Lupus Screen / CTD Screen results : Hi guys, I’m... - LUPUS UK

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Lupus Screen / CTD Screen results

MemmaJ
MemmaJ

Hi guys, I’m awaiting my blood results from my first ever Lupus and I’m getting very impatient..!

It’s been over 2 weeks since I had the bloods taken now (the GP also added a Connective Tissue Disease screen), and results for other tests that I had taken at the same time ARE back (thyroid function etc).

I understand they may be sent away if your local lab doesnt do certain tests etc, but I’m wondering when I should start to worry that they may have just been lost or something instead..!

How long did it take you guys to get your Lupus is panel blood results..?

Thank you!

15 Replies
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Ask ask for the results two weeks is to long

If the ANA from the immunology panel is positive, the lab tests for specific antibodies (eg dsDNA which more-or-less means SLE) and these can take 3-4 weeks to grow in the lab...if only someone had explained these tests take a bit a longer xxx

PS if you've not had a prompt negative result, it possibly means suspicions you've had that something's up are correct...keep posting, let us know how you go, we're all in this together! xxx

Hi Memmaj,

You've probably still got another couple weeks to wait and longer still if the ANA is positive. It would then automatically go to the sub-group testing called ENA, which breaks down the anti-bodies to see if you have ones that match specific connective tissue diseases. It is such a shame that your doctor didn't tell you how long these tests actually take. It's up to a month for the ANA alone. Mine took a month. And I think I waited almost another 6 weeks after that for the ENA breakdown, which is like a genetic test and I'm not sure if they have to grow cultures or if the blood has to go through weeks long processes, but whatever is done is why it takes so long.

Thyroid and many other blood tests can be done in a matter of days or even hours urgently. But the anti-bodies are a different thing. It's awfully awfully hard to wait, I know, but know that this is the right time frame and you've still got a ways to go yet. I hope that takes some stress off.

Panda x

Hi so sorry your forced to wait until the results are in as it’s just so stressful and frustrating. They can take up to six weeks it’s how long I had to wait. I hope you get your results much sooner at least then you will have some answers. Keep us updated and have a great day. 😀

Thank you for your replies, it’s nice to know what’s possibly going on..!

Is there a chance that it could take this long and STILL come back fine/negative, just because of having to be sent away etc..? Or is it pretty much always positive if it’s taking this long..?

Thanks again.

Hi, I’ve roughly been waiting just over two weeks now and saw GP Tuesday. He said some are back high and ANA positive. The others take longer to culture in the lab and he also said my consultant would diagnose when I see him in March as they are open to interpretation for which connective tissue disorder it is. Hope that helps. I know it’s horrible waiting but at least we can have some answers. xx

eekt
eekt in reply to Angie245

So glad you're on the road to a treatment plan now, hoping it'll bring dramatic improvement in quality of life xxx

Angie245
Angie245 in reply to eekt

Thank you! It’s quite literally been hell! The pain is like nothing I’ve ever experienced and I have a high pain threshold! The steroids are already having an impact they don’t help with the pain and fatigue but they have helped my horrendously dry eyes! This has stopped some of the headaches and soreness around them! Also the skin rashes can also appear bruised so not having those all over my body and face also helps! I know I’ve been lucky to get such a quick diagnosis! Some people are waiting over a decade which is just shocking and unacceptable!

eekt
eekt in reply to Angie245

Here's hoping the only way is up for you from now on in! xxx

Won’t hurt to call and check but my ANA and RF results took a month to come back. Try to find something to distract you while you wait.

Well I’ve just had a response from my doctors... auto antibody screen negative.

I’m so upset, I really thought this was going to be the answer to me feeling better :-(

Disappointing not to be any further forward MemmaJ...I had a peek at your other posts...have you had ANCA tested? Positive ANCA is related to an autoimmune disease that can cause sinus problems (though if it's negative, it doesn't rule it out)

It's unusual, but autoimmunty can also be ANA-negative. Have you had a look at the Lupus UK info? xxx

MemmaJ
MemmaJ in reply to eekt

I don’t think that was one of the tests - this is what is says on my online patient info...

AUTOANTIBODY INVESTIGATIONS

HEp-2 cell autoantibody screening test Fine speckled

Very weak

Nuclear autoantibody screening test Negative

This test looks for antibodies to:

Ro, La, Sm, RNP, Jo-1, Scl-70, dsDNA, histones,

PmScl-100, centromere, nucleosomes.

JennaShi
JennaShi in reply to MemmaJ

Keep being persistent. Do you have all of your symptoms written down? If not it would be good to do so. There’s a reason you’re not feeling well and it could still be autoimmune related. Just recently my ANA went up to 1:160 but they included TPO antibodies so I am unsure if that had anything to do with it. Regardless I still can’t get in to see a Rheumatologist, so I have similar feelings. It can be frustrating but don’t give up though!

I think ANCA is one GPS can't order...ENT didn't suggest it? Try pushing for a rheumy referral after listing all your symptoms xxx

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