This test is driving me nuts!
I had a positive ANA in '03, and my pcp said he thought I had
Lupus. A rheumy done another one last week, and it was negative.
So this rheumy doesn't think that i have Lupus.
My questiton is does any one know how common it is to have Lupus and a negative ANA? Should i have a biopsy of the rashes,
should the rheumy have suggested more tests?
Well, I guess I had more than one question.
Thanks for your help
The Lupus Foundation of America states, "The immunofluorescent antinuclear antibody (ANA or FANA) test is positive in almost all individuals with systemic lupus (97 percent), and is the most sensitive diagnostic test currently available for confirming the diagnosis of systemic lupus when accompanied by typical clinical findings." So my inclination is that it is relatively rare. Having said that, You could certainly be one of those rare cases.
I've been diagnosed with Lupus, but am changing rheumatologists. I've seen another in the past who said I definitely did not have Lupus, but had Sjogren's. Then two months later I was told that I do not have Sjogren's, but do have Lupus. I'm going for a third opinion (primarily because I do not trust the second and the first does not take my insurance) I say, keep trying to figure all of this out. Lupus symptoms come and go for many of us. I've had a positive ANA for at least 10 years, but was never considered to have anything other than FMS until last September. Good luck and keep us posted!
i have read that not everyone who has lupus has a positive ana.. and people who have a positive ana don't necessarily have lupus.. so i think that test is worthless.. and some people place way too much importance on it.. i also read that Lupus patients who have a negative ANA test usually have a positive test for anti-Ro (also called anti-SSA) or anti-La (anti-SSB)... so maybe you could get that test.. there is a list of symptoms that alot of doctors go by.. 11 of them.. and if you have 4 of them they think you probably have it.. my doc says sometime it is smoldering and they have to weigh the signs and symptoms with the science part.. so if you have four of the following...
1. A rash across the cheeks and the bridge of the nose
2. Scaly, disk-shaped rash on the face, neck, ears, scalp and/or chest)
3. Sensitivity to sunlight (such as severe rashes or illness [fever or extreme tiredness] from minimal sun exposure)
4. Sores on the tongue, inside the mouth, and/or in the nose
5. Arthritis (pain, stiffness and swelling in the joints)
6. Pain in your chest and side when you breathe and/or move
7. Kidney problems (Can be detected by a urine sample that shows protein and/or red blood cells in the urine, or by blood tests of kidney function called blood urea nitrogen (BUN) or creatinine. Severe cases may be associated with symptoms such as swelling of the legs and feet from protein leaking into the urine.)
8. Neurologic (brain) problems, including seizures, psychosis or strokes
9. Blood problems such as low white blood cell count, low platelet count or anemia
10. Immune system problems
11. Antinuclear antibodies (These attack the body’s own cells.)
now it doesn't say you can have three and the fourth MUST be a positive ana..? does it? i have many of these .. but not the positive ana.. soooo.. my doc is convinced i have it.. and is treating me as such.. some of my symptoms have been ellivated.. but this thing has really gotten worse in the last year.. progressed tremendously.. for what reason.. i can't pin point..
no one wants to have this disease.. but... no one wants someone to act like they are crazy for trying to pin all this weirdo mess on something.. i am going to another doc at the end of this month.. my doc is sending me.. but she is convinced he will find the same results.. he may decide something totally different.. but i don't think so.. i think he will just get more aggresive with what my doc is doing already... good luck friend.. you know your own body better than ANYONE else.. keep track of what is going on.. and discuss it all with your doc... if that one won't listen.. go to someone else..
What a relief to hear from someone who also has a negative ana!My pcp FIRMLY believes that it is Lupus. I have 6 of the 11 symptoms you mentioned in your post.
I thought maybe the rheumy was right, so I came down on my prednisone. I've been sick the last 4 days. I have that terrible rash on my scalp, face, neck, chest- its even on my back this time
my tongue and the roof of my mouth is a terrible mess-YUCK! I feel like a leper! I hate the looks I get at the local grocery store!
I'm very tired, slept most of the day yesterday. My whole body hurts. I wonder why I even considered the rhuemy's opinion?
I went back to my max dose of prednisone, I feel better today, but not "well". I haven't been "well" since 02/2006. My pcp has always
treated me, but now he thinks its beyond his ability. I've got an
appointment at UAB the university of Al, in september that seems so far away!
You are lucky to have a doctor that doesn't rely only on test results. I hope the new doctor you are going to see is wise enough to look beyond the neg ana. It really sucks to be "undiagnosed".
THANK YOU SO VERY MUCH FOR SHARING YOUR TIME & KNOWLEDGE. I HOPE YOU HAVE LOTS OF "GOOD" DAYS"
My rheumatologist doesn't even check my ANA any more. My symptoms (and other blood tests) tell the story, and that's how we decide on treatment options for me. My sed rate and other tests have been 'normal' that past two months, so we assume my lupus is going inactive now (I hope, I hope, I hope!) but she still sees no reason to check ANA again. I'm not sure if that's the right approach, but that's how she's sees it.
You most definitely can have lupus with a negative ANA. Mine was borderline positive many years ago, but has been nagative for at least the last 10 years. At one point my Anti-Smith antibody was positive (now negative). The anti- Smith is only positive in 10% of lupus patients wbut when positive it is very specific--meaning you definitely have it. When my ANA was negative, before th Smith was positive, the docs made my diagnosis by criteria. Also my complement was low-characteristic for lupus.
I would suggest going to a well known rheumatologist, for example, one at a university hospital. They tend to be more confident and are not afraid to make the diagnosis. A pcp is not experienced enough in ANA neg lupus to make such an important diagnosis.
I was told that often the ANA goes away with time. I do wish I had saved my positive labs for future doctors to see.
Best of luck.
I FINALLY go to the new Rheumie on monday! I agree that the whole.. undiagnosed thing is almost as stressful as the whole mess of problems in the first place..... I don't want it to be Lupus.. but it would certainly explain all the problems.. my family doc says it is... she is certain he will as well... soooooo... Yes.. Mam.. looking for the GOOD DAYS!! I recommend that you look up anything you are curious about on the net.. I have takend pictures of things that happen... rash on the face.. swollen joints.. all of these things.. because you know murphy's law.. when you go to the doc.. you will look and feel fine.. my doc recommended i do it.. and so i have a pile of stuff for him on my visit. Good luck with your diagnose... we can make it.. if we can get the right tools to help us make it.. and we have to have a doctor who will give us those tools!
finally some answers....my ana was negative after being a strong positive....GRRRRRR.....my symptoms have not eased up to much....my rash is gone....but joints are still swolen and red and my gosh the brain fog is terrible and my colon and kidneys are killing and have had protein in my urine....but the rheume i went to said I dont have lupus.....GRRR GRRR......i also have the tingleing and pain in my feet and hands and being treated for that also.....i feel like i am going crazy ....can't seem to find a doctor who will listen.......my gp diagnosed me and is treating me with plaquenil among other meds....but since my ana came back negitive this time he doesnt have much to say.....I just want to crawl in a hole and cry........I am miserable......PLEASE HELP :cry:
see my reply to your other post :lol: