This is unacceptable. You don't have to get yourself sick to get treatment. Find another doctor! I never had high dsDNA, only CRP.
It happens when you have fever, or any other sign of inflammation, like swollen joints. For me I when I am flaring at night I can barely move, can't sleep, feel feverish, and my bowels or stomach gets affected too, like my body stops in pain.
Please don't quit in finding a good doctor! And you can always get away to Canada!

My tongue was so swollen that the ER doctor gave me shots of decadron and a @prednisone scripts and sent me immediately for allergy testing. My allergy tests came back negative all but for a slight allergy to cats yet I could hardly fit my tongue in my mouth. So they pulled out the big guns....40mgs of @prednisone and sent me to a rheumatologist. My aches and pains were better within about 3 days and I was finally peeing again. I was so thankful! Unfortunately my rheumy appointment and my blood tests were taken after about a week on this high dose. I’m surprised my ANA even came back positive considering! My CRP was raised at 7 but he doesn’t consider it evidence of Lupus inflammation unless it’s over 10 🙄 So here we are And yes, there are different tests available with different reference ranges. There’s a hsCRP test that is positive/abnormal over 1 and shows significant inflammation over 3. With the regular CRP, 3 is considered abnormal and 10 is considered a sign of Lupus-like inflammation according to my doctor

I'm surprised you were put on heavy doses of steroids before your doctor even would confirm a diagnosis. Was this based on symptoms or another health issue?

I was diagnosed with SLE and my CRP and DsDNA has always been in the normal/negative range (<0.03, <=200 so I think their clinical range is different from yours). I also don't get a butterfly rash. Every doctor's different, but if you're feeling like crap and have a stubborn doctor, find someone who'll listen and explore while you still have coverage!

My rheumatologist does not treat or diagnose based on symptoms. He is very clinical and wants certain to see positive dsDNA or evidence of inflammation in lab work. My low platelets, anemia, and characteristic symptoms are not enough for him to either diagnose or treat. I’m left in terrible discomfort til I can catch an elevated dsDNA or CRP 😔

I saw another rheumy, she too won’t treat based on symptoms or positive ANA. She wants a biopsy of a butterfly rash (which I don’t get) or the dsDNA.

I wish I never got treated with such strong steroids in Jan. It knocked back all my levels and ruined my chance of getting the evidence I needed for diagnosis

The clock is ticking. With Obamacare being gutted I won’t have insurance next year. If we don’t figure out what is wrong and start treatment before 2019 I’ll never be diagnosed.

If anyone has any idea of what symptoms usually coincide with raised dsDNA or higher CRP please do share!

I hear you,the Drs can go by how many symptoms you have too. I had the same,I looked like a nut case saying I had these symptoms, gone now. He said they do not know what to do. Early stages.But wait I guess when bad enough to them,the drs may react,such a waiting game I know.I will take pictures of sores and swelling bring them what they cannot see is internal swelling. I dont care about been diagnosed anymore I am what I am ,Dr fix it when it breaks down,tell me what to do for issues. Most of Dr are at a loss.A guessing game.researched on own.
I had severe migraine in Jan and lingered till end of April and now gone.CT head will it show anything? Probably not.What a waist of time.oh I pray there will be answers for you.hugs