ACA & Anti CENP B : Hey all, Hope you are doing... - LUPUS UK

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ACA & Anti CENP B

Northerner1 profile image
7 Replies

Hey all,

Hope you are doing well - and a big thank you to those who took time to reply to my first post.

Follow on from my neurologist nightmare (where he dismissed my ANA result as insignificant and spurious & said males don’t get lupus) , I had my bloods redone and they came back ANA positive for a second time.

As a result I was able to see a brilliant rheumatologist who took the time to fully examine me and book me in for more specific bloods and a scan (due to some weakness in my back).

Rather than dismissing the positive ANA results, the rheumatologist said it did indicate an issue - which was a relief as I thought I was going mad! He also noted a slight malar rash on my face (which the neurologist said wasn’t there despite not asking me to remove my mask!!)

He had booked in further bloods to drill down into the specifics - and I’m back there in three weeks to discuss - but his report has come through today and has stated that anti centromere antibody was positive 4.5 & 4.7, and anti CENP B antibody positive.

Does anyone know what the numbers stand for? Tried looking online and can’t find anything. Also I’m not sure what the anti CENP B antibody means?

Any help or thoughts greatly appreciated…

Thanks all & stay safe!

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KayHimm profile image
KayHimm

Those are specific auto-antibodies that the rheumatologist will take into account along with your other signs and symptoms.

It sounds like you had a fruitful appointment. When is your follow up?

nanleighh profile image
nanleighh

Hi Northerner, all the symptoms you mentioned in your last post are indicative of Lupus. The positive ANA certainly is. That doctor was certainly ignorant for telling you men don’t get Lupus. That being said the anti centomere antibody is more commonly associated with scleroderma. A lot of these AI diseases overlap symptoms and some people have more than one. Having been a nurse for over 40 years in my opinion, John’s Hopkins and Mayo Clinic have some of the best and most accurate information on their websites. The Cleveland clinic is another. The rheumatologist would be the one to diagnose, however, you may get useful information from these sites. It is recommended you keep a diary of any symptoms and photos of any rashes. I wish you good luck in your journey. I know none of us wants any of these maladies but like you said finding what’s wrong makes you feel you weren’t going crazy after all. You take good care. XNan

Northerner1 profile image
Northerner1

Thanks both… KayHimm I’m back in three weeks as one of the blood tests requested takes a couple of weeks to come back.nanleighh the doctor did mention scleroderma but although the some of the symptoms fit, there’s no rash (other than the faint malar rash), hardening/tightening of the skin or white/blue fingers. Keeping a diary is a great shout (and I’ll have read of those sites) so thank you for your recommendations

Ingrid1234 profile image
Ingrid1234

Wiki gives a good scientific summary plus lab tests for these autoantibodies which indicate scleroderma:

en.wikipedia.org/wiki/Anti-...

Eg,

“…Anti-centromere antibodies (ACAs; often styled solid, anticentromere) are autoantibodies specific to centromere and kinetochore function. They occur in some autoimmune diseases, frequently in limited systemic scleroderma (formerly called CREST syndrome), and occasionally in the diffuse form of scleroderma. They are rare in other rheumatic conditions and in healthy persons.

Anti-centromere antibodies are found in approximately 60% of patients with limited systemic scleroderma and in 15% of those with the diffuse form of scleroderma. The specificity of this test is >98%. Thus, a positive anti-centromere antibody finding is strongly suggestive of limited systemic scleroderma. Anti-centromere antibodies present early in the course of disease and are notably predictive of limited cutaneous involvement and …”. etc

Note that,

“…CREST syndrome, also known as the limited cutaneous form of systemic sclerosis (lcSSc), is a multisystem connective tissue disorder. The acronym "CREST" refers to the five main features: calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia...”

Trust this helps?🤔❓

Sorry no but I’m certain the forum will respond with the answer. I just wanted to say I’m glad you are getting some where with your medical care 😀

Tiggywoos profile image
Tiggywoos

So glad you’re getting somewhere !!! It gives people hope for you posting so thank you 🙏

Tiggywoos profile image
Tiggywoos

Thank you even 😉

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