Three 'mild' positive Anti DsDNA tests, negative ANA, low C4.. Literally losing my hair!

[jp83]

Hi all, I've posted previously regarding my two positive DsDNA tests, but with negative ANA tests. I was informed by the nurse at Guys that the bloods are likely a bit of a fluke or an issue with the lab, because typically they would see a positive ANA with Lupus not just DsDNA and I'd probably be referred back to my GP.

I had more bloods taken by my nephroligist recently and incidentally they have also shown mild positive DsDNA, negative ANA and a slightly low C4. So it's not the lab...it's got to be a true result...but of what?! Have I got lupus?!...

I've noticed my hair is becoming patchy where I have the scaly scalp and I got upset over this yesterday...along with other issues these things are becoming really stressful for me and it's getting me down.

I see Dr Sangle in replacement of prof Khamashta next week, I've emailed the nurse my previous history and recent letter about my bloods from nephrology and am awaiting a reply, I hope she can relay this to the Dr and that he doesnt refer me back to my GP...

Does anyone else think this is suggestive of lupus?!.... Im so sick of all this lack of clarity on blood tests....it's very hard to get a diagnosis.

Does anyone have any input on this?

[misty14]

Hi Jp83

So sorry to read of your problems. These illnesses can produce all sorts of interesting blood results and as your pattern has been reproduced twice now it can't be a flu key result!. Your at a good hospital who should be able to help you specially as you now have scalp problems!. I do wish nurses wouldn't take it upon themselves to tell patients what will happen. The nurse dealing with you can't second guess what the Consultant might say / do. I know they're trying to be helpful but for you it's just added to your worries. Good for you for emailing the first blood results to her. Have a copy to hand when you see the Consultant. Best of luck for it. X

[jp83 in reply to misty14]

Thank you misty, I have to say the nurse was trying to be helpful in trying to fathom out if a long journey down to see the consultant would be a waste if the Dr wasn't planning on treating me...so it was partly myself pushing for a bit of an answer as it seems such a waste of money to travel if there's no treatment or bloods to be taken.. But this was before I'd received the letter from nephrology detailing another positive test. However I still have no reply from my email I sent last week.

I've noticed more hair loss on the other side of my head and round the back... I really hope they treat me.

I hope Dr Sangle will be as good as Prof Khamashta as Im almost certain he would treat this.

[misty14 in reply to jp83]

Hi JP83

I would have thought that Dr Sangle would be prepared to treat you. It depends on whether he has an open mind or not and he should have working at Guys!. If you don't get what you need, you could ask about a dermatology referral as your scalp is worsening. I'm sorry you have had to travel a long way for help, how far?. It's rude you haven't had a reply to your email. Good luck for next week, let us know how it went. X

[watercolour]

I am in the same boat! Sick of it all and not being taken seriously. My ANA was slightly positive but they said it wasn't enough for Lupus! These blood tests are a real pain. Why have a boundary of positivity if when it is over the marker, they still don't take it on board. I wish you well, great that you're with a good hospital x keep strong x

[jp83 in reply to watercolour]

Exactly! Why have those titres to measure against if they aren't really taken on board ?!

Hopefully Dr Sangle will listen and take some form of action or monitoring x

[winterbaby07]

Same here!!! I'm actually having actual active lupus flares but my Ana was negative but DSDNA was slightly positive... I've had pleurisy , malar rash, swollen joints, I've been dx with FM and I've even had a slight fever for days, and mouth sores, excessive unexplained weight loss, and it only responds to heavy heavy doses of steroids!!!! I'm talking 40mg daily of Pred since my GP is so frustrated that's all she can prescribe since I have no dx YET!!!! Still fighting for diagnosis !! This is thee most cruel deceptive disease I know!!!! STAY STRONG, live your life as a LUPUS SURVIVOR!!! Only you know your body , you are not crazy , it's not in your mind, it's not depression it's LUPUS!!!! I too thought I was losing my mind... I'm working on my 3rd opinion!!! Sending happy thoughts your way

[watercolour in reply to winterbaby07]

Thx for your post.... Not being believed is the worst label for anyone! Glad youre on the steroids... They won't give me mine as I am not diagnosed yet having shocking lupus flares. it's just awful with no steroids as the flare is continual. Take care xxxx

[Lucieb01]

My new rummie told me my ANA was high but did not want to label it as lupus his words so labeled it UCTD due to my many symptons (now i have a sort of result) after 3 long yrs as my mum and her sister had lupus i now know it is not all in my head as that is the way the first rummie made me feel.

[SForbes]

I also have two positive Anti-dsdna and negative ANA with hair loss in the center and small amount in the sides. I was told I have the auto immune disease Central Centrifugal Cicatricial Alopecia (CCCA).

[driven]

Hi JP

I think, from what I have read, that some people can consistently be ANA negative and anti dsDNA positive and have lupus I don't know if this will help but I find it useful to remember that the lines that the medical profession draw between tests and symptoms are what determines the label they put on things. Rheumatological conditions have a lot of overlap and a lot of patchiness with regard to symptoms. I dont really think they are properly seperate things. This tends to lead to some medics choosing to diagnose one thing one day and another labelling a condition as something else another. I think most of us find this infuriating.

However, i guess the important thing is finding medication and lifestyle choices that work for you regardless of the label. I hope you find a consultant who can help you do that. Good luck and stay positive if you can!