ANA

[Conniesmum]

Has anyone got any experience with non ANA lupus? I am very new to this.

[eekt]

Hi Conniesmum! Welcome aboard! The traditional ways of coming to a SLE diagnosis exclude ANA, meaning even longer delays in finding a label for the symptoms, HOWEVER the American College of Rheumatology is TODAY looking at a different approach:

healthunlocked.com/lupusuk/...

The treatments are pretty much the same whatever the label (MCTD/UTCD/SLE/and many other autoimmune diseases): having appropriate medication is more important.

There's great info on the Lupus UK website, and you can order an info pack.

Plenty folks here are dog-paddling in a sea of medical confusion, because some medics aren't aware the negative ANA doesn't mean it's not lupus etc etc...hopefully you'll have some replies from some in the same boat.

If you add a little more about symptoms and bloods, there are members with huge personal and professional experience of being on the outside of the usual SLE criteria that can help.

Keep posting and let us know how you go! Be well! xxx

[KayHimm in reply to eekt]

A lupus and APS specialist attempts to answer a patient’s question regarding ANA lupus. I think it is the best explanation I have seen. Google search: ANA negative lupus, Michael Lockshin if you are interested. I wish I knew how to put the article on the HU forum. He does emphasize, as you state, that the treatment is the same. Nonetheless, it is very complicated!

[eekt in reply to KayHimm]

A paper at the ACR Annual Meeting yesterday suggested the inclusion of ANA-negativity in the proposed new ACR/EULAR SLE criteria! Though the jury's still out! xxx

You can just c&p links in to this wonderful forum!

verywellhealth.com/ana-nega...

[KayHimm in reply to eekt]

Thanks!

[imsickandtired]

I have ANA negative lupus. Consequently it took years to be diagnosed. Then, anytime I had to deal with a new doctor, they would question my diagnosis and start testing all over again only to come to the conclusion (again) that I have lupus. I have ALL the symptoms of lupus except the positive ANA. I now have a set of doctors that except that diagnosis and it has made a world of difference in both my treatment and my peace of mind. I did learn to fight for myself. You are your own best advocate.

[Fennella02 in reply to imsickandtired]

Same here only I was diagnosed at my first appt such was the strength of my presentation. I also dread seeing new or locum doctors although my dx has been officially confirmed by a lupus professor. Someone always thinks that they know better . . .

[DJK99]

Hi there - I have been diagnosed with SLE but am ANA negative. Had the symptoms all my life but was taught by parents to ignore health matters and not to go to doctors.. until it was absolutely necessary for them, and me! Read my posts if you like. Or I'm happy to answer any questions. Recent post by eekt regarding new info and her one to you are brilliant. You don't say whether you are ANA neg Lupus, are you? D