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Posted By : directrpep - 12/28/2007 9:19 PM
Hi everyone,

my ana test came out positive at 1:640. I then went back to the doctor and took more tests. The results were again 1:640 but negative for all possible diseases for autoimmune.

Is this a known thing to happen? Why is this?

Posted By : AlwaysRosie - 12/28/2007 9:28 PM
Hi directrpep!! Welcome to the forum.

Yes, the ANA is pretty fickle. It can go positive and then negative again and the other anti-body-specific tests can all be negative. This does not mean you do not have an autoimmune disease but it is likely that you don't have systemic disease (organ and blood involvement).

There ARE those with lupus who have negative ANA . . . but your recent test is just a "slice" of your life, it is just a glimpse and just one indicator. There is a link at the end of my signature regarding "4 of 11 criteria" for diagnosing lupus. The doctor will look at lots of indicators to decide what is going on.

Lots of us have taken many years and several doctors to figure things out. He'll watch you over a course of time. He should be treating your symptoms though. How are you feeling?? Has he got you on a treatment plan for your symptoms??


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted By : redrose77 - 12/28/2007 9:57 PM
My blood work for antibodies is negative except for one test which is very low positive occassionally. Ironically I have several AI diseases. I was told I could not possibly have an AI condition because my blood work was neg until I found a rheumy who doesn't think blood work is the end all be all. Heck those tests can vary from lab to lab and day to day.

I suggest a second opinion from a rheumy who specializes in lupus.

Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone

Posted By : directrpep - 12/28/2007 10:20 PM
Hi AlwaysRosie,

Thank you. So, are you saying that because my tests came out positive both times (1:640), but negative for other AI diseases, then i still most likely have an autoimmune disease? Is this most likely Lupus? Or is it possible that I don't have anything at all and just a positive ANA test?

Sorry, trying to understand if it is possible to have positive ANA tests at a 1:640 level yet still not have an AI disease.

I do not have any signs. I mean, I am always cold, i know that. I get sick quite easily (like the cold, flu) if I am in the cold too long. I have tonsiliths which I was thinkng about getting my tonsils removed because of that. Other than that, I am OK. I don't have any other problems.

Thank you.

Posted By : mom46 - 12/28/2007 11:08 PM

Hi Directrpep,

   I hope you get the right answers soon. We all know how frustrating it can be to get a final diagnosis. Sometimes it can take awhile. Are you taking any medicines right now? I hope your doctor will stay on this and at least treat your symptoms until you get the correct diagnosis. Please keep us updated and take care. You will be in my thoughts and prayers.


Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Posted By : AlwaysRosie - 12/29/2007 3:33 AM
Hi Directrpep,

Actually . . . you received non-information from me. I'm sorry this is so frustrating. If you don't have any symptoms . . . I would enjoy your life and not worry about the ANA. Many people have + ANA and it just doesn't amount to anything. Your numbers are very low too. When an ANA is + there is also a pattern. The pattern can give the doctor some information as well. But DO hang on to your copy of each blood work that you get and keep a file. It may help later when a pattern starts to emerge. But really, you could have a high positive ANA and have no symptoms, in which case there would be no need for treatment. Check out that link I suggested and you'll see that even if you had a high positive ANA and symptoms, you would need 4 criteria to be dx'd with lupus.

Watch what happens when you are exposed to sunlight. Most of us (people with Lupus) either get a rash from the sun, or we have an increase in symptoms (a flare). Some are so sensative that florescent lights affect them. REALLY . . . enjoy yourself and don't think about that ANA again unless you develop pain, fatigue or other symptoms to go along with it.

Sending you some hot tea and a big hug!!


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted By : directrpep - 12/29/2007 5:44 AM
Hi AlwaysRosie,

Thank you very much for your reply. I feel a lot better. :) So, 1:640 is not that high? What is high then? I will continue to check in with the doc. I did look at the link you mentioned and I did not have any of those symptoms.

Many thanks again. I really appreciate it.

Posted By : BumbleBee1 - 12/29/2007 9:36 AM
It's the symptoms that define the disease  with the bloodwork backing them up. ANA is not specific to lupus or  autoimmune disease of any sort.
An ANA of 1:640 is high enough to indicate lupus or a similar autoimmune connective tissue disease, rather than the other autoimmune diseases such as thryoid  which may also happen to have an elevated ANA assuming  there are any of the relevant typical symptoms.  Other diseases tend to have lower levels.
ANA is not diagnostic of other sorts of diseases but it is diagnostic of lupus, meaning that it is one of the many diagnostic criteria.
There are very few specific signs of lupus; two antibodies: anti ds- DNA which is found in  maybe 50% of those who have a lupus diagnosis and is regarded as specific but can occasionally be found in a few other diseases, and anti -Sm ( Smith) which is regarded as 100% specific but only 30% of those with lupus have them. These antibodies can be present without disease although a person with them is at higher risk of developing SLE down the line.
High ANA can be found in the healthy close blood relatives of people with lupus.
The other specific lupus symptoms are skin and kidney biopsy findings. Lupus skin is found in about 30% of those presenting and a kidney biopsy isn't done unless there are signs of kidney disease in urine and blood. Lupus bloodwork can be present without any disease and lupus can be present without any relevant blood work at all, but that is very unusual indeed especially for none to appear within a couple of years of diagnosis unless the patient has been receiving effective treatment.
Always being cold could be a sign of thyroid problems. The ANA could result from chronic infections. A good indication of immune system problems could be complement testing which could reveal complement deficiencies that might account for chronic infections or be low because of them - chicken or egg scenario.

Posted By : emmi - 12/29/2007 9:31 PM
Hi Bee,

Your information was vvery helpful. It contained some information that I was not aware of. Can I ask where you got your information from? Thanks very much.



SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Posted By : Gidget^ - 12/30/2007 6:11 PM
It took two years of being positive before my Anti dsDNA was positive. Give it awhile, monitoring your ANA and you'll probably start to see a difference in the other lupus tests.

SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06, Enchondroma on my skull 11/07
Plaquenil, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Pepcid, Folic Acid, Loratab ,Percoset, Toradol
There is no psychiatrist in the world like a puppy licking your face.

Posted By : directrpep - 12/30/2007 6:37 PM
Hi everyone,

Thank you for all the feedback and comments.

I was wondering, what type of doctor should I see now? I have my regular doctor and she told me that she has a collegue that has had a high ANA result for the last 20 years and nothing has come of it. She says we will keep monitoring things but I would like to see another doctor. How do i go about finding one that specializes in this? Is there a directory of some sort?

Also, i was looking at the X-PLAIN presentation on lupus and I see that there is a drug induced one. Now, I was taking Zantrex for awhile. I mistakenly didn't take it with a lot of water sometimes and I would get these red rashes and have to itch like crazy. But it was a result of the zantrex. After a couple hours it would be gone. Could this in combination with my high level of stress job (working usually 14-16 hours a day) an explanation for the high ANA results?

Before my test was taken, I had stopped the zantrex only about 1-2 weeks before.

Thanks again.

Posted By : PattyLatty - 12/30/2007 7:56 PM
You should definitely be seen by a rheumatologist, and especially one who specializes in lupus. I can't believe that your family doctor hasn't already referred you. Why did they take the ANA test anyway? You must have been having symptoms or they wouldn't have ordered that tests. When my completment levels scored low my rheumyt finally gave me my definitive diagnosis. I suggest that you find a rheumy who will take the time to answer all your questions because you really shouldn't be in the dark. There's a great book but the name eludes me. If someone else out there remembers it, would you please let direcrpep know the name? Is it Wallace? It's on the Healing Well list of books.

Good luck getting to the bottom of things.


Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Posted By : directrpep - 12/30/2007 8:07 PM
Thanks Patty for the response.
Actually, i went to the doctor for just a simple check up. Nothing in particular.
I had normal blood work done and my liver test came our abnormal (ALT). It was kinda high.  So, when I called the office to get the results, she told me that it was high and wanted to see me again to run more tests.  At this point she ran a bunch of things which included the ANA test.
When I called, she told me about it and informed me about Autoimmune Disease, etc.  I went in to see her and she asked me questions about any possible symptoms. Everything was no.  I mentioned the Zantrex use and being cold and usually having a low body temperature (97.6 is my usual temp). 
I went back in and had more tests and one was for Lupus.  She called me and told me that all was negative and that we would just continue to monitor it. That's when she informed me about her colleague who had a high ANA like mine (1:640).
Question...if your antibodies are the "team" that is supposed to be fighting bacteria and viruses and normally you strengthen your immune system by being healthy, taking vitamin C, etc...doesn't this negatively affect you if you have Lupus/AI, because you are strengthening the team that ultimately is hurting you?
Trying to figure this whole thing out.

Posted By : AlwaysRosie - 12/30/2007 9:17 PM
There are a few things we do avoid. The sun (increases immune response), immune boosting meds, immune boosting foods (alfalpha sprouts) and estrogen containing meds. I'm sure others here can add to that short list, but that's it in a nutshell.

Yes, a rheumatologist is the lupus specialist unless your have organ disease, and then he may refer you to specialists when necessary. Make sure (because you are cold) that you have your thyroid checked. That was likely part of your initial "well checkup" but do make sure.

Drug induced . . . . shows in other bloodwork, so your doc should have picked up on that if she thought of it. More info at . . . link in my signature.

If you aren't having symptoms, though, I'm not sure I'd do any more than read up on things so you know what seemingly innocent symptoms go with this mess. Links at the bottom of my signature will help you get a crash course.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted By : directrpep - 12/30/2007 10:23 PM
Thanks again for replying AlwaysRosie.

what about vitamin C? Or blueberries? CLA? things like that? My apologies for being ignorant. I am just doing one of the main things that all the Lupus and AI sites are telling me to do...which is to learn as much as possible. :)

I am looking for a rheumatologist now to make an appointment with ASAP. What kind of doctor should I see to figure out if it is potentially an organ disease? I want to get this figured out as soon as possible and take any tests that can help narrow this done. My general doctor is not sounding too concerned and saying we will just monitor it, but the last thing I want to do is assist in this progressing by doing things that could possibly hurt me or worsen it.

Thanks again.

Posted By : AlwaysRosie - 12/31/2007 2:51 PM
Hmmmmm . . .

The antioxidents in the fruit are great. Eating healthy is one of the best things you can do for yourself. You can Google "lupus nutrition" and find some good stuff . . . but don't buy into any commercials and people selling stuff.

The rheumatologist will do the overall assessment and treatment unless something is way wacky and then they refer you to a specialist for each such issue. But, again, if you are symptom free . . . I would enjoy your ride. . . They just don't start any treatment unless you have wacky high blood work or symptoms. So, easy for me to say, I would learn a bit more about things to watch for . . . and then enjoy your health. Its hard to post everything here . . . Lupus is a study of medicine in its entirety because it can involve any part of the body *phewwww*. But if you check out the links I've given you in my signature and then do some searching on interesting aspects (like nutrition), you will have educated yourself. I just want you to be aware of some odd symptoms like: suns sensitivity, mouth sores, rashes, extreme and prolonged fatigue, joint pain, limbs going numb, hair loss, brain-fog, depression, feeling frequently flu-like w/o actually getting the flu (I have all of these but NEVER realized they were related until I felt too awful and started looking for help). Lupans tend to live with a lot of symptoms that they brush off as "normal" because we don't realize that everyone else doesn't deal with all of this.

Look at the Lupus Criteria . . . that will give you the gold standard for diagnoses, even w/o a +ANA. Link is in my signature.

I hope this helps. I know it is a bummer to be in limbo like you are . . . but you'll look back later and want to have enjoyed that healthy time if you ever do get really sick. Don't let all of this scare you. It unravels bit by bit and MOST people with a +ANA are absolutely healthy.

Actually . . . your liver numbers is what I would be checking out. If your doctor hasn't scheduled you for a follow-up, make sure to do so w/i a few months to make sure those numbers are holding or going down.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Posted By : tear - 4/7/2011 6:50 PM
Hi ive have a postive ana of 5150 i am told that is very high..all other test are negative. i have fatigue muscle aches, hair loss, my joints hurt. iget hives on my face and neck. i have good days and bad but i feel latley its more bad days. i go to the rheumotolighst but the appointment is in 2 months...??i would like some answers..anyone know anything??

Posted By : tfofd - 4/8/2011 9:29 AM
I don't have the time to read through all the responses, so if I repeat something that was said, I am sorry. An ANA test itself is meaningless if you have no symptoms. Very unlikely anything is wrong. Doesn't mean it can't happen later on. Antibodies won't necessarily show up when you first get sick, sometimes it takes awhile. But your not sick, I would not fret unless I became that way. Have it rechecked at a different lab to make sure it's not a false positive.

Posted By : tear - 4/8/2011 11:22 AM
Well i do have alot of symptons its been going on for about 10 years, my muscles hurt my joints hurt my hair is falling out, my hands arew so swollen i went up two ring sizes. I break out in hives on my face ajnd neck.It always came and gone but know i feel like the bad days are more than the good days.I  am going to the rheumotolighst but at the end of my.I was positive for lyme disease but dont ever  recall getting a tick and bitting me.took antibotics for that but still feel horrible,my doctor seemd=s to think i have some connective tissue disease..

Posted By : tfofd - 4/9/2011 4:40 AM
I'd agree with your doctor on this one. Your symptoms could be related to connective tissue disease. Did your doctor just run the ANA titer or did he try checking for autoantibodies too? Sometimes doctors skip that part of the test, I don't know why. If it's positive, they should go on and check the rest of it. I know 2 months seem like a long time when your feeling bad. I've had to wait almost a year to get in, and finally am this month. I'm counting the days. 9 more days, yay! Problem is I missed my first appt, where my mind was so screwed up on Chantix. So I had to find a new doctor. Getting a little anxious at this point. Just take it easy until you get in to see your rhematologist. Maybe they'll be able to help you feel better. Like having Lyme isn't enough, you have to deal with this.

Posted By : tear - 4/9/2011 11:01 AM
all i know is my ana was 1:5150 and he said it was very high.ive been going through i guess what you cal flare ups for 10 hair is coming out,Its very frustrating what is a pattern? I think mine said centromere(discrete speckled) what does that mean...

Posted By : tfofd - 4/12/2011 8:12 PM
It could be indicating crest syndrome.

Posted By : pollito_775 - 5/16/2011 3:11 PM
Hi im new here .I am very concerned because my daughter(10 years old) got an ANA test done and the results came back positive but the doctor told us not to worry because the results said that it was .80 he said that was normal.Is it possible to have positive results and not have to worry?

Posted By : couchtater - 5/16/2011 3:55 PM
Do you mean 1:80 titers?
That's a very low level almost borderline. I wouldn't worry unless she's having problems.

Posted By : mandeloo - 5/17/2011 5:43 AM
If 1:80 is low then what's high?

Posted By : tear - 5/17/2011 11:30 AM
Mine is 5150, i am told that is extremly high i go to the rhemotlioghst on the 27..

Posted By : pollito_775 - 5/17/2011 12:52 PM
thats the problem the doctor had her have the ana test because she is having pain in one of her knees without having injury and the results say positive but he says not to worry because shes ok.I think i need a second opinion.The results say .80 but not sure if its .80 titers

Posted By : couchtater - 5/17/2011 2:45 PM
My titers is 1:360.

I'd go for a second opinion.

Posted By : pollito_775 - 5/17/2011 3:25 PM
Thanks alot for your help,Ill be getting a second opinion.

Posted By : mandeloo - 5/17/2011 5:03 PM
I've never seen 5150 titer is that being measured in different units?

Mines 1:40 and was considered positive. It's a good thing too because then they caught high titer of anti-RNP in my blood. I would have never known.

Posted By : outofmyhead - 6/17/2011 1:24 PM
Hi everyone, I just received my first results and I don't know how to read it. My doctor said that I don't have lupus. The ANA Screen shows 526.7 H, ANA POS, ANA Interp Negative. My doctor told me about a woman that had a high ANA for 8 years then she got cancer and died. He said I probably have tiny cancer cells that are too small to see right now, and my body is trying to fight it causing the ANA to be high. He said to be sure to have all tests done like paps, mamograms and the colon thing.

Posted By : Lynnwood - 6/17/2011 1:38 PM
Out Of My Head,

What kind of doctor told you that? Do you have any symptoms that lead to the tests being done in the first place?

Lupus and many other auto-immune diseases are diagnosed by a rheumatologist, not a GP or internist. Other doctors, such as the one that made up this cancer story, are not qualified to diagnose or treat lupus.

Because you do have some positive ANA results, I strongly suggest seeing a rheumy as soon as possible. I'd also be interested in any symptoms you might have.

In my personal opinion, the doctor you saw is a QUACK. There are only a very very small number of cases where ANA is linked to cancer, and no one should be telling you these kind of horror stories. It is much more possible that you have an auto-immune disease - and that leads back to the rheumy again.

ANA is NOT a test that says "YES" or "NO" to *anything*. It suggests something in the auto-immune area, but it can also be raised due to some medication you are taking, or some people just have low positive ANA for no known reason, etc.

Symptoms are very important - follow up and see what's happening. Keep us posted.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Posted By : couchtater - 6/17/2011 2:32 PM
He does sound like a big quack!!
Get away from him!

Posted By : outofmyhead - 6/22/2011 1:03 PM
I was sent to him for headaches. I don't know why he had the test done. That was the first time I went to him. My family doctor looked at me crazy when I told him about the test.

Posted By : Lynnwood - 6/22/2011 2:00 PM
1:320 is higher than 1:80

1:640 is higher than 1:320

when the second number is higher, it's higher
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Posted By : krispy - 6/26/2011 6:03 AM
Hi- I'm new here. My daughter (13) has had high ANA titers for two years (>1:640, 1:320 and now lower 1:80, speckeled pattern). She complains of muscle aches, GI issues, is very sensitive to the sun, has red cheeks (but everyone says it's not mylar rash -just keratosis pilaris), is fatigued easily, has occasional mouth sores (but they don't hurt), headaches. Went to pediatric rheumatologist who ran tons of tests, all negative except ANA. She gets better and then (usually in spring) gets much worse. Went to an endocrinologist as Hashimotos thyroiditis runs in our family and she is always cold. Labs normal but was put on a low dose of synthroid - she improved a little at first, but now is having trouble again (thyroid labs stable and fine). I am convinced she has SLE, and it gets worse in the summer due to sun (though her rash looks better in the summer). Also gets worse after sinus infection or other bacterial illness. Question: How would knowing she had lupus change her life? That is, she takes ibuprofen for pain, gets rest when fatigued, wears sunscreen, eats healthy... If we had a real diagnosis would they be able to do any more for her medically (I'm kind of opposed to steroids in kids unless it's a last ditch thing). Is there a risk to having low level disease and occasional flares without a diagnosis and seeing an immunologist/rhemuatologist? I'm tired of running her to doctors (dermatologist, allergist, rheumatologist) for them to run labs and tell her she is fine when she feels lousy, especially since she doesn't complain of aches and pains all the time (it isn't psychological -she's very happy, a good student, active and involved, nice friends,...). What would you do?

Posted By : Bsime - 6/26/2011 10:44 AM
Having a diagnosis and treatment is very important to controlling lupus or any other AI disease.  There are many treatments other than cortocosteroids although they are often used because they are fast and effective.  A second med will usually be introduced in order to taper off steroids.   You should not ignore your daughters symptoms which seem to indicate lupus.  Lupus can progress into something much more severe if left untreated.
Check out the resources under Learn about Lupus at the LFAI site.
If treatment is successful your daughter might see some or all of her symptoms disappear but no one can predict that.  Not getting treatment is risking getting worse and lupus is a complicated and sometimes devastating disease.

Posted By : couchtater - 6/26/2011 11:34 AM
I have a positive ANA but my inflamatory markers are low and my Rhuemy told me I had lupus based on that and all my symptoms.
I take planquenil and mobic for my symptoms. It really helps.

Posted By : faithwalk - 7/23/2011 6:32 AM
I feel great, no symptoms. I went into dr. had some thinning "personal" hair. (I was told later thinning hair often happens when you get into your 40's). The dr. ran an ANA it came back 1.320, 5 weeks later I ran it again 1:160. 3 months later it is still 1.160. I waited 3 months hoping it would go down on it's own, it didn't. I am trying not to FREAK out. I've read such scary things on-line. I feel healthy. I'm afraid of going on medicine to get the numbers down when I feel so good. All meds have side affects. My natropath dr. says not to worry about it he'd just moniter the numbers and make sure they don't go up. He insists that auto immune medicine will create other health issues for me. My medical dr. is alarmed and simply said I need to go have "extensive testing" to see what is going on. The rhem I want to see can't get me in until the end of Oct.

Any thoughts....I am fighting this scared, want to cry feeling...I have always been a health conscious person.

Posted By : Bsime - 7/23/2011 6:35 AM
Listen to your medical doctor. 

Posted By : faithwalk - 7/23/2011 1:33 PM
I'm curious what is the importance of going through a battery of tests, with end result being medicine, when I am feeling so great? I truly am feeling terrific. No symptoms of anything.

Posted By : couchtater - 7/23/2011 3:13 PM
A stitch in time saves nine.

Have you ever thought it's doing hidden things to you?

Posted By : faithwalk - 7/23/2011 3:19 PM
i cannot get into rhem until end of Oct, (i did schedule an app). I really don't want to have unnecessary anxiety for the next 3 months, thanks for spiking it.

Posted By : Bsime - 7/23/2011 3:24 PM
You do have symptoms just not clinical ones.  I had low platelets and mild anemia fo 15 years before clinical symptoms appeared.  My docs had already guessed that I had lupus and were prepared to treat me when I began to flare unlike many who take months or years to get a diagnosis and effective treatment.  It is important to get aggressive treatment early in the initial flare to successfully control your immune system.
If you are diagnosed and still asymptomatic (clinical) you can always decline treatment at that time but you would know what you have.  Although there can be dire side effects most of us experience mild ones and lupus can be a life threatening disease.  I would rather risk possible side effects than risk death from lupus.  Not all cases are that severe but many are particularly if untreated or undiagnosed for a long time.

Posted By : faithwalk - 7/23/2011 3:28 PM
BILL, REMEMBER I MAY NOT EVEN HAVE LUPUS! I do not have a single lupus symptom. Trying to scare people with "death" is unnecessary!

Posted By : Bsime - 7/23/2011 3:28 PM
If you don't want honest answers from experienced patients you shouldn't ask the question.  I run a support group and talk to patients almost daily about lupus and myositis diseases and tell it like it is in order to help them through diagnosis and treatment hell and coping with a serious of chronic disease that is treatable but not curable.

Posted By : faithwalk - 7/23/2011 3:38 PM
How about this response:

"I'm glad to hear you have an appointment scheduled. Don't try to stress yourself out while you wait for it. It would be good to catch things early. I'm glad you are feeling good. I hope you get good news!"

I think a little empathy mixed in would be nice. Just for future new members who post.

It's comparable to a dr who has bedside manners and one who doesn't. Just saying...

Posted By : couchtater - 7/23/2011 7:41 PM
Sorry if we scared you, but autoimmune diseases are nothing to shrug off.
We're frighten, too.

"It's better to light one candle than to curse the dark. But sometimes the Devil keeps sitting there blowing it out."

Posted By : aimsgirl16 - 7/23/2011 8:17 PM
Do you know what your other blood work is? How are your blood counts, c3, c4 levels, sed rate levels? There is something that makes the doctors suspect a AI disease other than a positive ANA. You also could be someone who has a positive ANA and no other symptoms. That is sometimes seen in healthy people.

Bill is not trying to scare you but wants you to take this seriously. He has been one of our most informative/helpful members and i appreciate everything he does to help out on here. When you come to a lupus forum asking why, remember you are most likely going to hear responses based on our personal stories and what we have seen to be true. Also, try not to worry about this for the next 3 months. If you are feeling so good...and have no symptoms, why worry and cause the anxiety???
Lupus Moderater
Myfortic, Prednisone, carvedilol, Eliphos, furosemide, sodium bicarbonate, Celexa
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram,

If God brings you to it, he will get you through it!!

Posted By : Taina - 9/7/2011 1:07 AM
Going back a bit to the first few posts in this thread, I also had ANA of 1:640, I haven't had any symptoms (touch wood) but I do have Coealiac Disease, and my mother has Lupus, so I'm hoping that explains it...

Posted By : cured4real? - 9/7/2011 9:58 AM
Hi directprep--
I had a similar problem years ago. other diseases besides lupus and the related autoimmune diseases can cause your ana to be elevated. Liver problems can be one. The liver can get damaged from meds, environmental, lifestyle, lots of things and the liver can regenerate. As part of trying to solve this, you might make sure they ran a screen for common infectious diseases. My false positive to hep c antibodies has helped me and my family get treated for our mild autoimmune liver disease. sometimes fixable problems left undone can damage the immune system. My rheumie says this is secondary autoimmune disease, autoimmune disease that is a part of some other underlying disease or condition.

Also going to a place where they run really sensitive tests, like Mayo or a university or other large medical center, can sometimes help, sometimes not, but instead of delivering a positive or negative, Mayo for examples gives the actual numeric level so if you are one point below negative, they can watch or retest.

Also, me being on plaquenil for autoimmune disease covered up my "positives", as will steroids, even given many weeks ago. Nice to know the plaquenil is working!!! When I went off it, oh what a mess.

My doc gives me a lab sheet and tells me to get it in a few months. When I feel the worst, I usually get it so it reflects what is really bothering me. The values seem to go up and down pretty fast. I had a positive AMA off plaquenil for a few months, within being back on it a month and a treatment of prednisone for a severe "allergic" reaction--i think from being off the plaquenil-- I had a negative AMA, then the doc told me he thought I really had a positive LKM1 that is shining and making the AMA look positive. My ANA is always positive and outshines some of the other markers they are trying to read, making it difficult to diagnose me, I'm told. These tests are fluorescents and subject to interpretation by whomever reads them, different labs have their own "way" of reading them. They tried using slit lamp but the ANA was too positive for them to be definitive.

It sounds like they are still looking and that is good.
Love, Marji

Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes

Posted By : wurlwind1 - 9/7/2011 4:43 PM
I fear that I may have some kind of autoimmune disease, but not sure what to ask my doctor to test for.  about 5 years ago, I went to the doctor due to my hands and feet drawing up and painful.  My ANA was high and was referred to a rheumatologist.  Couldn't get in for 8 months, by then no symptoms.  Since then have been back many times for feet drawing up, painful, painful joints and chest pain.  Doctor sent for a stress test - all normal.  Then she chalked it up to stress.  I have aching joints after sitting for awhile, fatigue, on a daily basis.  In the past year been to the doctor 3 times for my nose- and was treated for shingles or staph infection.  The second time was given blood test and ANA was high again and then was tested for lupus - negative.  The last time I went for my nose - one evening my nose just began to hurt - felt like I had been punched in the nose - right on the bridge of my nose.  It slowly became much more painful, swollen and red - again was treated for shingles and staph and again chalked up to stress and was offered zoloft.  Not sure where to go from here, but feel like something is not right.  I am a high strung person and do worry alot, but have been like that my whole life and don't believe these symptoms are due to stress.  However, it does seem like symptoms are much worse around my menstral cycle and with high stress.  Any suggestions.

Posted By : cured4real? - 9/7/2011 9:34 PM
Shingles and staph seem to cause other problems with the nervous system. I have tight muscles and get prescription Voltaren muscle relaxer gel for it, but also use an over the counter herbal gel made with Arnica which works well. I have alot of spinal problems. I would be sure to get copies of the readings of any xrays or mris or cat scans you've gotten and recent labs and read them. If you see something that sounds like it might be problem, talk to your doctor about it. Doctors these days seem to act like if we don't know about a problem, then it will magically go away, but we still feel the symptoms and it causes problems.

The main thing is not to worry if you've been treated for staph and shingles especially as it will make you sicker. Since you have these "infectious" disease diagnoses, then at least you should be able to see an infectious disease specialist for confirmation and further checking.

My mom had mrsa, I don't know how that works, they found it before some surgery she had, and it gave her all kinds of funky little symptoms like nerve twinges and pains and gi and sinus and basically whole body feeling lousy, until she got treated. Her whole immune system was breatking down and they were giving her cortisone for autoimmune gi disease and it made the mrsa worse, so that was a problem.

Lupus isn't the only autoimmune disease, sjogrens acts the same, ra can act the same, autoimmune liver disease, all the autoimmune diseases are like versions of disease that overlap in symptoms.

Seeing a woman's well-ness doctor might help if its worse around your cycle. They usually run alot of sensitive tests both on the nutritional and hormonal/endocrine side and can really help with making sure your hormones are just right so you are having a normal time of things.

Your family doc should be able to find you something to chill you out, maybe the zoloft is good? I'm allergic to it so its out for me. But there's alot of other meds. In your case, chilling out is a real medical issue as these diseases are triggered by stress.

My mom had staph in her nose, I guess its the most common place for it. If you don't have a definitive diagnosis for the shingles and staph, I would try to see an infectious disease doc to get one and maybe better treatment. My mom's immune system bounced back after the mrsa was treated and the shingles haven't returned since. I got in to a rheumie because my ANA was high and I had a positive rheumatoid factor (for rheumatoid arthritis). The rheumie retested it and it was negative by then! But I have obvious signs of autoimmune disease anyway so I got diagnosed with sjogrens and treated.

I think sjogrens makes the nose dry as well as the eyes and mouth, and I take a medicine to give me more saliva called evoxac. It seemed to help my chronic sinusitis a little bit as well. Have you seen a rheumatologist? If it were me, I'd go to infectious disease first, then rheumatologist. And I'd get a nasal swab done that confirms the staph if it hasn't been done first off and see what they can do to try to get rid of it completely. I know they gave my mom a ton of antibiotics, not just one.
Love, Marji

Meds--Plaquenil, Evoxac, Metformin, HCTZ, HRT patch, Voltaren gel, Klonopin, Ultram, Albuterol, Questran, pancreatic enzymes

Posted By : sydbean - 9/28/2011 4:55 PM
I am new to this whole forum thing...but have been having some issues lately and came acroos this. I have a hx of some anxiety problems, hashimotto's, and hyatal hernia. Lately, I have been experiencing some pretty extreme fatigue. I tend to brush it off as it being related to my thyroid condition (which it very well could be) but my TSH has been quite "decent"...currently a 5.3. I saw my GP due to this fatigue, muscle fatigue in my arms and legs, that has come on gone only a few times, for a short amount of time and is usually remidied by drinking a gatoraide or something. He did a whole bunch of blood work. Blood counts, liver function, kidney function, sed rate, the inflamatory test, lymes, all are great! The only "off" thing is that I currently have an ANA of 1:160. Is this alarming? Is this to be of concern? He is running more in depth auto-antibody blood tests (not sure of the names) and said depending on those results, will send me to a rehumatagolist (sp?) But he expressed that he is not concerned and neither should I, however, he still wants to run the tests. I have no joint pain, just get tired easily and deal with some day to day anxiety (which can also cause wacky symptoms) What do you think?

Posted By : couchtater - 9/29/2011 5:53 PM
I hate to tell you, but you're going to have to wait for the blood test results. Only the the Rhuemy can tell if it's Lupus or something else.
I know the feeling of limbo, but hang in there. You'll have an answer soon weither you like it or not.

Posted By : sydbean - 9/29/2011 6:56 PM
Yea, the feeling of Limbo is just the worst! Thanks for your reply Joy. :-)

Posted By : mom1111 - 10/7/2011 11:03 PM
Help!  No firm diagnosis yet and frustrated...  2009 - present:  Positive ANA 1:160, C-Reactive Protein 36, CPAP pressure 22, Hashimotos Hypothyroidism, high BP/Chl, extreme fatigue, burning and soreness in extremities in upper thighs and along sides of legs, tingling under feet and hands, soreness and muscle pain in left thumb, bad headaches, not sleeping well at night, persistent muscle tension and stiffness-forearms, thighs, calves, gluts; constant yawning, you name it!  Seeing Rh, PCP, Neu and
other drs.  Rx: Lyrica,Zoloft.. considering Mayo Clinic.. Any suggestions would be appreciated.

Posted By : couchtater - 10/8/2011 6:29 PM
Ask them to try you on plaquenil for the fatigue and aches. It helped me.

Posted By : Ace23 - 10/9/2011 12:55 PM
Hi, I am new and need some advice. I was diagnosed with schleraderma 10 years ago. It presented itself as multiple cords growing in my torso, stretching my skin as it twisted and grew from breast to belly. It went away when I got pregnant. Then, fast forward 8 years...I start to have chronic diarrhea and severe chest pain attacks. Tests are run, and they take my gall bladder out. The diarrhea never gets better, I am put on Welchol. Then, I start refluxing, gradual at first, now I can not swallow food without it getting stuck in my chest. I saw a GI, did an endoscope, found swelling in esophogus and gastritis. I now have severe heartburn attacks at least twice a week, even on meds. My Gi sent me to rheumatologist. He ran bloodwork, all negative except for my ANA, 1:320 with speckled pattern. He said not to worry about it, and all should be fine. I feel stuck with all these symptoms and no one to take me seriously. I am happy that I have meds to deal with this, but shouldn't I push for more tests? Go to an internist? I just don't know what to do, maybe not worry about it, like he said...Thank you for any feedback.

Posted By : Bundt - 10/12/2011 10:38 AM
Hi am new I went to my primary doctor july 2010 an had a ANA screen 1.80 Titer and then went to a Rheumatoid doctor in sept and the FANA 1.80. most of my days are spent in bed because my body just get stiff and my neck constantly hurt. I tried planqenil and it didnt work...Now am on Methotrexate 2.5, folic acid, prednisone 5 mg..A lot of times I wait up with nose bleeds and lay down having them..Am not sure which one of the medicine is causing it but I have another check up with the Rheumatoid doctor this week...also loss of appetite.

Posted By : PJ555 - 11/9/2011 8:01 PM
1:80 I don't think is super high but it isn't normal and I was 10 when my whole auto immune issues began. I was always a skinny little child and out of no where I became HUGE! I was discovered to have thyroid disease. It progressed as I did. I eventually had to have it removed I had Hashimoto's Disease my thyroid weighed a pound and a quarter it was stuck to my ear canals and my vocal cords I felt like hec! Then I always had super duper bad TSH levels I never had regular cycles and I had gone about 8 mths without a cycle and I found out I was pregnant, my dr told me when he came in the room you have the worst case of infertility I have ever seen except for the fact that you are pregnant. That was the first time I ever had a positive ANA but I never investigated it further. I have been symptomatic in one way or another for as long as I can remember but it is official now I do have Lupus and am on Plaquenil and Prednizone for two weeks now hoping for the best. It was mainly found thru a surg that went bad with super duper bad complications that I almost died and it created a flare from what must have been there all along but its here and I am dealing with it. Good luck to you and your daughter

Posted By : yayaharley - 12/30/2011 8:24 PM
Hi there~
I'm new to this also.  I have bad days and I have very bad days lately. I have been having joint pain (jaw, shoulder, knees, elbows, hip, hands, neck, and back) for about 2 years now.  I also have extreme fatigue, lost 48 lbs over a 2 month period in the last 6 months. Lots of hair loss, small sores in my mouth and on my tongue (that come and go) Was diagnosed 2 years ago with "Impingement of the shoulder" (I think that means they dont know what it and diagnosed a couple months ago with TMJ of the jaw(which has not gone away yet).  My husbands company got new health insurance over the last 6 months, so I've been seeing a new primary.  She took blood and said my cholestrol was high, potasium and iron was low and my ANA was 1:640.  She referred me to a RA.  He ran blood work twice and said my ana was still 1:640, but I did not have lupus or RA, that I needed to see my primary about the auto immune attacking my thyroid.  I feel hopelessly frustrated, and like I'm losing my mind.  my primary does have me on pain, muscle, choles, high blood press meds.  But because of Esphogitis (sp?), ulcers, and gasteritis I can not take Ibuprophens, or steroids.  I thought for sure I had lupus....I waited 6 weeks for the results, only to be told NOTHING, but go back to my primary.......ANY SUGGESTIONS????

Posted By : couchtater - 12/30/2011 8:35 PM
Ask your primary to try you out on plaquenil to see if you feel better.

Also see if you need thyroid medicine. It can help if your thyroid is under attack.

Posted By : yayaharley - 12/31/2011 9:19 AM
thanks Joy...I'm willing to try anything at this point! =[

Posted By : Tam Tam - 1/10/2012 2:26 AM
Im just as confused as most people are on this positive ANA ..
After having a total knee replacement at 44, and having lots of joint aches and weak muscles's , my ortho doctor did blood work and told me i had a positive ANA and had Lupus. got sent to my rheumy and extensive blood work showed negative for everything but i have a positive ANA low titer speckled pattern, that was 3 years ago and I was told i had unde. mixed connective tissue disorder. That was 3 years ago, and since then i have lots of hair loss,blurry dry eyes, all my joints hurt and ache all the time, I can hardly put my hands above my head without them clicking out of joint ( best description i can come up with) hips ache and other knee is getting bad. my neck has degenerative disk decease and cervical facet syndrome which i am getting steroid shots in pretty often, my feet at times will get so cold that it takes a heating pad two hours to warm, otherwise i had a hysterectomy that usually keeps me hot and sweaty.
my question is.... i hurt when i first get up in the am, but if i do anything that is strenuous (using a lot of muscles) when getting done, i get extremely cold and start hurting all over so bad that it takes a percocet to get this calmed down, i mean all joints and muscles from head to toe hurt.
I have been diagnosed with fibromyalgia, degenerative disk decease, cervical facet syndrome, IBS, Interistrial cystitis, High blood pressure, and severe arthritis. will i come up with different test results later from what they say now? and do my symptoms go with lupus or any other autoimmune deceases ? I mean can mixed connective tissue disorder cause all these symptoms i am experiencing ?
I was a normal woman with just about No health issues and at 40 having a unexpected hysterectomy and 7 surgeries later.. this is where i have ended up.... I just want to understand what went wrong. Im so tired of having no energy, can't sleep, hurt almost everyday....and all my doctors do is shrug there shoulders when i explain this and write me another pill to take. any advice or answer would be greatly appreciated !

Posted By : PJ555 - 1/10/2012 5:36 AM
It is odd for me I have had symptoms for years and only had a positive ANA one time when I was pregnant. I have AI problems for life and some does my entire family, My mom has thyroid disease, her sister MS my son thyroid disease and type 1 diab my daughter pCOS and Graves disease. I recently had a surgery go terribly bad and now BAM full blown MESS my ANA is now positive and symptoms to match. I am on Plaquenil now and Prednizone but I had gastric bypass 9 years ago and the surg I had make absorption even worse for me than just because of the gastric bypass so it has been a mess. I almost am being told my Lupus is mild but it sure as hec doesn't feel mild I feel like someone forgot to tell me I didn't actually survive the complications for the surgery LOL. anyway I am sure I will make it. I think this whole thing come and goes or just rolls around in stages, the lady who told you to keep ahold of all of your test results is a good thinker because it is going to help in the long run should the two begin to merge the numbers and possible symptoms. Good Luck!
Lupus Hashimotos Thyroiditis (Thyroid removed 1984) Gastric Bypass 2002
Synthroid 250mcg, Topomax 100mg, Lamectal 300mg, Vit D 50,000 mon/thurs, B12 1ml inj once a week, Plaquenil 200mg 1daily then 2 daily alternating, Prednisone (for flares) Valium PRN, Lasix 40mg 2x daily, Potassium,Percocet 10/325PRN, Imitrex inj or nasal PRN, Phenergan, Vyvanse 40mg, Multi Vit

Posted By : Lynnwood - 1/10/2012 7:30 AM
@Tam Tam,

Welcome to Healing Well,

With mixed connective tissue disease (MCTD) you should be getting treatment specifically for that. I *think* the treatment is similar to Lupus, where you'd be on Plaquenil and Prednisone to control the disease and control the inflammation.

MCTD commonly causes:
* joint pain/swelling,
* malaise,
* Raynaud phenomenon,
* Sjögren's syndrome,
* muscle inflammation, and
* sclerodactyly (thickening of the skin of the pads of the fingers)

You might want to start a new thread with MCTD in the title, I think we have some members with that diagnosis who might be able to discuss more intelligently with you.

Or here is a thread with some MCTD discussion

Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Posted By : crazy4info - 8/26/2014 3:09 PM
Hello Directrpep....was reading comments. I have the same issue as you. My ANA is also 1:640 with no symptoms. BUT, when I first found out I had high ANA, it was from my first physical two years ago. Was 1:320. Went to specialist who wanted to put me on a very pricy compound drug. I refused because he could not give me a diagnoses. Test came out inconclusive. Then I lost my insurance because of pre-existing condition. Now with Obamacare found that my ANA is still high with still no symptoms. Did my own research and found that Raynauds syndrome can cause a high ANA. My mom had Raynauds syndrome and I knew I had it also. Just means when I get extremely cold my fingers and toes turn white and feel numb.

So my question to you is, did you learn anything else or did you develop any symptoms?

Post Edited (crazy4info) : 8/26/2014 3:13:54 PM (GMT-6)

Posted By : Lynnwood - 8/26/2014 3:34 PM

The person you are addressing hasn't been here since about 2007.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

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