HELP! My labs are screwy
Ok so the nurse just called with my lab results. The only one she ended up giving me is that my ANA is lower now than it was and she was confused. She said she's not sure I have SLE. The dr wasn't in, so she said she'd have to call me back tomorrow after getting it all straight.
HELP! Can your meds make the ANA lower? What would cause that? Would that then mean you don't have SLE? I HATE prednisone but even I have to admit I feel better the last couple days since they raised it. If they take my meds away and send me back to square one because of one lab test I am likely to really really lose it. Someone help me out. What does/can this mean???
I swear I read somewhere that being on pred can make your ANA lower. That was the first thing I thought of when I read your first couple of sentences and then you confirmed that you were on it. I wish I could remember where I read it. (Darn brain fog) I'm sure someone here could lead you in the right direction.
Not to get off subject...but I don't think it is the nurse's place to tell you that SHE does not think you have SLE. It was not right for her to upset you and then not be able to give you to the dr. to answer your questions. Furthermore, most docs don't go on ANA results alone to dx SLE. I'm sorry if I am out of line, but again, I don't want you to get upset or worried when you already have enough going on. Stress is our worse enemy.
I am sorry I was not of more help and I hope you get answers soon. Please keep us posted.
Kathy aka Beauchick
Thanks Kathy. Yes, I know she shouldn't have said it, and I think as soon as it came out of her mouth she realized it as well. Her next words were don't worry about what I've just said, I'll have the dr call you tomorrow. I just don't understand why my labs would be like that when the day I had them done I felt HORRIBLE! That was the day I was so swollen, pain, fever, even my head was swollen. So it's just really weird. It took me 7+ years to get a diagnosis finally, and the thought that they now have no clue what is wrong with me terrifies me. :( :(
Hmmm off to look up prednisone now. Thanks for the tip.
Hi Tracy, it's me again.
Your post bugged me so much I tried to research for you. I googled "prednisone and ana testing". I probably should word it different but I did come up with a site that touches a little on the subject of the two.
Go to the 9th paragraph down and read what it says. I'll keep looking.
Thanks K! That was interesting. I'm definitely asking about the pred. affect when they call tomorrow. Why do they play around with people like this? GRRR!!! I was actually feeling better today too, despite getting round by the prednisone. UGH! I have a LOT of the other criteria for dx, even if the ANA changes but I've discovered none of these drs around here are very "up" on lupus research etc.
Hi Tracy Dawn;
ANA laboratory reports include a titer (pronounced TY-tur) and a pattern.
The titer indicates how many times the lab technician had to dilute plasma from the blood to get a sample free of the antinuclear antibodies.
For example, a titer of 1:640 shows a greater concentration of anti-nuclear antibodies than a titer of 1:320 or 1:160.
The apparent great difference between various titers can be misleading.
Since each dilution involves doubling the amount of test fluid, it is not surprising that titer numbers increase rather rapidly. In actuality, the difference between a 1:160 titer and a 1:320 titer is only a single dilution. This does not necessarily represent a major difference in disease activity.
ANA titers go up and down during the course of the disease, and a high or low titer does not necessarily mean the disease is more or less active or that you do or do not have the disease. Therefore, it is not always possible to determine the activity of the disease from the ANA titer.
A titer above 1:80 is usually considered positive. Some laboratories may interpret different titer levels as positive, so one cannot compare titers from different laboratories.
The immunofluorescent antinuclear antibody (ANA or FANA) test is positive in almost all individuals with systemic lupus (97 percent), and is the most sensitive diagnostic test currently available for confirming the diagnosis of systemic lupus BUT ONLY when the test is accompanied by the other typical clinical findings of Lupus. The level of the ANA alone cannot confirm or deny Lupus! A negative ANA test is usually strong evidence against a diagnosis of lupus. HOWEVER, there are instances where SLE is present without detectable antinuclear antibodies (ANA). ANA-negative lupus can be found in people who have anti-Ro (SSA) or antiphospholipid antibodies.
Do not let your nurse or your doctor dismiss Lupus as a diagnosis or change your medications based soley upon the fact that your ANA level has lowered. As I stated before, ANA levels (titers) go up and down during the course of the disease.
Arm yourself with as much information as you can prior to speaking with your doctor so that you can make informed decisions, with him, about your next step.
I wish you the best...let us know how it goes
Peace and Blessings
Hi, Tracy - my ANA titer has gone up and down throughout the course of the lupus - when I was first diagnosed, it was 1:10,240 - it went down significantly on high dose prednisone and went back up on cellcept, my rheumie finally stopped testing it because it seemed to have nothing to do with how active the disease was. Now he checks my sed rate, c-reactive protein, and complement levels - those and kidney function tests seem to be the best indicators of active lupus for me. The only lab test that seems to actually correlate with how I feel is my sed rate, the higher it goes the worse I feel. I can also tell when my red blood cell count gets low because I feel tired, dizzy and short of breath - other than those two tests there seems to be no relationship between my labs and my symptoms.
watch out for Sed Rates
This is something I posted over ot Laura's Lounge-- it is important to those of us who can go in, have one done and know that the sumptoms we were feeling are related:
Regarding the SEDIMENTATION RATE ( Sed Rate, ESR). It is exactally what it says-- the cells migrating to the bottom of a straw is measured-----It is the easiest test to run in the world ( a 2 years old does it when they sip up a straw and use their finger to close the end holding the liquid inside-
It is a great screening when you have an idea of your numbers. Autoimmune, viral, etc can be indicated. It is not a definaing answer ot tests but for screening, I think it is great- not much to interpert---My normal runs 50-60 and has gone to 120's when in crisis (relapse before upping meds) (normal can be 0-15, 0-20 depending on the lab and the WAIT
HINT: If you go for a SED RATE (aka ESR) do NOT go to a lab drawing station (where they ship it out for testing) go to a hospital (unless your doctor does it in house)-------- This is one test that cannot sit or else you would get the wrong results. The test is easy to describe-- they suction up your blood into a glass straw with measurements. They wait for the cells to start to separate ( cells-serum) and after an hour VOILA your result!!! ( the line where the separation is) If the blood sits for a long time, awaiting processing the cells start to break down. People think if they go to the lab the same time every time for the test and it is sent out things will be fine, but who knows how long the tube sites the cells wait and what time the test is set up, most big labs wait or do them on 3rd shift, even stats do not get done immediately, they have to be transported, then processed before they hit the tech who might or might not set it up immediately-- you still lost over a few hours in testing)
When you go to the lab and you get a lab tech with a brain (no comment) be sure to let them know it is RA/Lupus whatever and is should be run ASAP. Most hospital tech will give you that benefit and try to push it through. (also most of our tests do not have to be done fasting)
There is my educational seminar for the month
Yup my doc said pred can lower ANA, it happened to me, it's what my doc called remission then they ween you off the meds...... well mine did for me.
But ya I think they still consider it lupus even if your ANA is lower, I've had mine teeter up and down a bit since my dx.
hope that helps keep us posted