tested for lupus when I was 6

I just received my medical records from when I was a child. I am now 30. Apparently, they were looking into lupus. I had the butterfly rash for 3 winters, but it went away on its own. My ANA was 1:80, then 1:40 and now my ANA is 1:60. I has some symptoms, but nothing ever came out of it. It can't be a coincidence that now I suddenly develop all of these autoimmune issues. I need to follow up with my doctor. Anyone have any thoughts on this? I don't mean to be redundant in what I write, I'm just so confused. I should say that I've never been diagnosed with lupus.

I might suggest that when you get your labs done, make sure you aren't feeling well at the time. If you are having a good day and everything feels good when you get your labs done it might not show what is really going on correctly.

When I was first diagnosed my Dr. made me come in several times to do labs until she caught me on a bad day and got a positive ANA result. She said my ANA was "barely positive" but that she was certain I had lupus. Lupus is progressive though and the earlier you can get it diagnosed and get treatment the better.

Years later....
Right after I woke up from a coma, after being on life support and taking high dose chemo for several months, plasma pheresis, blood transfusions, high dose IV steroids... they did an ANA test on me and it was negative. WOW!

Did I all the sudden not have lupus then after going through a near death experience from lupus?

NO!

Could they explain that?

NO!

Three months after that I was again testing on the positive side of the ANA tests. bummer.

Get a good Rhuemy that you can talk to and get to the bottom of things. I wish you good luck! I know it's hard.

Hugs.

Steph - I was one of the ones who were borderline since teen years and wasn't diagnosed until 35/36 years old. Like Lupus leaper said when I was sick the tests were positive. Sometimes it took a month or two to get the test, I was better and the tests were negative. The ANA's didn't show up positive all the time until I had Lupus full blown. Some of my other results are back and forth even to this day, others are now a steady constant.

My daughter, like you, has had symptoms since 5/6 years old (she is now 10) mostly malar and discoid rashes, liver, glands, nervous system, gastritis, costochondritis as well as the flare symptoms. It is like clockwork with her now. She goes out in the sun all day. Week later fever, rash, stomach ache, migraines and no appetite. Week after that some kind of system inflammation or neuro problems. Just like dear old mom. Her doctors and myself realize it is Lupus, but there are no definitive markers for her yet. I would love for those bloodwork results to just say a definite yes or no. I want her to be on stronger medication and nip it in the bud.

I am glad to see they gave you medication. Please take it. Either way, it is a connective tissue disease, and you need the medicine. I wish I could have been medicated sooner to help stop the progression. I'm still waiting for medicine and getting worse. I want to encourage anyone who has this chance to benefit from having medication available. Lupus is not an easy thing to digest. I still think my Lupus will go away and get mad 6 months later when it comes back. You do get better at handling it, there are still times I am overwhelmed, but a whole different attitude now. I realize everything is okay and live to appreciate all that is around me that I cherish so much. I too am much stronger than I ever thought possible. My family even placed bets that I would live longer than all my other relatives because I have made it through so much. I don't know though, my great grandmother died just 5 days before she turned 100. That is a steep hill to climb even for me.

You know, her husband, my great grandfather was 88 when he died from Lupus. Goes to show you just don't know what life will hand you. 88 is not bad.

Here is to all of us and a long blessed life! - Kristin