Hello all, I recently had my Rheum appointment after being referred from my ENT about possible lupus... My titer when my blood was taken in October was 1:160, and now from the blood that took at the Rheum it came back 1:320. However, with all of my CBC levels coming back normal he can't diagnose. Pretty lost on where to go from here... Other symptoms include frequent infections, occasional joint pain in hands and knees, dry eyes, bad mouth ulcers, and fatigue.
An ANA of 1:320 is not only positive but clinically significant, meaning that it is not found in a small fraction of “healthy populations” like an ANA of 1:40 or even 1:80 is.
All that to say that something is “wrong with you” as I’m sure you’ve known and felt
The problem with Lupus is that there is no definitive test they can give. They find clues that help them reach a diagnosis but the diagnosis is subjective depending on the doctor. 3 different doctors can have 3 completely different opinions.
One Dr can see the same symptoms and labs and conclude it is Lupus while others will instead say “UCTD” which is a way of sayin they have proven there is an autoimmune illness but aren’t sure of what type. The UCTD label at least allows them to start prescribing meds tho without having to wait for more labs or illness to confirm a specific diagnosis (most AI illnesses are treated with the same meds anyway so specifics aren’t as necessary as beginning treatment.)
And then there are some Drs who won’t give any diagnosis! They want to see lots of labs, visually inspect symptoms and make a patient wait, in pain and discomfort for a long time. Stay away from those drs. They are more concerned with cover their butts than treating a clearly ill patient!
With a titer of 1:320 your Dr should have run what is called a “cascade” which means further testing after the ANA which helps specific which antibodies you have. DsDNA is run at that time as well as a few others. If one is positive it really helps with a diagnosis because those antibodies are very likely to be Lupus specific (meaning the don’t often come back as positive with other illnesses)
Many with Lupus don’t test positive for these other antibodies tho....or might at some point but it takes repeated testing over a long period of time to catch a flare of these antibodies during your testing window. Antibodies fluctuate and go up and down. We might have many many months between tests and even then, we are only catching a snapshot of 1 day! With changes happening constantly it’s no wonder it’s hard to catch them while active
Pressure your doctor into doing something more for you! If you have lots of symptoms and a poor qualify of life AND have the high positive ANA he has the option of offering you Plaquenil. It takes a few months for it to kick in but if you have an autoimmune disease causing inflammation and pain, it should help calm down symptoms starting at about the 3 month mark
You mentioned an ENt referred you. I got one from an ENT and allergist. That’s how my journey began. My nose is always terribly congested with no signs of allergies and I have an autoimmune ear disorder that plugs up 1 ear, often causing a swollen gland near my ear and makes me sea sick and dizzy. There is a connection I’ve learned between these symptoms and Lupus for some
Good luck! Don’t give up! I am sure you are on the right path
I was diagnosed with lupus in 07’ when I lived in GA. Moved to IN with the diagnosis and I fired 5 RA docs because everyone said they could not confirm the diagnosis even though their blood work provided the diagnosis. In GA I was treated at a training military hospital plus Lupus is more prevalent in that area which I believe is because of the training. Don’t give up. Keep looking for a doc that truly cares and will help you. Tell the doc you want to fill ANA panel ran and that you want to have the blood test when you feel crummy. This way if you’re having a flair it will be more visible in the results. Get your results and compare the out come for your self. If that doc isn’t willing to help you, graciously thank them for their concern and walk out and do not go back. Hunt another doc. I wasted so much time trying to convince docs of my diagnosis. If I have new issues and can tell the doctor has no compassion or concern I will not waste any more of my time on them. There are good knowledgeable docs out there just keep looking but don’t waste your time with the unhelpful.
You definitely need a second opinion. A positive ANA is anything above 1:40. Mine is 1:640, but a lot of times my CBC results are normal. Try to find a Board Certified Rheumatologist.
Get a new doctor ASAP!
And I have to correct the previous suggestion that CBC tests can’t heko diagnosis lupus. That is not correct! Low red cell counts, white blood cells or low platelets are some of the diagnosing criteria for lupus! Antibodies can attacks these cells and destroy them. My chronic low platelet count was the 1st indication I had Lupus!
Keep fighting for your care @A MyLupusTeam Member
I once was referred to a doctor like that and I just gave up but test kept coming back back positive. I was referred to another. After talking to him, i had little symptoms that i associated with something else. He started me on plaquenil and everything fell into place. If one doctor doesn't help at giving answers, go to another. We are our best caretakers.