This is a great video by the RA Warrior, she explains in a nutshell what it means to have RD.
Interestingly, she managed to get it sponsored by manufacturers of a home testing kit in USA - I wonder how accurate a home kit can be, considering there is no single test that gives a definite positive/negative result.
It seems that this home test if for Rheumatoid Factor and Anti-CCP, so the two main indicators. Doesn't say how accurate they are compared to lab tests tho'.
But seems a bit pointless to me, as a doctor is unlikely to diagnose on blood tests alone, as needs symptoms too. And if you have symptoms then you should go to your doctor and get properly assessed - the doctor would repeat the blood tests anyway. As they say, you can be positive years before you get any symptoms, in which case you are unlikely to get any treatments......so what do you do while you wait apart from worry?
Our chemists now has lots of home testing kits. Some seem sensible things, like being able to keep track of your cholesterol. But other tests, like this one, do run the risk of enhancing people's fears and making people with health anxiety get worse.
I guess in America, where every single test has to be paid for (how lucky we are to have the NHS) there would be a market for this so that one could get a sense, early on, of whether it was worth investing in a battery of other expensive tests in order to get a diagnosis.
She’s great isn’t she; had so much info off her site when first diagnosed. Thanks for posting ☺️ x
PS I don’t have a problem with self test as common themes on here seem to be time spent getting an accurate diagnosis & how important early treatment is; thought anti ccp was 97% accurate anyway? You’re not likely to self test unless you suspect symptoms I guess. Is it only available stateside at mo?
She's great, and good that she can get commercial sponsorship to support her site. So nothing against her, and the US is a different world so maybe self tests more useful.
Yes, when done in a lab if you come out as positive then that's 97% specific for RA. What's unknown from their ads is whether doing it at home gives an accurate result?
A lot of the people who struggle with getting diagnosed are sero-negative, so this wouldn't help. I can see it's could be useful in some circumstances, but I'm cynical and see that it's more about boostimg company profits than helping people struggling to get a diagnosis.
Fair enough, understand what you’re saying. I think rheumatologists involved in its development; just read her email & attachments. Interestingly she added one on seronegative patients, hope link works (bet you’ve already seen it 😉)
rawarrior.com/seronegative-...
I’m interested as family member having trouble getting diagnosis and suspect I had it a while before it showed in bloods too.
There was also really interesting Dutch research on early rituximab infusions helping to slow disease in patients caught early enough; i’ll try & post that separately as waffled on enough here. She did show her daughter, an immunologist, taking test so would imagine her motivation is getting people diagnosed at early enough stage to prevent damage/ aggressive RD like hers but get what you’re saying about pharma. It’s all such an unknown & anything new about it fascinates me x
Now if GPs were given this test and had it in their surgeries, so could check patients instantly and fast track anyone who tested positive then I'd feel differently. What I have a problem with is the whole issue of the state provided healthcare being allowed to get so rubbish that you replace it by paying for things yourself.....which of course encourages the state provision to get even worse.
Bit even with a high anti-CCP surely no doctor would give you anything - let alone rituximab - unless you had symptoms as well?
Totally understand, and with you on increasing privatisation of nhs, just posted the rest on ‘pre-clinical’ RA & link (there are critical replies to her as well, along same lines as you 😉) but wouldn’t it be great in future if they could diagnose/treat early enough to prevent damage or even disease progression? I just found it all really interesting is all; I know it can run in families & worry about mine.
Early days I know but for me it was a bit more hopeful than all the doom & gloom. Obviously that’s all in US not here & would be great if GPs were more aware in general as reliance on severe clinical symptoms can mean diagnosis takes some time.
Separate issue but she highlights ‘arthritis’ word again too. If nothing else I’m grateful for her promotion of it as a serious auto immune disease & that as just one symptom not an all encompassing label.
Thank you for posting this.
Need some reassurance pls
First Video Rheumy Appointment on Monday
ESA video Assessment
You're all brilliant! Thank you x
