Signficant postive ANA....and then Negative

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Regular Member

Date Joined Aug 2015
Total Posts : 24
   Posted 1/28/2016 8:43 AM (GMT -6)   
I'm sure this has been asked several times before, so I apologize for being repetitive.

In September, I had 1:640 positive ANA. Since then, I've also discovered that I'm AMA positive (and currently scheduled to see the liver specialist--even though all my liver counts are normal).
Anyways, the last couple ANA blood draws (2 months apart), were both negative.

Can your ANA shoot up that high and then be normal?

My rheumatologist says "once it is high, we always label you as ANA positive and treat you as such".

I have been taking hydroxyclorquine, however I have decided to stop due to these pending liver isses (at least until I have a better idea of what is going on). Maybe this med depletes the ANA?

Anyone else with experience?

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 1/28/2016 9:40 PM (GMT -6)   
Ana levels can rise and fall.

Did you discuss stopping the medication with your doctor? It's not wise to do that without their knowledge.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 1/29/2016 12:05 AM (GMT -6)   
Hi and welcome to the lupus forum. To answer your question Joy is correct that the ANA can be positive and then negative. When DX'ing lupus Rheumy's look at the criteria listed at the lupus foundation. You must have 4 out of the 11 symptoms to received a DX or lupus.

There are many reason a person can have a positive ANA. My child has had a positive ANA at 1:640 like yours since she was 7 years old. She'll be 23 in February and hasn't been DX'd with lupus yet. Matter fact she only shows one or two other symptoms. Considering how bad my lupus is I'm surprised she doesn't have it.

As for hydroxyclorquine depleting your ANA, this is one of the very first medications they treat lupus with. It would actually help lower your ANA. You should consider letting your Dr know that you've stopped this medication. They like to know when you make in changing in your diet. I've never heard that once your ANA is positive you treat it as such, that's a new one I've now heard.

Wishing you the best in figuring this out and I'm sure there will be many along to welcome and give you their opinions.

DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Regular Member

Date Joined Oct 2014
Total Posts : 27
   Posted 1/29/2016 4:16 PM (GMT -6)   
I have also been told that once you are positive you are positive...however Ana can be positive and you may not have lupus. Mine went negative after treatment. My doctor told me once you are positive no need to retest.
I am also AMA positive..I know I posted to you before. I am still on plaquenil. It has really helped me.

New Member

Date Joined Feb 2016
Total Posts : 1
   Posted 2/1/2016 4:15 PM (GMT -6)   
Hello, all. I have a seven year old daughter with a significant list of symptoms that look like some sort of auto-immune issue. She has had complaints since she was three or four, and the pediatric practice that we went to was made up of mostly a rotating stream of nurse-practitioners. She only saw a physician one time in the seven years we went there, and although the NP's are great for little stuff like strep or flu, it was frustrating to have to start from scratch on every GP visit with a massive history. (It is WAY too long for a seven year old). Anyway, I spoke with a friend in a different state who is a pediatrician, and she suggested that I request a referral to a rheumatologist. I did, and got one, but made the appointment in December and first available was in mid Feb. She told me to ask for an ANA to be done by the pediatrician because the visit was so far away; she said if it was positive maybe I could get in sooner. ANA was 1:160 / speckled, negative on DNA & Smith and a whole bunch of other stuff I can't remember the name of. I finally realized if I was getting my medical advice from a buddy out of state that we needed to change pediatricians, so I did. The new pediatrician ordered another ANA, and this one was negative. I haven't seen it, so don't know how it was tested (what method) or anything...or if what the threshhold is for this lab to be "negative".

My worry is this. We've seen gastroenterologists before, as one of her major symptoms is abdominal pain. Every time we went in, if the labs were negative, they blew off the symptoms. Is this negative ANA going to mean that we are dismissed by a rheumatologist? There is a shortage of pediatric rhematologists in the city, so I will have to start from scratch with a several-week-wait time to get a second opinion. I just want someone to do something that will make her feel better. I don't care about diagnosis except as it relates to treatment and them watching the right stuff for ongoing evaluation, and she is in considerable pain. It's hard to see.

Forum Moderator

Date Joined May 2005
Total Posts : 7673
   Posted 2/1/2016 4:26 PM (GMT -6)   

Some rheumatologists do mistakenly assume that a negative ANA means nothing auto-immune is going on. One way to get a rheumy that is more well-versed in auto-immune diseases is to visit and find the information on your local chapter. Then contact the local chapter and ask for the list of Drs who are active on their advisory panel. These will be the local Drs who are interested in Lupus & similar auto-immune diseases.

Make sure that you take a copy of the positive lab results with you to the appointment (a copy the Dr can keep), as well as a very complete written list of your daughter's symptoms. Go over every symptom with the Dr, include any details as to when they occur, how long, severity, anything you can think of.

If they try to blow you off, I'd go with the "My daughter is in pain, Would you let YOUR child remain in pain" approach. Sadly, a plea for help is often better received than indignation that they don't do better.

Best wishes.

Post Edited (Lynnwood) : 12/26/2016 8:00:40 PM (GMT-7)

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