View Full Version : need help sorting out what's wrong

07-22-2008, 07:39 AM
Hi There-
I have had two positive ANA(HEP-2 might say HBP-2,,can't quite read it) tests, one was in April with a titer of 1:640 and the other one was in June with a titer of 1:1280. That rhymatologist said he was confused given some of my other test results that were inconsistent with Lupus. He sent me to a lupus specialist and she ran a bunch of tests including something that was called ANACHOICE SCR, W/REFL IFA ANACHOiCE SCREEN which came back negative. Does anyone know if that's the same test? If so, isn't it weird to have a high positive one time and only about 2 weeks later have a negative? Maybe she didn't rerun the basic ANA test??? Although, she seems to have rerun the others so I don't know why she wouldn'd rerun that one.

I also have elevated counts on C3, C4 and C-reactive proteins, calcium, WBC and platelets (which has been elevated since last November, maybe longer...I know low counts are generally what shows up in Lupus) and a low glucose count (that's something new although I suspect I hadn't eaten for awhile and my blood sugar was down which I think I'm prone to).

My symptoms are muscle and joint pain, weakness, fatigue, achy and stiff. Basic flu like stuff. Memory and concentration problems which I go back and forth between thinking it's just the normal aging process to...No, something's wrong. No temperature. No specific rash, though the doctor said I had some malar erythema. I have always had a problem if I am in the sun too long, it just sort of zaps my energy, but I always thought this was true for everyone.(Being fair and blue eyed doesn't help) Shortness of breath, not where I'm panting but like I can't get enough air so about every 5 minutes I take a very deep breath and that feels a bit uncomfortable in my upper back, not really painful, just there.

I'm seeing the doctor Friday to followup and I'm sure she'll tell me what all the tests mean but I just wanted to hear first hand from some of you what your experiences have been.

The first time I saw the lupus specialist she was leaning away from Lupus and more toward Undifferentiated connective tissue disorder which seems like such a vague dx sort of like fibromyalgia which BTW I was dx with in 2002.

Thanks for reading this and for any help you can send my way.

P.S. I am on hydrochlorathiazide for High blood pressure and Fenofibrate for high triglycerides and high cholesterol. and take a vit D supplement for a vit D deficiency. I've recently, within the last couple of months, stopped taking Lexapro (for depression), Analapril (for high blood pressure) and estrogen (HRT) because I thought I was having side effects that could be the contributing/causing my symptoms and frankly when you're taking so many medications it's hard to sort out anything.

07-22-2008, 08:48 AM

ANAchoice with Reflex to Scleroderma Antibodies SCR may be useful in supporting or ruling out a diagnosis of scleroderma.

ANA Screen (IFA) with Reflex to Titer....Antinuclear antibodies are present in Systemic Lupus Erythematosus, Sjogren's Syndrome, Mixed Connective Tissue Disease, Scleroderma, liver disease, Drug Induced Lupus, and Rheumatoid Arthritis

ANA HEp2..follow the link..too much info to paste. http://www.genericassays.com/eng/prod/AL/AL_E_8100.pdf

No, it isn't weird to have a high titer then a low(negative) in a week or more. These tests can help determine the activity of the disease. When it remission it can be negative and of course, remission doesn't necessarily mean symptom free..

Each lab uses a different range what is low or negative...or even what is positive.

Be well,

07-24-2008, 04:32 AM

Do you know what your C reactive protein results were. I know they were positive but did they tell you the number? I just had a second ANA done this week, from a different hospital. I am very interested in hearing the results- whether they vary or not. I hope things work out well for you.

07-24-2008, 05:10 AM
I, too, am fair with blue eyes and thought getting tired from the sun was to be expected. I still think so. I also have the aches and breathlessness. I constantly do deep breathing exercises to combat that feeling. I always felt I was just dehydrated, so I also drink lots of water when I have that sensation. But sometimes when I am drinking I feel like I am suffocating and it's frightening.

I tested positive for the ANA and also for some specific antibody related to Lupus, but I haven't had a conversation with a rhmy dr yet. I had an appt but my blood work was late and the doctor examined me and asked me questions and told me that maybe I had a false positive ANA. She said she would run some more blood tests, but that I seemed normal. Then when I was leaving, she stopped me and said she had just rec'd the blood results from the other doctor and that I had that lupus specific antibody, so I have to go back again next week.

I am scared but I also feel like this can be managed if you have a doctor that knows what the heck they're doing. I just hope I can find one of

07-25-2008, 05:44 AM
Thank you all for comments and feedback.

My c-reactive protein is 1.6. I don't know if that's considered very elevated. The reference range says negative = <0.8 so it's definitely out of range but how high can CRP's go? Mostly I think my test results suggest I have an infection and/or inflammation but nothing very specific. WBC and platlets and sometime ESR (but not this time) have been consistently high (WBC btw 11.5-14.5) since last november. It would be nice to know where the infection is. I think they can do some sort of scan where they can actually see where the white blood cells are migrating to.

I am seeing the Rhumatologist this afternoon and I'll let you know what she says but as I already posted, I'm pretty sure she's going to diagnosis me with undifferentiated connective tissue disease. We shall see.

07-25-2008, 07:52 PM
Hey D,
Hope your appt went well. I also have had elevated white count since November, HIGH CRP (I found my highest one was 26 on a 0-3!!) This month it was 10 on a 1-3. My sed rate has dropped too (after having been elevated for a long time), low red cells, and really low lymphocytes. THats alot in common, huh?
Please let us know how your appt went, OK?

07-26-2008, 08:06 AM
Hi Lauri and everybody-
My apt. went well. ("well" in that the doctor listens to me and even says "that's a very good question" when I ask her things rather than making me feel like I'm bothering her which has been my experience with some of the drs. I've seen in the past. She's also come up with a plan)

She dx me with undifferentiated Connective Tissue disease as I suspected she would. Not enough criteria to qualify as Lupus. She said there was definitely something going on with my immune system.

She is starting me on Plaquanil which was previously prescribed a few months ago by my last Rheumatologist. At that time, I got extremely sick 2 days after starting it. Doubled over on the floor feeling like I wanted to throw up, go to the bathroom and passout all at once kind of pain. (mostly stomach pain but it radiated through out my whole torso) All the color drained out of me and I broke out in a drenching cold sweat. It lasted less than an hour hour but it felt like an eternity. I felt completely wiped out after. It was very scary. I was about to call 911. Anyhow, my new Dr. knows about that little episode and insists that if we start building up slowly to 400mg daily I am less likely to experience any side effects. I am starting out with only 50 mg and increasing 50 mg a week so it will take me 2 months to get to the prescribed dosage. I hear it can take as long as 5 months to get the full benefit of the drug :(

Concerning my elevated calcium level...I got her to do a PTH blood test because if that's elevated too I most likely have a parathyroid problem. I know this might sound funny but I'm actually hoping I do because that could account for a lot of my symptoms and it can be fixed! If it isn't elevated we'll just repeat the calium test in two months when I see her next.

She also sent me to get a lung x-ray when I reminded her about ny breathing problems.

Concerning my ANA results...I think it's pretty interesting that after I stopped taking analapril (High blood pressure meds) my ANA went back to negative after being so positive 1:1280. She didn't really comment on the possible connection. She just said the ANA results often fluctuate.

She and I agree that I can stay off High Blood pressure meds since starting another new med along with the plaquanil might confuse us. My blood pressure was around 140/90. I promised I would diet and exercise which I know I should be doing regardless but you know how hard that is when you're not feeling well.

Well I think I caught you up. Feel like I just wrote half a novel :)

Thanks again for listening and commenting.