All your results are normal, the only thing you have to remember is that only 60 to 80 percent of people with lupus have positive anti-DNA abs so it may not be as reliable of a test as others to indicate lupus.
I just asked my rhuemy last week when I saw him that if the anti-DNA tests in lupus are negative then it means I don't have lupus? He said what it means is that if it shows positive, then it's the more damaging lupus. It doesn't mean that a person wouldn't have lupus. He said my rash is a connective tissue disease and he is saying I have too many symptoms.
I have always had for 11 years from day 1 a positive ANA. It started out at 160 and over the years went up to 320 and last year was 640 but then stays at 320.
I've always had this rash that's always been the same from when I got sick.
I have raynauds but just as a second symptom due to the illness.
I can't be in the heat. The rash is 100% worse within 5 minutes of being outside. Last year I just started getting eye sensitivity where the sun bothers me. I have orthostatic intolerance and low blood volume.
I get the fevers over 100. I can't even think what else.
I can relate with almost all of your symptoms and I too can't even think of every symptom anymore and could probably type a whole novel full of them. I hope that your doctor will choose to treat you soon. It will make a lot of symptoms much more liveable. I hope you start to feel better soon
The biggest question that you would have to ask yourself is whether or not you feel your rheumy is a good, credible doctor. If not I would strongly suggest seeing a different rheumy for a second opinion. Again, I completely agree with Dr. Bell when he says tests don't lie. In my personal opinion I think the fact that the doctor won't treat you or even discuss treatment options sends up a red flag. If it is lupus it should be treated promptly and properly and monitored much more closely than just once a year. The fact that he's not treating it to me says that either a) he doesn't know much about lupus or b) he doesn't really think it's lupus. But I'm not a doctor this is all just my personal opinion. I would follow your gut instincts.
I really like this rheumy. I've been seeing him 4 years now and he is very thorough and answers all my questions and takes time with me. I was seeing another rheumy before him and that rheumy also believed I had lupus.
My rheumy said they don't usually treat unless you start having pain. Because the meds are very strong and I certainly don't want them.
I'm glad you like your rheumy, that's extremely important. It is true that most of the medicines are very strong, however there is a class of drug called an antimalarial. It is very mild, has virtually no side effects, and can properly manage the disease. I've never heard of a doctor who didn't want to treat lupus, mainly because before effective treatments were given for lupus the prognosis from the diagnosis date was about two years. Even if you decide not to treat, I think you should have your blood work monitored more often because many of the most devastating aspects of lupus don't always present with pain or even many symptoms. Not saying that anything like that will happen, but it's always good to be on the safe side for peace of mind
Postie, your dr. explained to you that NOT finding anti-ds-DNA or anti-Sm is a "good thing". Yes, it certainly is. But not finding ANY answers in four years doesn't strike me as a "good thing".
My local drs. doubtless focused too much on anti-ds-DNA. The joke (?) was that I was eventually Dx'ed with *Ro-lupus*, a tiny subgroup that probably accounts for only several percent of people with the disease, i.e., a variant they'd probably never considered & quite possibly had never heard of.
So... have you looked at your bloodwork, to see exactly WHICH autoantibodies your dr. tests for? i.e., how wide a net is he casting?
For example, (1) Is he checking anti-RNP? High levels suggest MCTD, while low levels support a Dx of lupus. (2) anti-Ro? That's seen in lupus and also in Sjogren's, but people with Sjogren's tend to have very high ANA. (3) ETC...!
You've gotta be frustrated. I know the feeling: I was for many years. Life's too short as it is, so I very much hope you have a breakthrough soon. All my best, Vee
I am not sure what you mean by which autoantibodies I'm being tested for. This is so confusing so I don't understand some of this stuff. But I am definitely learning.
I have my labs from last year and this year from the rheumy. I know my RNP is a 9 because he just told me that from when he did the labs before.
So I don't know if that means anything? OK, so the anti-RNP is a 9.
That must of been last year. I've never had high levels. Dr. Bell who is my CFS doc had explained to me back many years ago when he saw my labwork from my first rheumy. He said I don't have mixed connective tissue disease because it's low. I don't know about anti-RO. I don't have any symptoms of Sjogren's. When I was under the first rheumy, he ruled out either scleroderma or Sjogren's by the labwork he did. I just can't remember. That was about 5 years ago.
Hi. Anti-Ro is *also* seen in lupus. I didn't have Sjogren's symptoms either. Mine were in the lupus range only.
Some autoantibodies rise & fall with flares, I think---while for others repeat testing isn't done because it's of no value (meaning once you're positive, you're positive).
But if your tests are negative but symptoms persist?---I think that's a different story! I mean, at some point our immune systems start making things they didn't make before. I've read that for many people, symptoms *precede* blood findings.
I don't know what the range is for anti-RNP sorry.
Keep us posted, "Postie". (I've been wanting to say that for a long time! )
Hang in there! Warm wishes, V.
So what does it mean if the anti-DNA tests for 5 years are always negative but symptoms are changing for the worse? I could have negative lupus tests my whole life but yet on the inside I could keep getting worse?
Like in January the sed rate was 30. But I've always had low sed rates so that was very abnormal for me. My CFS doc said it could have sat on the counter too long before they checked it. So I'm getting a new sed rate done so we can double check to see if a false reading was done.
What would that mean that our immune systems start making stuff that wasn't there before? Also symptoms precede blood findings?
I think my rheumy said under 50 would be the range for RPN?