"One-off" USA lab test for SLE has proven effecti... - LUPUS UK

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"One-off" USA lab test for SLE has proven effective...

Barnclown profile image
Barnclown
β€’21 Replies

...and is helping doctors diagnose patients with "Difficult-to-Diagnose" Lupus

HMMM πŸ€”...this news is making me think ....

Here is an excerpt from the press release, as quoted by Sara Gorman of the popular Despite Lupus Blog:

"Marketed as Avise CTD, the diagnostic tool has recently been proven in studies to be a significant improvement over traditional lab tests. It is the only validated lupus test available incorporating scientifically proven CB-CAPS technology, and it is having a big impact with doctors and their patients"

Click on this link for the whole official press release:

thevistapress.com/46910-2/

And here is the Despite Lupus link:

despitelupus.blogspot.co.uk

πŸ€πŸ€πŸ€πŸ€ coco

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Barnclown profile image
Barnclown
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misty14 profile image
misty14

Hi Barnclown

Many thanks for sharing this lupus test breakthrough. I wonder if we will be able to have it here?. It could help so many of us get a proper diagnosis.

I hope you are as well as can be X

Barnclown profile image
Barnclown in reply to misty14

Exactly...I do wonder too...and I cannot help but wonder if this test actually will stand the "test of time"....fingers crossed it does....but I am so wary of easy peasy solutions...eg why haven't we heard more about this by now....am going to ask everyone I can eg my lupus clinic etc... πŸ˜˜πŸ€

misty14 profile image
misty14 in reply to Barnclown

Hi Barnclown

We tend to be behind your good friends across the pond because of funding issues!. Good idea to ask your Rheumy, I will too. Interesting what we learn. X

Barnclown profile image
Barnclown in reply to misty14

So true so often... πŸ‘πŸ€πŸ˜˜

Penelope-Mary profile image
Penelope-Mary

Oh good, a read....thank you coco! Always something stimulating from you πŸ‘πŸΌπŸ‘πŸΌ Bravo!!

Barnclown profile image
Barnclown in reply to Penelope-Mary

Am so glad...you're always welcome, PM πŸ˜‰πŸ‘πŸ˜˜πŸ€

Happykins profile image
Happykins

Thanks for sharing this Coco, as always, your posts are v enlightening xx

Barnclown profile image
Barnclown in reply to Happykins

πŸ‘πŸ˜˜πŸ€

johare profile image
johare

What a week. At last a new drug is finally approved here when its be approved, as far as I'm aware in America and Europe for a while and now our own test!

Barnclown profile image
Barnclown in reply to johare

πŸ¦„πŸ¦„πŸ¦„πŸ¦„?????πŸ€—πŸ€—πŸ€—πŸ€—

noonoo52 profile image
noonoo52

Hi coco, see Professor Edwards this Saturday will take a print out for him, he possibly already seen it, but would be great to have that test across the world to give patients a quicker diagnoses. Well done coco, our Illustrious leader comes ups trumps again.

πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ‘πŸ»πŸ˜‡Β 

Take care coco,Β 

Love noonoox

Barnclown profile image
Barnclown in reply to noonoo52

Ooooo: please let us know what the prof says! Β Am just feeling that things like the debate over sero neg diagnosis makes tests like this one yet another opportunity for medics to leave suffering patients in limbo...πŸ€”

πŸ€πŸ˜˜πŸ€πŸ˜˜

noonoo52 profile image
noonoo52 in reply to Barnclown

Yes coco I totally agree, the years of patients going undiagnosed, diagnosed and re-diagnosed could now be a thing of the past. It would be a wonderful day if it happens. Now all we need is a cure.

I was amazed by a comment made by the girl I spoke to on the telephone when speaking to the medical insurance company getting authorisation for my visit, she said this is a new thing Lupus, I was taken back a bit thinking how do I explain this, we had a chat and I said do some research on the disease, you will find it very interesting and informative so when you next speak to a lupus sufferer you will be well informed. I think from another comment from her that specialist don't necessarily make it a point to give that information that their patient do in fact have lupus as she said you are not covered for any treatment for lupus, I said there is no treatment as such other than medication. I guess she was saying that if I needed a transplant because of the disease then I would not be covered.Β 

Reference the tests I suppose it's a case of watch this space. We don't yet know the cost implications. As someone said its the funding in this country.

Take care.

Love noonooxπŸ™‹πŸ’‰

nanleighh profile image
nanleighh

I don't think that this is mainstream. Because if it were rheumatologist here in the U.S. would be ordering the test and they are not.Β 

Barnclown profile image
Barnclown in reply to nanleighh

Thanks - v interesting πŸ€—πŸ€

noonoo52 profile image
noonoo52 in reply to nanleighh

Apparently is was tested in 15 lupus centres across America, it's taken years to get to that so it will probably take years to get anywhere else, no different to newly developed drugs. I found some info on youtube.

We can only hope for future generations.

Barnclown profile image
Barnclown in reply to noonoo52

Gosh...thanks so much noonoo... πŸ€πŸ€πŸ€πŸ€

noonoo52 profile image
noonoo52

Hi coco, follow up on this topic. Saw the Prof this morning and at the end of the appointment I Mentioned this CB-CAPS technology, I also gave him a print out from vista press from your link. The prof said that it was posted in a journal that is recognised but not one of the top journals, if it worked it would be in the BMJ (I think online) I thought he was going to through it in the bin and I said this to him but he said no I am taking it with me to look into. He carries out a lot of research so hopefully he may have some news in 6 weeks when I see him. I think you can read about him on the Southampton.ac.uk/medicine/about/staff

Or just look up Professor Christopher Edwards Rheumatologist it's quite interesting subjects he has written about. Well I found it interesting.

I suppose again it's watch this space.

Take care coco. πŸ˜ŽπŸ€πŸ€πŸ€πŸ€πŸ’πŸ’πŸ»

Barnclown profile image
Barnclown in reply to noonoo52

πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘ this is insider knowledge, noonoo: FASCINATING: many thanks: am looking of inward to your next report! Will look into Edwards: am so glad he is by your side!

πŸ€πŸ˜˜πŸ€πŸ˜˜

Inthelupus profile image
Inthelupus

I just got my results vack from the Avise lupus test. While I am glad for more β€œproof” because every new doctor always wants to prove for them selves it really IS lupus, the standard for diagnosis us still a doctor’s decision on the 11 common criteria.

Barnclown profile image
Barnclown

V interesting. Thanks. I think i’d feel the same way.

In the UK the NHS follows a set of strict internationally devised diagnostic criteria for all forms of lupus & lupus-like conditions, even though these were primarily designed for monitoring lupus.

As i understand it, medicine is unlikely to switch over to a once off lupus test anytime soon

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