I am a little confused and looking for advice. I have been on plaquenil since aug last year. When I was first diagnosed my ANA was positive and so was my ds-dna. I recently have been having alot of shoulder pain and hand pain so my PCP order a Rheum panel on me. It surprisingly looks pretty good, CRP is the lowest it has ever been at 0.9. Sed rate normal. The question I have is my ANA was negative also......so it this b/c of the plaquenil? I have a call into my Rheumie but was looking for advice or seeing if anyone else has had this. Thanks again :)
It could be because of the plaquenil, or could just be normal fluctuation. All three rheumatologists I have seen through the years have told me that ANA and other antibody test results will fluctuate and aren't always a good marker for disease activity.
After initial diagnosis and starting prednisone / plaquenil, my ANA and anti-cardiolipin antibodies returned to normal and have been normal since then (for about 12 years), until I recently tapered off of the prednisone. After I started the taper, my ANA tested high again.
Thank you!!
Hi Lucy,
Lovely news to hear 
....your ANA being negative can either be the plaquenil or your bloods fluctuating with your Lupus, when you having your next blood test as this will help even alot more.
Hugs Terri xxx
thank you guys so much for your posts and sharing information my AND also return to normal and my Rheumatologist that I was seeing at the time acted like okay you don’t have Lupus you don’t need to come back anymore and it was so confusing because I still have pain and neurological symptoms.
Holly, I had that happen to me with a Rheumie about 10 years ago. I never went back to him, found a good Rheumie through research and personal referral. I have been pleased with her care and appreciate her up to date research.
Wow!! Thank you for sharing your results. I was diagnosed in Feb. with SLE. I have had a lot of fatigue and pain (especially shoulder and neck region - bursitis). Every time I have blood work, something different is high. My wbc’s were high on last lab. prior to that it has been SED rate, C4 complement, and creatine kinase. I have high CRP every visit. I was worried about the C4 and WBC because everything that I have seen said that they are usually low. ,
jujubeee said:
ANA’s always fluctuate with lupus. A good rheumatologist looks at much more than the ANA, he/she looks at clinical symptoms like rashes, fever, protein in urine, etc. Because I have circulating autoantibodies mine goes as far as giving me specific IG tests every 3 months. In my case my telltale is usually my high wbc’s, high platelets and very high complements. We are all different and our bodies all react differently to lupus and to our meds. Here is a great article from Rheumatology Today on ANA negative (which by the way- you are NOT sero-negative ANA) Rheumatology News on ANA. Even though the article is about sero-negative it also hits on the fluctuations patients with lupus experience.
I agree with the other girls about getting a new rheumatologist if your present one thinks you no longer have lupus based solely on your ANA labs. If he does think that way, ask him why. If the explanation is one you disagree with since your are still symptomatic, then I strongly suggest a new rheumie.
Many HUGS, hang in there. You don’t need this stress to make things worse for you. Luv Julie
Nicely said Julie and stating all issues on testings with Lupus 
:) xxx
jujubeee said:
ANA's always fluctuate with lupus. A good rheumatologist looks at much more than the ANA, he/she looks at clinical symptoms like rashes, fever, protein in urine, etc. Because I have circulating autoantibodies mine goes as far as giving me specific IG tests every 3 months. In my case my telltale is usually my high wbc's, high platelets and very high complements. We are all different and our bodies all react differently to lupus and to our meds. Here is a great article from Rheumatology Today on ANA negative (which by the way- you are NOT sero-negative ANA) Rheumatology News on ANA. Even though the article is about sero-negative it also hits on the fluctuations patients with lupus experience.
I agree with the other girls about getting a new rheumatologist if your present one thinks you no longer have lupus based solely on your ANA labs. If he does think that way, ask him why. If the explanation is one you disagree with since your are still symptomatic, then I strongly suggest a new rheumie.
Many HUGS, hang in there. You don't need this stress to make things worse for you. Luv Julie
Hi Dutchess,
Please don't mention that word "Bursitis" LOL... as i suffer it in my feet and ankles, just constant cracking and pain all the time :)
Dutchess said:
Wow!! Thank you for sharing your results. I was diagnosed in Feb. with SLE. I have had a lot of fatigue and pain (especially shoulder and neck region - bursitis). Every time I have blood work, something different is high. My wbc's were high on last lab. prior to that it has been SED rate, C4 complement, and creatine kinase. I have high CRP every visit. I was worried about the C4 and WBC because everything that I have seen said that they are usually low. ,
jujubeee said:ANA's always fluctuate with lupus. A good rheumatologist looks at much more than the ANA, he/she looks at clinical symptoms like rashes, fever, protein in urine, etc. Because I have circulating autoantibodies mine goes as far as giving me specific IG tests every 3 months. In my case my telltale is usually my high wbc's, high platelets and very high complements. We are all different and our bodies all react differently to lupus and to our meds. Here is a great article from Rheumatology Today on ANA negative (which by the way- you are NOT sero-negative ANA) Rheumatology News on ANA. Even though the article is about sero-negative it also hits on the fluctuations patients with lupus experience.
I agree with the other girls about getting a new rheumatologist if your present one thinks you no longer have lupus based solely on your ANA labs. If he does think that way, ask him why. If the explanation is one you disagree with since your are still symptomatic, then I strongly suggest a new rheumie.
Many HUGS, hang in there. You don't need this stress to make things worse for you. Luv Julie
Hi Terri,
I had just the opposite...I have never had a pos ANA but my Rhuemy said that as my kidney symptoms have improved I may actually show a pos ANA. I take the ANA indicator as just that...an indicator but certainly not a definitive diagnostic tool. It may be that you are entering a remission. I do hope that is the case.
Love ya to bits,
DeAnne