June 15, 2020
Does anyone know about the AVISE® DNA test for lupus?
I had my 6-month app with my rheumy the other day. She offered me the DNA test for lupus. Is not covered by insurance. It is called AVISE® ($150) My doctor has diagnosed me with lupus and undiagnosed me several times. I'm so tired and confused because I take Plaquenil but because I also have made cell activation syndrome which is another part of the immune system with problems, she changes how to treat me every time I see her. Does anyone know about this test?
[lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]
June 20, 2020
It appears that this test can look for a specific protein in the blood, called C4d, that may be helpful in diagnosing lupus. While this can be useful for doctors, there are many other ways to diagnose lupus (https://lupus.net/tests/ ) and I personally would not go outside of my insurance - especially if you cannot afford it - unless all other means were exhausted.
I am surprised to hear that your doctor is changing up your treatments, reversing your diagnosis, and wanting you to do this test. That is a really tough thing to go through, especially when you don't feel well. Also, it's more standard to see your doctor every three months unless you're in remission. If I were in your position I would seek out a different doctor.
I hope you are able to get a more assured diagnosis and the treatment that you need. Please let us know how it goes for you.
-Ava, Lupus.net Team
June 22, 2020
Thank you dear Ava for your input. You are not the first person that suggests a change of physician. I wrote an article about the hospital in NY that is specialized in lupus and they have suggested the same thing to me.
I really haven’t switched because I’m so scared to start this process all over again. It almost feels like malpractice to me. Too many years this doctor changing her mind.
As much as I have advocated for myself, some periods you don’t even have the physical energy to achieve justice.
Last thing, she has prescribed be with Benlysta and the next appointment changing her mind again. My problem and weird case is that I don’t present inflammation in my tests but plaquenil has taking away the unbearable join pain and bone pain. Ok. I better go. To much talking. Thank you in advance.
July 29, 2020
I have a pain management Dr. who handles my Lupus, I see her 1 a month, she is very knowledgeable about Lupus.
I just received my lab results with an ANA being higher than my last results. My CRP has come down a little but still high.
My hormone levels are very low, magnesium is low.
She has advised me accordingly for meds.
I would advise you to seek out a new provider
Rheumatologist are not always the best people, at least in my area, they ignorant and uncaring.
My orthopedist specializes in Lupus care.
August 13, 2020
August 9, 2020
I have one done every 6 months and I show my insurance cards to them, even though they don't take insurance, which I find weird they have to have the insurance info on file, and when I go and have it done it doesn't cost anything even though I was told it would be $150. So double check with the lab that does this test in your area. You may have to just go to get the test done at their office and see what they do. I've never really questioned why I don't have to make a payment for the test, but the lab I go to told me I wouldn't be directly charged, like I said, they have my insurance info, but I don't even see a charge for it on my EOB's when they arrive. I have 2 insurances, my husbands job provides us with my primary health insurance and my Medicare is 2ndary, so that may have something to do with why I don't pay, but like I said I never questioned why so it may be the same for you too. The test gives you a lot of good information and tells you what type of Lupus you do or don't have, among many other genetic things that affect your Lupus.
August 13, 2020