[hardcandy]

Hi! My anti-dsdna has always been negative, but it's now rising into the borderline/indeterminate range. Is this something to be concerned about? Does such a result have any meaning, or should I not stress or worry unless something is positive?

Thanks in advance!

 

[Clare.T]

Hello HardCandy

I certainly wouldn't stress or even worry about it, just keep it in mind and get a urine test done. Are you still in this diagnostic/medical care predicament and were these tests ordered by a doctor who will presumably be checking them out? If they are part of routine check up then a urine test would normally be done as part of a regular check up. Normally the check ups are in connection with seeing the doctor who will ask how you are and decide the significance of any new test results

If you are having an increase in symptoms then maybe the disease is becoming more active, but it could be a short lived thing.

Another way of looking at it, is that if the anti ds DNA does become abnormally high that will certainly confirm your lupus diagnosis.
Otherwise the disease is the symptoms and what the patient reports as symptoms plus other lab results which is not necessarily reflected in the classic blood work.

All the best
Clare

 

[hardcandy]

Thanks, Clare! I'll be sure to have a urine test done asap, since I haven't had one in almost a year, due to an irregular cycle. Since you mentioned it, though - no one has asked! No one has followed up once I tell them that I haven't had one.

I'm still working with the whole "now un-diagnosed" (unless you ask my LA doc) thing, and am trying to focus on what I can do, and remember that a dx is just a name. Still, it hurts my feelings to have a doctor say "pain" and then literally point at his head, especially after I express my fears that everyone thinks it's all in my head!

I don't want organ involvement - I just want to work with a doctor who believes what I'm experiencing.

The first new doc I found here, who suggested I was bipolar and had no connective tissue disease, said to cut the plaquenil dose in half. I was tempted to stop it all together and lie out in the sun! Thank god I didn't - my symptoms became much worse, and I went back up to 400. I wonder whether the month or two at 200 mg contributed to the dsdna results? My ANA was negative for the first time ever, before I cut down the plaquenil, but that's no longer the case...

My current symptoms probably wouldn't warrant steroids or anything stronger, so it's time for me to work on getting myself healthy and exploring alternative therapies.

Thanks again for your response! Is dsdna something that just suddenly shoots up for people? Is there an average length of time before that happens? A lot of people never have a positive result, right? And it doesn't always mean kidney involvement?

I'd like to take a break from pursuing doctors, but I still have more appointments to line up! It gets old...

 

[Joandublin]

Hi Hardcandy

I just wanted to reassure you about the anti dsdna. When I first presented to a Rheumatologist I had high anti dsdna antibodies. They were 77 at the time. Two months later they were 140+ and two months further on they were 200+. That was about three and a half years ago.

Since then between Plaquenil and prednisone they have steadily come down from the 'HighHigh!!' range to just normal 'High!' (Thats how my lab results present the information - including the exclamation marks for effect)

Anyway during all this time I have never had any evidence of kidney involvement but I always make sure I get my urine tested each time I am at the Rheumatologist. My GP has also, on occasion, just sent off a urine sample for detailed analysis just to be on the safe side.

I also have home testing sticks which can be handy if you are a bit anxious. When I first got them I thought I would be using them every week but to be honest, the anxiety lessened considerably and now I rarely use them as I feel I have enough monitoring.

Bringing along a urine sample to your PCP each time is good practice. Its simple enough to dip and check for anything untoward. Its probably the easiest test one can do. While there is evidence that anti dsdna antibodies are linked to a greater chance of kidney involvement it isnt always the case. Even if it is, once its caught early, treatment is extremely successful and reverses the situation. Keep an eye out for other symptoms as well such as swollen ankles and if that becomes a problem, make sure you get your urine checked.

Hope this helps and the very best of luck with lining up those appointments!

Take care
Joan:rose:

 

[Raglet]

it is normal for antibodies to fluctuate, this is just the way that the imune system operates. So, time will tell whether this is part of an overall upward trend, or if this is just the normal fluctuation that can be expected in any individual, whether or not they have lupus.

so, this is the sort of magic ball stuff that there just isn't an answer to beyond time will tell.

hth

raglet

 

[hardcandy]

Thanks, everyone!

 

[hardcandy]

This is funny – I just googled about indeterminate anti-dsDNA, and came to this post and was reading along I was like oh that’s helpful, and after the mention of the doctor in LA, I realize it was a question I had asked years before! It was originally me asking the question!

I can confirm, for others reading this or concerned about the fluctuation of antibodies, that I had my ANA test in three weeks apart, with one being 1280 and one being negative. Within three weeks of each other.

So, if you are ANA-negative, don’t let that make you think that your symptoms or your illness is all in your head or that you don’t really have a disease – it’s totally possible that they didn’t catch that positive ANA that they want so badly because they just didn’t test during the right week, or who knows, even the right day! I wonder if such fluctuations are common when you don’t have, as far as you know, organ involvement, or you are considered to have undifferentiated disease, etc. my complement levels – the C3 and C4 - those move slowly and consistently over time ( is there slowly going down over many months or year, or slowly going up) reflecting plaquenil dosage and also disease activity. But yeah, the ANA - I have no idea when or why it’s going to turn out positive or negative.

I haven’t had any borderline anti-dsDNA, nor positive, results since that one time - it could be 10 years ago now!

I googled this question today because I will be seeing a new rheumatologist in August I want to have all of my
“proof“ and my full history in front of me. I’m also filling out paperwork for continuing disability coverage, which really scared me and has overwhelmed me for weeks now! They are such simple questions but to answer them, like, “Which medications are you currently taken and/or have taken in the past year?” Which doctors have I seen, please list all tests and health issues... I printed out several copies of the page where they give you extra room, because I’m going to need about seven extra pages!

Anyway, thanks again, Clare, for your help with this so many years ago and even still today!

 

[lazylegs]

Good luck with your disability claim. It might help to have someone close to you help out. My husband thought of more things I could no longer do. I didn't even think of them as I had learned to adapt in other ways. My old calendars were invaluable also. I had forgotten about a few tests the doctors had run. Certain claims trigger a visit to one of their doctors. In my case it was to my benefit as her report held a lot of weight.

Take care,
Lazylegs