dsDNA

[Boudica1]

Can anyone tell me how high the dsDNA has to be for Lupus diagnosis as I had a low positive?

[eekt]

Hi Boudica1, outside the normal lab range usually points to SLE. There are various ways of testing so the actual numbers don't mean much. There's usually a commentary that comes with the result so medics can understand: for dsDNA it will say something along the lines of 'highly suggestive of SLE'....but the test is just a part of the picture and a rheumatologist will look for 4 from 11 categories before concluding SLE. Lupus UK has excellent info sheets on the tests....it's all a bit of a pea-souper as you'll see from posts ( and I remember from your ANCA dilemma), the best thing to aim for is to have medication that reduces symptoms rather than a label, because sure as fate, that label is going to move on xxx

[Wendy39]

Hello. Diagnosis is so frustrating and confusing. I have never had.a positive dsDNA. I was diagnosed in 2013 with SCLE but I had to go to London Bridge Lupus Clinic in 2017 to get the right diagnosis of SLE. Everyone is so different. Part of my diagnosis was a skin biopsy. Some people never have positive bloods and are diagnosed on symptoms alone. It depends a lot on who you see. I’m happy to answer further questions if you feel able to share more details of your symptoms and situation . Best wishes. Wendy

[Boudica1]

I also have a low positive for RF, Amylase, CCP. C3&C4 are tending to go up and down along with CRP, the last one can go way over but the ESR fluctuations between 4 and 7 so normal. Neutrophils can go way over but the others can drop almost under. Along with that lot the red cells hd, MCH and MCHC are way over and sometimes mcv goes well over. Any ideas? Oh almost forgot the tsh is heading to the lower end.

The strong steroid cream for the rash I'm still not sure of as they wax and wane along with the other symptoms.

X

[Wendy39 in reply to Boudica1]

OK. Which area do you live in? Are you near a Centre of Excellence? Do you have faith that your doctors are doing everything they can to help you get a diagnosis? Like I said, I was getting nowhere fast locally with my diagnosis and ended up paying privately. And lots of people end up doing this, out of desperation. You've had some other replies now as well. We do all understand here. That's why we are all here, trying to help each other. I hope some of the tests you are having help you get a diagnosis and treatment very soon.

[KayHimm]

Only a doctor could tell you that. Diagnosis involves both lab values and symptoms. Although it may seem arbitrary, rheumatologists are skilled at arriving at a diagnosis. Sometimes in the early stages of disease it just isn’t possible. Testing is very good now. They do not like to diagnose lupus without a positive ANA and certain specific antibodies. It looks like the new criteria will include ANA negative lupus if there is a positive kidney biopsy. There are various shades of autoimmune disease. The best thing to do is ask your doctor how they arrived at the diagnosis. He should be able to tell you his reasoning just as he would another doctor. Although some patients have negative blood tests, this is down to two percent. Lupus is a multi-system disease that, by definition, produces auto-antibodies. In rare individuals they are negative — early disease, cross-reacting antibodies, and treatment. But doctors can sort through all of this. Remember that everything is not lupus. There are many different of autoimmune diseases. Maybe they could start you on medication for symptoms if they suspect your symptoms stem from autoimmune disease.

[Boudica1 in reply to KayHimm]

I understand that things can be difficult to diagnose. The symptoms are at times driving me nuts like the pain in the kidney area and blood in per but scans show no stones, lumps or bumps and the bloods for that are apparently normal so they will not check this out. Abdominal swelling and severe pain at times is unbelievable as are the pains in my feet. The general aches and sudden tiredness as if I've hit some imaginary wall I have started to get used to, although when you are suddenly overtaken by a 90+ year old with a Zimmer frame was a bit of a shock to say the least. I can even just about put up with suddenly feeling so hot I need to strip off but can't put cold water on me as it feels like having electrodes going through me.

Now I have to have 2 more biopsies a bigger one ( slice this time) of the rash and another from the lip.

I just want all these tests to stop as it's starting to feel as if there is more of me in the labs then there is on me and they still won't or can't tell me why or what they are looking for.

Rant over. Sorry. X

[KayHimm in reply to Boudica1]

It sounds like you are still undergoing a lot of testing. It is a hard time and so frustrating. There is no way to rush a diagnosis, though. There are many things they are looking at and ruling out. It does sound like you are really suffering. Are you going to see the rheumatologist privately? I believe you were considering that. Hoping you will get answers soon.

[KayHimm in reply to Boudica1]

I looked over your previous posts. Just a guess but they seem suspicious of an autoimmune process. They are aggressively trying to pin it down. They are getting tissue from your rash and lip. They are listening to you but every symptom will not have a cause. But they are watching closely. Don’t get caught up in the complicated antibody stuff. Unfortunately, you are not behaving like a text book. That is why you have to have these additional tests. I am really sorry. It’s not your fault! Hang in there. Message me if you have any specific questions.

[Boudica1 in reply to KayHimm]

Thanks for your response and support, just getting to the end of my tether at the moment and feel like giving up and letting nature take its course. Trouble is I don't like feeling like my body has gone out of control. Thanks for your kind and patient response.