and the primary symptom was "Interstitial Lung Disease". Later, I developed polymyositis, an apparently very different presentation, but the treatments have been essentially the same.

Hope all goes well in any case x

[GottaAsk in reply to whisperit]

thanks so much for this. I am feeding more confident already thanks to your comment here. The biggest thing is just that finally after 7 years they’re tackling it all! I’m sure we all share that same long path to figuring things out. Thanks again

[Wendy39]

It sounds like you have done your research and know what is going on with you. I use this table to help me and my support group re the various blood tests. There are also many resources on the LUPUS UK website and here's the NICE Guidelines for the Management of Adults with SLE. They have lots of information re diagnosis, monitoring and treatments.

academic.oup.com/rheumatolo...

lupusuk.org.uk/recommendati...

Best wishes

Wendy

Autoantibodies in Rheumatology

[GottaAsk in reply to Wendy39]

thanks so much this truly helps!!

[Wendy39 in reply to GottaAsk]

no problem at all. I should have also said it’s not unusual to have more than 1 diagnosis. So lupus and Sjogren’s and APS etc are common overlaps, as are thyroid issues and hypermobility/ EDS connective tissue symptoms. It’s very complicated!

[GottaAsk in reply to Wendy39]

thanks so much. I’m fresh new into this so I’m very anxious for my rheum appointment in November. This helps at least have a bit of knowledge around what’s about to be talked about.