I had a connective tissue disease blood screen result 0.1 ratio (0.0-1.0). Does anyone know what is actually tested eg antinuclear antibody?

Lupus, connective tissue disease

[Spanielmadlady]

ANA antibodies tests for autoimmune conditions like lupus and rheumatoid arthritis

[Hidden in reply to Spanielmadlady]

Thanks for your reply. On my results it just says connective tissue disease screen so I don’t know what they screen for in this test. Do you know if ANA antibodies is included?

My GP says as the test is normal I don’t have Lupus or connective tissue disease and that the sun doesn’t agree with everyone!

My symptoms are itchy rash on exposed skin then I start feeling tired, achy and get enlarged glands in my neck and behind just one ear for a few days.

Also a have a round raised patch of skin on my forehead.

[Spanielmadlady in reply to Hidden]

I think it does as well as immungloblins ds- dna and compliments.dont be fobbed off just because you have normal or negative bloods doesnt mean you dont lupus.gps seem quite ignorant with regards to lupus so I'd ask to be referred to rheumatology

[Hidden in reply to Spanielmadlady]

Ok will do thanks.

[Spanielmadlady in reply to Hidden]

Another point ....it can take years to get a diagnosis of lupus...5 years in my case so its another reason not to be fobbed off.ive been ill since 2013 but my bloods didnt go positive for DS-DNA and ANA until 2016.they are now negative.you need a rheumatologist who will look at you as a whole and as an individual not as a set of numbers on a computer screen from the path lab xx

[Hidden in reply to Spanielmadlady]

Yes I didn’t even get to see my GP, was only a telephone consultation so to him I was just a set of results and in his words “an unusual set of symptoms”. I don’t want to wait years for a diagnosis because I’ve just spent years going through a tough menopause but thats another story. Was just beginning to feel better then I get this problem.

Even with covering up, wearing a hat and sunscreen when I go out, I still feel itchy afterwards and then feel unwell. Do you have any recommendations that helps you?

I’m a keen gardener and also have a Spaniel that I like to go on long walks with and hopefully getting another dog in a couple of months, so I’m a bit concerned that I might have to stay indoors when the sun is shining. That was the only time recently that I stopped itching was when I stayed in for 4 days but I got stir crazy 🤪

Thanks for your help xx

[Spanielmadlady in reply to Hidden]

I have 2 spaniels who are seniors(11 &10) but still love to be out.i have some uv sensitivity and get a headache if I dont wear my factor 50 hat.i have reaction lens in my glasses and wear maxi dresses with a cropped cardigan and factor 50 sun cream.dedpite all that my joints mainly my hands and feet ache and I feel exhausted.after a few days indoors it all eases.i invested in a gazebo so I can still enjoy some time outdoors as I face south so theres not much shade.i take pregabalin so all I can take extra to ease my joints is paracetamol.if I do go into itch mode a chlorophenamine tablet (piriton) usually does the trick.

lupus is notoriously difficult to diagnosis that's part of the reason it takes so long and I think many live with it undiagnosed because they give up.patience is a virtue with lupus.i attend 3 different hospitals and the blood tests are endless I'm currently on monthly bloods ( despite covid ) but have been on weekly bloods on the past.

Lockdown has been a breeze for me as I'm used to staying in especially in the winter as I hibernate from oct to april to avoid the cold and flu season. Kind regards xx

[Hidden in reply to Spanielmadlady]

Sorry forget to mention I also get swollen knuckle joints

[Spanielmadlady in reply to Hidden]

The other thing I would suggest is educate yourself

[Hidden in reply to Spanielmadlady]

Sounds like its a bit trial and error and finding what works for you

[Spanielmadlady in reply to Hidden]

It is trying to find the drug combo that works for you.lupus drugs take months to start to work so if it doesn't work for you you are back to square one and 6 months have gone by.they tried my on azathioprine o managed 7 wks before I I started being sick.it had given me drug induced hepatitis.i then had to wait 3 months for my liver to recover before trying mycophenolate which then took 2 months to start to work.that took most of last year.