Advice on getting the right blood tests....

[Jules_Essex]

Hi all - I've been treated with plaquenil since January for suspected sjogren's syndrome/lupus but I'm antibody negative on all blood tests done so far (and as far as I knew I thought I'd had everything known to man!!) I do have autoimmune thyroid issues (hashimotos) and lichen planus which is also autoimmune so I do have a strong autoimmune background.

The consultant has written to the GP and asked them to recheck the following things in view of a worsening malar rash.........

- antinuclear antibody (I know I've had this several times and it's always negative)

- DNA and ENA antibody status

I know I've had ENA checked and that was negative but I'm sure I've never had DNA antibodies tested before..............

I've basically phoned my surgery and asked one of the GP's to read the letter and leave a blood test form for me at reception so I can go and get everything done. My regular GP has left and anyone half decent appears to be on holiday for the next month so I just want to check what I should be looking for on the blood test form in terms of DNA antibodies as I've not come across these before and I wouldn't be surprised if the GP hasn't either!!

Interestingly in the consultant's letter he's put 'There are no new symptoms apart from perhaps the development of a more prominent malar rash. This was evident today but could be due to a mild form of rosacea'.

I must admit if he doesn't know if it's a lupus malar rash or rosacea how am I supposed to?!!! I'm starting to feel quite self conscious about the malar rash as even when I cover myself in make up you can still see it quite clearly

[paula1969]

Hi Jules i am the same as you lichen planus been on methotrexate near 3 years ana negative and not had dna even though i have blood test every 6-8 weeks. Gp said lupus 4 years ago when symtems started but did 3 skin biopsies and then changed to lichen planus. I have had butterfly rash since day 1 and i have alot of lupus symtems actually off work at mo due to sever pain and exhaustion im struggling pretty bad at mo had xray and scan for osteoporosis still waiting on results but im going to call consultant monday and push for answes and rheumatologist i carnt suffer like this any longer. Your not on your own its hard to get answers and results.

[Cann]

Doctors just don't know and even those that think they know often don't from my experience. There are more and more difficult symptoms appearing for so many people these days and I am sure it is due to being subjected to so much toxicity in the environment, an unnatural life and stress, of course, which makes it all worse.

[tennissenior]

Dear Jules,

You should be thanking G-d for having so many negative tests. Most of us would say it's a blessing. The rash might just be rosacea. I have a friend whose boyfriend gets it as well a smy husband. He uses a Clinique product that seems to work. Thyroid can have many faces as well. I have that too, and when my numbers start to rise, all kinds of symptoms pop up. I have been positive for more than 4 years on every test you mentioned, and more. If it's just a rash you are concerned about.....that can be addressed. Thyroid can be as well. If you fine your TSH has risen or dropped, my PCP normally will check it again in 3-4 weeks. Perhaps you need an adjustment in dosage. The Discoid Lupus rash would be across your cheeks and bridge of your nose. There are meds to treat that.

[Bebe76]

I find this website very useful: lupus.org/answers/entry/lup... ANA and anti-dsDNA are the main test, but there are others like anti-Ro and anti-La that might point to other automune conditions such as Sjogrens'. Good luck, hope you find some answers.

[Paul_Howard Partner LUPUS UK]

Hi Jules_Essex,

anti-DNA antibodies are an important diagnostic criteria for lupus as they are highly specific to that condition and rarely found in people that don't have lupus.

If you would like more information about the diagnosis of lupus, you can download or request a copy of our free information pack at lupusuk.org.uk/want-to-know...

[Jules_Essex]

Thanks for the replies I've picked up my blood test form from the GP this morning and am off for my blood test this afternoon.

I'm still not sure that they've asked for anti-DNA antibodies to be tested though and wondered if anyone could confirm either way from what's been written on the blood test.

So they've ticked the box for:

RA test (which I think is rheumatoid arthritis?

ANA (which I think is anti nuclear antibodies

They've also written in the 'other' box 'ENA screen please'

In the Clinical details box they've written:

Connective tissue disorder

Malar rash

Specialist request

I'm not convinced that they've asked for anti-DNA antibodies but does anyone else know?