i moved this past summer to florida and i saw a whole new doctor.. i been treated for lupus for about 6 years now.my ana screen IFA is positive and so my ana titer says 1:40 so my doc says i dont have lupus so thats the indication he gives me. so i am so lost as to what is wrong with me although maybe the change in the move i have felt better living in the warmer climate. i have humana as health insurance problem is theres only 1 doctor for the orlando florida area UGH and i defenetly need a second opinion as i feel that doctor must not know much cause i left so conmfused from there and he lacked in explaining anything to me.. he said to me (im not saying u didnt have lupus im saying its not showing up now) my response was how can i have lupus for 6 years and now it just doesnt show up. i left so confused from there.. i have to call my primary doc so he can request a new doctor for me out of the area.. its frustrating.. has anyone ever heard this happening... oh and he said reduce my plaquenil which i havent im scared to do it incase hes wrong...
Ugh! So sorry. I really wish they'd throw that ANA test out of the window. Yes, I've heard of that happening, and I've experienced it myself.
Definitely get another opinion. Another option: find a good internist that treats Lupus. I got fed up with Rheums and my internist now treats me, and I feel better than I have in the 4 years I've had Lupus.
Don't give up until you find a doctor you are happy with, a doctor who listens to you, and a doctor who does not rely solely on an ANA result to diagnose and treat. Oh, if I were you, I'd also talk to your primary about your hesitancy to decrease your Plaquenil. If I were you, I wouldn't want to decrease it either, especially if you have improved while taking it.
Best of luck to you.
Sharon
Hi,
Oh yes, I have fired many a Dr. in my day. First let me tell you that I am an RN. Yes some even treated me with no respect. Anyway, I have tested positive and negative ANA. I am blessed to have found a Rhumy that worked on Lupus research at MAYO in Mn. He is awesome. So- here is what he said "look you have Lupus I know it, you know it"! The next tests he ran were a lot of DNA profile tests. I had to pay for them out of pocket $5000. It was worth it. Long story short -It was postitive for Lupus.. it showed up in my liver. There are so many unknowns and research is on going. Don't give up hope. Myself, I would never quit a med that is working. Good Luck and keep fighting for yourself.... It will pay off :-) Take Care and good health to you!
Lupus is a sneaky adversary- it can hover around below the radar with normal lab results for long periods before raising its ugly head again. It appears that your doctor says your lupus is not active now and that is the nature of the beast I'm always delighted when my illness takes a break for a while. But you are wise to be wary of stopping your plaquenil- as this drug is known for preventing or decreasing the severity of flares. Stopping it can lead to a very severe flare- sometimes life threatening. And negative labs BTW does not necessarily mean that you have no symptoms- which for some reason is difficult for doctors to understand.
I had a positive ANA when I first went to the rheumatologist. Before the results were in, he doubled my arthritis meds and after the results came in, he put me on Plaquenil. When he reran the tests, the ANA was okay. He said that meant the Plaquenil is working. Has anyone considered this for you? You said that you are on Plaquenil. My rheumatologist also checks each visit how many joints are swollen or inflamed. Just one week off of the Plaquenil (pre back surgery) more than doubled the inflamed joints so it is definitely helping!
thanks guys for ur input very interesting i am still searching for a new doctor. since i have moved from up north massachusettes to down south to florida i guess the change in climate has been helping me cause i have been feeling pretty good. but i always have that fear that i am going to get sick.