Why isn't my rash coming out to play? HELP!

[Comeonpeeps]

I love this forum, it seems very popular and helpful.

Next week will be my 3rd attempt at getting a skin biopsy. After the 1st the dermo requested that I came off hydroxychloroquine for the time being.

For the first time ever, I've been out in the sun loads to bring the blotches out on my face and there's nothing.

I was supposed to be referred to a hand surgeon in April due to damage found on the wrist on MRI. This didn't happen, I've now got to wait AGAIN! Both the biopsy and appointment with the surgeon had my hopes up for a diagnosis which I've been trying to get for years! So I'm fed up.

The only abnormality in my blood was lupus anticoagulant-once.

Just wanting a bit of support please. Thanks.

[whisperit]

Hello Comeonpeeps,

Hmmm, how strange. As I'm sure you know, these auto-immune conditions often present in very odd and varied ways - no two people seem to be the same. Lots of us get diagnoses which change over time, and spend a lot of time in a kind of diagnostic no-man's land.

So do you have any diagnosis to date? Or more a slew of them but none that really makes sense? x

[Comeonpeeps in reply to whisperit]

Hi whis! Thanks for the reply. No, rheumatologist won't diagnose me but put me on hydroxychloroqine 18 months ago, which helped tremendously mainly with the fatigue.

I actually develped some lumps last night on my temple, which is different to my normal blotches but I've reacted. And got another splinter hemorrhage appeared today.

How long did it take you to get a diagnosis?

[whisperit in reply to Comeonpeeps]

I was diagnosed with heart failure at first, until a cardiac MRI showed no abnormalities. Then it was Interstitial Lung Disease and ?Sjogrens, for maybe 6 months. Then UCTD for about a year. I have obvious Raynaud's, but that's never made it onto my letterheads as a diagnosis! My latest official letter gave my diagnosis as Fibromyalgia with significant auto-immune features, but that is clearly a "placeholder" diagnosis while I await further investigations from neurology and endocrinology.

I confidently expect a couple more changes this year!

x

[Comeonpeeps in reply to whisperit]

I'm sorry you've also had a frustrating time. What has showed in your blood?

I have raynaud's too.

[whisperit in reply to Comeonpeeps]

ANA positive at 1:1280; anti-Rho positive; anti-ENA positive; anti-dsDNA low; Rheumatoid Factor weakly positive.

My concern isn't the label, of course, but getting the right treatment. It's taking a long time to sort... I expect it's the same for you x

[Comeonpeeps in reply to whisperit]

When did you test positive for these, right from the start?

I know what you mean, but, I think I'm on the right meds, but it still bothers me that I've not been given a label.

[leslieliesel in reply to whisperit]

My ANA 1:1280 also heterogeneous pattern .. ENA positive(low) Sm Positive...anti dsDNA, negative...and RASH..so far I have Cutaneous Lupus E (from one dr) and Discoid Lupus from my Rheumy.....checking for DM(skin muscle disease that scares the hell out of me)....oh well

[Puska]

Do you have SLE? It's just that Lupus Anticoagulant is a test for Hughes Syndrome /Sticky blood and not Lupus SLE. It needs 2 positive tests plus a blood clotting event/issue for confirmation.

[Comeonpeeps in reply to Puska]

Hi Puska, thanks for the reply. I think I have the skin and joint lupus but no diagnosis. And yeah I'm aware of Hughes Syndrome and the 2 positive tests. But I've heard that some lupus patients test positive for this with a negative ANA. What do you have?

[Puska in reply to Comeonpeeps]

I've got a positive ANA and 2 positive lupus Anticoagulant tests plus had a dvt 18 months ago so I've been diagnosed with APS and probable Lupus due to other issues. It takes some time to get a diagnosis which is frustrating as it's like they can see something happening but not enough to call it. The symptom that bothers me most lately is Raynauds as it's winter down under. My fingers are constantly turning white.

[Comeonpeeps]

Well she more recently put me on baby aspirin too, so she obviously thinks something is going on.

[leslieliesel]

I could almost chuckle....but I understand you need the rash to do the biopsy.....My rash that started this past spring was sceamimg..it still is pink...but I did get a biopsy and here I am..lupus..possibly Dermatamyotosis also...arrrgggg

[Comeonpeeps]

Hi Leslie, would they not diagnose from your bloods?