Has anyone heard or tried this test? I will like the website and government article below incase anyone is interested and hasn’t heard of it. Haven’t heard of this one myself and would be interested if anyone would like to share their experiences with this test.
ncbi.nlm.nih.gov/pmc/articl...
Thanks!
Yes, I’ve been taking the Avise tests for a couple of years now. I heard of them when it was new and contacted the company and was put in contact with a rep who worked with my doctor to get the testing done. The rep drops off the test kit to my doc who fills out requisition (order). I use my same lab for the blood draw and then box up the sample and Ship it to the Avise lab. Results are sent to my doc who then sends a copy to me.
I’d already been diagnosed with SLE and Sjogrens when I took the baseline Avise test. Avise testing confirmed my diagnoses. Since that initial testing, I get the monitoring test every year to see if my dosage of Plaquenil (hydroxychloroquine) is adequate. I’m due to take that test again in a few months.
Are you in the UK? Can't see to find out if it is available here or just in the USA. Thanks
I saw your question and I did email them to ask. You’re right, it doesn’t say anything about where the test is made available and I apologize, I got a bit excited and I didnt think to ask before making this post. I will let you know once I get a response or you can call/ email as well if you would like or have any further questions.
Hello I think it's an American based thing, and from what I can see the "Avise" is just a name for doing all the basic immunology blood tests eg ANA, the ones which come under ENA, immunoglobulins, complement proteins , RA. I think in UK any good rhuematologist would be requesting a "full immunology screen" that includes these tests for anyone suspected of having Lupus , so I'd personally say no need to pay, trust NHS labs.
They do seem to offer some kind of "bound complement" test in the avise test which is a new one to me, possibly not any use anyway unless your body affects your blood complement levels and only scientific studies I've seen on that are the scientific papers they've submitted
It will be interesting to see if this avise test helps diagnosis in the USA, as perhaps things are different there if people have to pay to see rheumatology, pay for blood tests
I believe bound complement is just c3 +c4 . It is a standard autoimmune panel for a lot more money offered to people who already likely were found negative for most of the assays. Self testing businesses disgust me. 
Hi JennaShi!
I've been dealing with Lupus and Sjogrens symptoms for years. The last rheumy appt was in Jan 2018. He basically fired me as a patient because all labs came back "normal". If it weren't for you I never would have known or heard of the Avise test. I jumped on that! It looks so promising. I wrote my doctor and told her I wanted to try this test. Luckily she was on board. They let me know when the kit came in. I had my labs done Tuesday morning before work. I'm anticipating the results. Hopefully next week I'll know something. I've had positive ANA for years, along with low white blood counts, high A/G Ratio's, low complement scores and numerous other flags. The last doctor told me I have autoimmune disorders but nothing with a definitive name. So frustrating. I have swollen joints, ongoing neck pain, very photo-sensitive, gastrointestinal issues since a child, dry-eye/mouth syndrome and the list goes on. Here's hoping for definitive results in the next few days!
Im so glad you were able to jump on it and I hope it provides clarity for you! I’m sorry to hear about your symptoms and how your doctor has treated you! Unfortunately they seem to only diagnose when your bloodwork and signs are clear. But alot of us know symptoms often appear first. Best of luck to you and will be praying over your situation!
The second link is not a real study or meta analysis, it is really a fancy infora commercial. The authors of the article are employees of the company that makes the tests as stated on the last page in the conflict of interest section. Patient led testing is a very controversial business. This company's main objective is to make money on patients' vulnerabilities.
These companies play to the already tested yet not criteria diagnosed patients' hopes for a solution. It is most likely the results will be the exact same as the rheumatologist's determination that it is not a specific autoimmune disease as the tests in this assay are what a good rheumie already ran. They are not covered by insurance usually as well and can be pricey. Use carefully please. Many of the antibodies in this assay even if they are positive need clinical criteria to be considered for a diagnosis, like the APLs bunch.
Antinuclear Antibodies (ANA) testing is performed on all samples.
1. If ANA is positive, the following tests are automatically ordered and performed (at additional charge): Complement C3; Complement C4; Patterns; Anti-dsDNA (Double-stranded) Antibodies; Antiextractable Nuclear Antigens; Antiscleroderma-70 Antibodies; Sjogren’s Antibodies (Anti-SS-A/Anti-SS-B); Antichromatin Antibodies; Anti-Jo-1; Anti-Centromere B Antibodies; Prothrombin Time (PT); Partial Thromboplastin Time (PTT), Activated; Thrombin Time; Dilute Russell’s Viper Venum (dRVVT); Hexagonal Phase Phospholipid; Anticardiolipin Ab, IgG/M, Qn; Beta-2 Glycoprotein 1 Antibodies, IgG/M.
2. If ANA is negative, the following test is automatically ordered and performed (at additional charge): RheumAssure performed at Esoterix Endocrinology Laboratory. If RheumAssure is negative, the following test is automatically ordered and performed (at additional charge): Thyroid AutoAbs Test Group performed at Esoterix Endocrinology Laboratory.
So it looks good because they include endo and all autoimmune they can think of. A very thorough blood draw. I wonder how much blood they need?
Any decent rheumatologist already ran these tests in their work up usually after a positive ANA as well and many gps regularly test for thyroid antibodies.
The point is that many don’t have access to a decent rheumatologist in UK. I was only “worked up” for Rheumatoid Factor and anti CCP when I first presented to GP and then to a rheumatologist in 2011.
My ANA wasn’t even tested until I’d been on Methotrexate for 2 years and full ENA panel was not checked until I’d been on DMARDs and steroids for 4 years.
By this time all blood results apart from inflammation, were normal, including the ones for APS. I’ve never been retested for APS since coming off steroids despite history of miscarriage and haematomas. Once off steroids my ANA was retested by a third NHS rheum and was 1:320. Similarly to many here on Lupus UK I have no choice about which rheumatologist I see or knowledge of what tests they have run. I have only found this out for myself through dogged perseverance.
I ordered my own Vitamin D test and Thyroid antibodies plus free T3&4 in 2013 having been refused these by my (mostly excellent) GP who said they are too expensive for the NHS to run routinely. I was living in the very far north of Scotland where MS stats are the highest in the world and was displaying very MS-like symptoms - now known to be part of my Sjögren’s.
The private testing confirmed that I have Hashimoto’s (I was already diagnosed and treated for hypothyroidism). But more importantly my vitamin D was found to be so low that a GP working for the private testing lab company actually phoned me to advise that I show these results to my GP. I did and have been prescribed AdCal D3 ever since. Apparently my calcium was at the very lowest end of normal too but he hadn’t bothered to tell me this. Most GPs don’t include FT3 and 4 or thyroid antibodies in the thyroid panel tests now. My vitamin D level was in the deficient range but is now middling end of normal range.
I have never again suffered from depression or polyarthritis since taking Adcal D3. So in my book this was money well spent on private testing - and not done out of primary anxiety. Like many people on these forums I had myself privately tested in the realisation that the NHS was and is increasingly on its knees. I have to be proactive and not assume my NHS doctors will have run these tests or have time or be committed to getting me well.
Uncertainty about horrible symptoms and cause of unwellness and medical ignorance about autoimmunity breeds anxiety in my experience. Private testing may be far from ideal but it does at least fill an increasingly large gap and can aid diagnosis and good self management. For me it has always been better to be investigated than not.
PS and I see that most if not all contributors here are from the US. But as this HU is hosted by a UK charity, I think it’s important to view private lab testing in a UK context rather than only an American one.
Hi Twitchytoes! I'm from the US and have been so terribly frustrated with my care. My 6 month follow-up would mostly show labs looking low-end normal. Thus, the reason rheumy's drop me.
It doesn't matter if I'm showing extreme inflammation in my elbows, wrists, fingers, neck. etc.
If my labs aren't flagging anything significant at a 6 month follow up...they're trained to go off numbers, percentages, and scores...I get dropped from their care.
That's why I too chose to advocate for my own labs. Once Avise sends them to my doctor and she sends them to me...I'll let you all know what I find out.
Have blessed Monday!
Hi Mimiof9. I use a huge international Sjögren’s FB community mainly comprising people in US and read lots of frustrated posts from those with normal bloods like yours. It’s inevitable that many of us in UK and USc are forced to go it alone with testing due to normal bloods but chronically debilitating symptoms. I would advocate for my own labs too if my doctors hadn’t already done so or if they refuse to repeat them in future. Best of luck! X
Hello, Jenny.
My Rheumatoligists ran an Avise panel on me, and didn’t even ask. It was run right along with the more conventional labs. The Hospital for Special Surgery in NYC, one of the leading centers for APS, in fact, ran it. I can’t think of a better endorsement than the Lockshin/ Erkan team.
It was not a patient driven test by ANY means, at least not at that time. This was two and a half years ago. It’s certainly not a private institution!
Its a teaching hospital associated with Cornell University. Ezra Cornell was a revolutionary thinker in his day, advocating for the education of vocations that would propel America towards production. He would found a university where any person of any race, gender, or means could get an education. ( paraphrased.) This was the first of its kind. ( I’m incredibly proud of Cornell. It’s dear to me for this very reason. )
My APS specialty neurologist in San Antonio who works with Professor Khamastra has published in cited works with him says the phosphatidylserines ( tested for in the Avise Panel) should be lumped in in the group of aps antibodies as prothmbotic. It’s just a grouping of them. ( I’m positive to the “ traditional “ antibodies, and transiently positive to one of the ,” additional “ ones in Avise panel.
Another APS Rheumatoligist Consultant in San Antonio, also has the Avise panel on hand in his office and drew for it. Never asked me. It was just part of the orders. He explain it as ,” an extended lupus panel.” Yes, it was positive.
“ It gives me a more complete, and comprehensive understanding of your clotting risk” he said. How often are these antibodies positive? At what levels? “ This echos what the other doctors said. It’s just knowledge.
My son’s pediatric Rheumatoligist ran one on him 6 months ago. Again, it was part of the standard blood order. My son is persistently positive to two in the Avise panel.
For an APS patient, it’s about clotting risks. It’s nothing to do with send out kits! Never have I experienced this. As I said, these were orders and drawn for in the office right along with all the other labs.
Do you know why they ran the test? It sounds like it does give additional information. HSS is a private hospital, I believe, loosely affiliated with Cornell. Maybe this test test could help diagnose early lupus.
Quest, in America, previously only did physician ordered script tests but recently now offers order your own, so this company maybe use to work similarity before trying to drum up more business with patient directed or suggested testing. The same assays offered above can be done at any lab with doctor orders and most doctors order them on their own not at the patients suggestion. I had every one of those listed tests in the hospital investigating my stroke. My hemotologist retested them too after 12 weeks. But many, especially the criteria APS antibodies and phosphatidylesine should only be tested after pregnancy issues or a clot.
Sadly, more and more labs are now trying to make more money targeting people searching desperately to feel better. Test ordering, Doctor shopping and too much research are key warning signs doctors look for before judging that extreme health anxiety may be present and this can hinder the care they give.( This is not a judgement on others for I have health anxiety, I actually think it caused the life long inflamation that caused my now positive antibodies and thus my now real disease. )The testing labs know this but still try to lure anxious undiagnosed patients to spend more money on tests that most likely were already run and if they were not run there is a reason it was not, like testing the for antibodies that are non diagnostic with out clinical symptoms.
Second opinions, assessing your condition without obsessing and making informed doctor directed decisions are great but self directing tests and self diagnosis is a slippery slope. Self testing availability was not started by patient advocates it is capitalistic pure and simple. It was lobbied for by labcorp and another now in jeopardy of safety violations lab in 2016 not by patients' rights groups.
It looks like the Avise test includes CB/CAPs. I have no idea what these actually are but they seem to be valuable biomarkers in lupus. The Avise test seems particularly helpful in difficult to diagnose patients. Good your doctor is open to the additional testing.
K
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