I recently had blood work done and all came back undetected except for DsDNA at a titer of 1:10. My nuerologist and internist and general doctor all say that this is negative for lupus. I have had some symptoms, namely photophobia and seizure like symptoms. Can anyone offer any insight? Are my doctors right?
I guess what I am wondering is if I should seek a 4th opinion? I have suffered for years with weird, unexplainable symptoms and as of about a month ago I began not being able to drive because my eyes were so sensitive to lights. I can barely look at y phone and the computer and now I am on topamax and ativan. These meds don't seem to be working too well. Anyways, I was told by my primary doc that I am a hypochondriac and have OCD and is sending me to a counselor because he doesnt believe my symptoms are real. My nuerologist says that the titers on the dsDNA are too low to be considered positive for lupus. No doctor can help me so far. I just don't know if I should go to a new doctor or if it is useless right now and I am barking up the wrong tree.
Jen, hi & welcome. I'm just a patient, so please read in that light!
My recent labs display the following ranges for anti-dsDNA, in IU/ml.
< 25 is negative
25 to 34.9 is equivocal
35 to 99.9 is weak positive
100 to 200 is positive
> 200 is strong positive
BUT your lab may use different reference ranges than my lab, OR your test may have been a different anti-dsDNA test entirely than mine was! Therefore I think you best move is to request a copy of your labs. And if there are no reference ranges printed, ask your dr. to provide those ranges.
Re: your extremely light-sensitive eyes, have you looked into other possible reasons? Some are strictly EYE PROBLEMS, I think, so I'd definitely want my eye doctor to weigh in.
Re: "seizure-like symptoms", are these flat-out seizures? (Hope not!) Or migraine-like visual disturbances, meaning accompanied by huge headaches? Or just brief visual disturbances, where your vision is temporarily haywire? Did they start before or after you started Topamax and Ativan? (I see dark, wavy, dancing lines occasionally. Bright light seems to provoke, e.g., halogen bulbs, or looking straight into the bi-Xenon headlights of an approaching car. But I have no convulsions, headache, or anything truly awful... only the wavy vision, and only briefly.)
Re: your years of "weird, unexplainable symptoms", I don't know what you mean by that (sorry).
Thanks for the reply, Vee. The paper just says that the dsDNA was detected and the titer was 1:10. I think if it is not lupus it is a seizure disorder. I have had a myriad of strange symptoms, if my eyes didnt hurt so bad trying to type on here, I would type more about them. I think I am going to get one more opinion from one more doctor. It couldnt hurt.
I hope you get clarity soon & that it's something "simpler" than a seizure disorder. But I'd have my eyes checked by an eye dr., if you haven't already... as everyone should have that done regularly. Good luck!
Truly, I feel for you. I too am dealing with something similar & Docs cannot figure out what is going on. Positive dsdna and negative ANA. I have pain in my arms that feels like my arms are on fire!! The pain goes from my shoulder to my fingertips, and it is bilateral (both arms). I do not know what these are called, but... if I were to grab a doorknow & try to turn... that place in your outer arm that rotates... that feels like it is on fire even when I'm at rest. That went on for 8-10-12mths and now it's gotten worse. In addition to that pain, I'm having pain deep down in my arms... an aching kind of pain... a debilitating kind of pain. A pain that has caused me to drive myself to the ER 4x now. About 4-6 weeks ago, I started noticing that when I'm in pain... on the vein that goes up the inside of the arm... by the thumb and forefinger... has soft nodules on it. They're VERY noticeable... the nodules even go up into the vein that splits... at the junction of the thumb and the pointer/index finger. This makes my entire hand & palm hurt. - Docs put my on Lyrica. It did not work. Docs put my on Tramadol. It did not work. Doc put me on Hydrocodone. It did not wok. Finally Docs put my on Hydrocholoroquine. It worked for a little while... a good 4mths. NOW the last few days the pain has come back. ugh. no answers. completely stressed.
Leslie, hi. Did you get copies of all your labs, including urinalysis? I'd be looking for---
1. LOTS of special AB (antibody) tests even though ANA was negative. When ANA is done using the "reflex" testing approach, if it's negative, all the various AB tests aren't necessarily run. (That's what "reflex" conveys.)
One reason you'd want to see the specialized AB tests run is that there's a "subset" of lupus called Ro-lupus. It accounts for only a small percent of lupus patients, maybe 3-5%. In it, ANA stays negative but anti-Ro (SSA) is positive.
2. How high your anti-ds-DNA was, on the scale the lab uses.
3. Whether you were evaluated for Rheumatid Arthritis. High levels of rheumatoid factor coupled with a low ANA can point to RA as opposed to lupus. Also, positive CCP (cyclic citrullinated peptide) antibodies are considered fairly specific to RA. Also, I wonder about those nodules you mention...
4. Were tests run to look for muscle inflammation? CPK, for example?
I know there are various conditions that aren't autoimmune that can cause severe shoulder & arm pain. Unfortunately, offhand I can think of only a few! One is polymyalgia rheumatica, but it's seen in older people. Bursitis, too.
Having had my own episodes of relentless pain before I got answers, I feel for you. My breakthrough came when I realized that I might have a less common presentation of lupus, so I switched to a metro rheumatologist & got help fast. Have you tried any new rheums? Anyway, I hope others add more & that you get some clearer answers and relief soon. Sending best wishes, Vee
VeeJ, thank you so much for replying. Let me see if I can answer any of your questions. Yes, I got copies of everything. You would be amazed at how much I have. Literally, it is 8-10" thick, or more! I was gonna give you the ranges, but... ugh... I JUST realized that my OB/Gyn still has everything. She is a new OB/Gyn. I told her everything I've been experiencing & to my EXTREME shock, she asked for my paperwork & is trying to help me figure out what is going on. Can you believe that? Super nice!
OK, I found some duplicate paperwork...
Here are some results.......
DNA AB DS Crithidia Titer 1:40 high range <1:10 Is this real high?
Absolute Eosinophils 11 range 15-500
RDW 16.1 high range 11.0-15.0
Complement C4C 16 range 16-47 (decent now; lower b4)
Rheumatoid Factor 7 range <14
ANA Screen IFA, Negative
Cyclic Citrullinated Peptide <16 negative= <20 (weak positive is 20-39)
ALT, high 35 (range is 6-29) what is this again?
AST, high 37 (range is 10-30) what is this again?
Absolute Basophils 17 (range is 0-200) - seems like this is low?!
I do not see that anti-RO was tested? Unless I missed it?! Wait... anti-RO is SSA? Is that for Sjogren's? All it says under that is <1.0 Neg Al (range <1.0 NEG). SS-B has the same result.
OTHER THINGS THEY TESTED........
MCHC, MCV, Monocytes, Neutrophils, Platelet Count, Red Blood Cell Count, White Blood Cell Count, SM and SM/RNP Antibodies, Sjogren's Antibody
Complement Component c3c, Albumin, Albumin/Globulin, Alkaline Phosphatase, Bilirubin, Bun/Creatinine ratio, Calcium, Carbon Dioxide, Chloride, Creatinine, Globulin, Glucose,
Absolute Lymphocytes 1943 (range is 850-3900)
Absolute Monocytes 342 (range is 200-950)
Absolute Neutrophils 3287 (range is 1500-7800)
eGFR African American - WTH is this??? I'm Caucasian... never heard of this.
eGFR NON-AFR American - WTH is this???
Fasting Reference Interval (Potassium - Protein, total - Sodium - Urea)
Muscle inflammation...... uuummm.... well, they've definitely talked about inflammation! But muscle inflammation? Uummm... is that cpk? or is it C-Reactive Protein? C-Reactive Protein is 1.6 (range is 0.0-4.9).
What is the world is a Metro Rheumatologist??
Docs have tried Lyrica... did not work. Tramadol did not work either. Currently Doc increased Gabapentin from 300mg to 600mg. Been on 600 for 1 week and it is not working yet. The ONLY med that works so far is Hydrocholoroquine. Not sure how all of these differ. No time for research. THANKS VEE!!!
p.s. Is there any way to post a pic of my nodules on here?? They're NOT like typical RA nodules. I've seen those on my dad. These are soft... they're in the veins. AND they only come up from time to time... mainly (but not always) when I'm in pain.
Leslie, if DS DNA range is < 1:10, then 1:40 would seem to be fairly elevated. But since your lab uses a different range than mine, I think asking a rheum who knows how to interpret "Crithida titer" results is your best bet. Btw, I believe anti-ds-DNA can elevate in people who *don't* have lupus, because of infection, etc.---so I'd ask about that, too.
ALT relates to liver; elevation can indicate liver cell damage. AST can suggest liver or muscle cell damage. (BTW, meds can affect the liver, including certain OTC's...) Yes, anti-Ro is the same as SSA. It may be positive in lupus & Sjogren's. GFR is glomular filtration rate, a measure of how well kidneys are functioning. The ranges are different for Afro-American vs not, so that's just standard lab nomenclature. CPK measures muscle inflammation, I think. CRP is a broader test for inflammation.
Speaking of meds, certain meds can also induce, in susceptible people, a form of lupus called Drug-Induced Lupus Erythematosus (DILE). Hallmarks are positive ANA, positive SS-DNA (that's SINGLE stranded DNA, as opposed to DOUBLE standed), and antihistone. Cholesterol meds and BP meds are among the various top culprits.
And meds can also cause severe pain without inducing a "condition". Cholesterol meds, for instance, are famous for inducing muscle pain, and many people quit them because of that. In addition to the meds you've tried for your longstanding arm pain, do you take any OTHER meds?
C4 is one of the "serum complements" that play some sort of helper role in proper immune functioning. In lupus, low C3 and C4 are *so meaningful* that they're both listed in the ACR diagnostic criteria. So for that, I'd ask my drs. in what conditions C4 can deplete.
By "metro rheumatologist", I meant one affiliated with a large teaching hospital. That was just my way of saying you don't need a run-of-the-mill, small-town rheum, you need an ARTISTE, someone who's seen tons of lupus (and its close cousins) in all their guises---and all the look-alikes, too.
Meds. Interesting that hydroxychloroquine (I assume that's what you meant, the generic form of Plaqeunil) is the one med that's helped. It's used in milder lupus & RA, and I think Sjogren's, too. (By "milder" I mean no major organ involvement, i.e., heart, lungs, kidney, CNS. If those major organs are affected by lupus, etc., bigger meds like steroids or immune suppressants are required.) Hydroxychloroquine modulates the immune system without flat-out suppressing it, has anti-inflammatory and sun-modulating effects, boosts energy, etc.
It's also interesting that your pain is relegated to your arms. Have imaging tests been done? My next-door neighbor had a nasty bout of Polymyalgia Rheumatica (I'm really scrounging my memory here) that responded to a short course of steroids. i.e., not autoimmune but presenting with some of the same symptoms seen in rheumatological autoimmunes. I think it affects mostly senior citizens, which may not apply to you...? And was bursitis ever discussed? (Bursitis can be seen standalone or in lupus & close cousins.)
For posting pics, there are instruction somewhere in FAQ's or Posting Policy (hyperlinks above). I'll locate & add a P.S. to this.
Wish I knew more, but hopefully above will help some with your next round of questions. Your OB/GYN sounds great, btw. Years ago I was guided by an curious (but cranky) endocrinologist: a real thinker who loved a mystery. Bye for now, Vee
Re: pics, the best I could find is as follows. Open "Posting Rules" hyperlink, then scroll about halfway down to the header "How to Share Information". There you'll see how to contact the appropriate party. Bye.
Hi Leslie, Depending on how long ago your DS DNA titer was done, now most labs use a test method that measures in units rather than ratios (35 units rather than 1:40) You might ask to get it and the ANA repeated. Some useful tests that aren't listed on your labs would be sed rate, anti-phospholipid antibodies, urinalysis to look for blood and/or protein. Anti-dsDNA is specific for lupus, so with that said, one positive test result doesn't make a diagnosis. This antibody is associated with kidney manifestations of lupus, so watching the urine may prove helpful. Diagnosis depends on combination of test results and symptoms. You might compare your list of symptoms with those on the sticky notes at top of lupus board, and look at alternative criteria as well. Your complement C4 is right at bottom of range, which is probably meaning as well. RDW is often elevated in lupus too-has to do with how much variation there is in size of red blood cells. Muscle enzymes like CPK or CK (same thing), aldolase, AST & ALT can be elevated in myositis which occurs in lupus and other rheum conditions and causes muscle pain/aching. AST and ALT are liver enzymes as well, so can't tell from this test if they are elevated from liver or skeletal muscle, but if elevated, can be broken down to identify which it is. The soft tissue nodules are meaningful. How big are they? Sometimes they will just feel swollen and squishy and be 1-2 inches in diameter. If you can see them, you might take a picture to show your Dr. like a profile to show them raised. Hope that helps. Have you seen a rheum? It often takes repeated testing over years to get answers. I hope you get more clues to show up and yield a diagnosis!
I am in a similar boat with a posetive ANA and a dsDNA of 32 IU/mL. Right now, my only problem is muscle pain and very delayed healing from minor exertion; so nothing serious right now. My MD and I are treating my post menopause insomnia and I'm hoping that will stabilize my immune system a bit. I was truly gobsmacked to read the ANA and dsDNA results.
I live in Alaska and have a three month wait to get into a rheumi; good thing my symptoms aren't very significant.
Hi, Kaypee, and welcome! If your lab uses the same ranges mine does for anti-ds-DNA, then your results = 32 are in the "equivocal" range. My lab uses the following:
< 25 is negative
25 to 34.9 is equivocal
35 to 99.9 is weak positive
100 to 200 is positive
> 200 is strong positive
I've read that it's possible to have slightly elevated ANA & anti-ds-DNA yet NOT have lupus. But even so, for any anti-ds-DNA number above "negative", personally I'd want to see a rheumatologist for a complete workup, so I'm glad you're going. Another good reason to go is that some problems in lupus are "silent", kidney involvement being the one that comes to mind first. (If your BUN and creatinine values were in-range, and urinalysis was also OK, those would all be strong signs that your kidneys are functioning well.)
Have you seen the "sticky posts" (permanent info posts) located above the user threads? They contain basic info that you could read before your appt. (The diagnostic criteria would be especially useful before seeing the rheum.)
How bad is your insomnia? Just curious, as I've been out-of-whack myself for about 2 years. Anyway, sorry you were gobsmacked but glad you found us. Sending my best wishes, Vee
Thanks Vee! I was reading all of the pinned posts for a week before I joined as a member.
I had high cholesterol, but all of my bloodwork and urinalysis results were normal except for the ANA and dsDNA. Quest has any dsDNA below 10 IU/mL as negative, and above that is posetive. Of course that's all subjective. At first, I didn't see how I could have lupus because I just don't feel that sick. I'd been very fatigued during winter, but once I started taking vitamin D I felt normal again.
But having read the pinned posts I remembered about 25 years ago I had sun rash every time I went out in the sun. It cleared up and never happened again. And never the classic butterfly rash that would have sent me running to the doctor. So may-be I've had lupus for at least that long and never knew it?
I think my MD is unusual ordering such a broad panel, so I'm very lucky. I think talking to a specialist will be a very good idea for long term health maintenance.
I've had sleep troubles for about 4 years now. I take a long time to go to sleep and then I wake up pretty frequently. Since it started as I entered menopause, I'm suspecting the two are related since it's a very common problem at that point in life. I'm going to try very low doses of amitryptaline to help with better sleep quality, I just have to swing by Costco tomorrow to pick it up.
You know, it's always tough to sort things out. Is insomnia from anxiety, menopause or lupus. Or is the insomnia triggering lupus? I'm a Chemist so I'm OK running experiments on myself until I figure things out.