ANA positive for Lupus

Posted by hunterhadley03 @hunterhadley03, Jun 15 7:20am

So I had blood test done and my ANA test came back positive. The test results came back ANA TITER # 1 abnormal 1:80
ANA PATTERN #1 Nuclear, Speckled abnormal
(Ac 2,4,5,29) Speckled
ANA TITER # 2, 1:320 HIGH
ANA PATTERN #2 Nuclear, nucleolar
(AC- 8,9,10: Nucleolar
What does this mean???
My doctor said all other test came back normal but this one. She said I have Lupus!! I don’t understand and I’m scared and worried.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I would get a 2nd opinion. I also only had high ANA titers- crazy high- but none of the other labs matched- 2 diff rheumatologists said that 2 ANA tests that return high without other labs to back it up does NOT mean necessarily lupus. Could be drug induced or any other number of conditions causing inflammation to score that high. In my case, numbers were in the mid 600's. So don't worry about it- just live as clean as you can.

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Profile picture for marymaryoregon @marymaryoregon

p.s. please go to a rheumatologist and say: my symptoms are not being managed by my current plan of care, what are we going to do to get my symptoms under control? And if you are not the provider who can prescribe the treatment for me, who is that provider?

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Thanks for the chuckles, I should try to be more amused but I'm sick of it all, I have been trying to get a diagnosis for decades and at almost 77 years old I give up ever knowing what happened to me, I've been diagnosed several times but then it morphed into another problem. I know I have Autoimmune disease but the anxiety of not knowing and people not believing me, that's hard for me. I am on Plaquenil but after trying Sulfasalizine I was so sick I was hospitalized, then tried another injectable drug that caused Afib and had to stop. My mom, niece and sister all had or have autoimmune disease.

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I’m in the same boat: 72 and long history of autoimmune issues but no definitive diagnosis. Autoimmune hearing loss 30 yrs ago, joint pain/swelling, skin rashes, vertigo, GI issues, arthritis, and now uveitis; it’s exhausting and also limits what I want to do; best wishes to you in your ongoing battle! Just know you are not alone.

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My doctor said you can have all the Titles of Different Autoimmune going on... but in the end all we are doing is treating the symptoms. Focus on the symptoms if you can with your family GP and hopefully you find a balance.

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Profile picture for researchmaven @researchmaven

I have had lupus for over 25 years. It is mostly of the skin variety, and that means no sun, but it also affects my gut and makes me tired (and more). The tiredness has gone away with a Methylfolate supplement. It is crazy that it helps so much, but there is information out there that it can help.

Just getting rid of the fatigue would be great, no?

Note that the brand I take is Biotics Research Methylfolate Plus. I cut the pill into eighths (I have a great pill cutter) and it is not a mega dose. Check with your doctor to see if you can take it. I also take a B12 supplement as my gut doesn't like meat or fish anymore (and most other foods, but I have figured that one out) and I think it helps the Methylfolate work. Like Warner68 says, if you can figure out some accomodations for your condition, things can improve. Just Google the heck out of the topic and see what makes sense to try. Good luck!

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My wife has been diagnosed with lupus and Sjögren's Syndrome for about two years now. Her body pain and tiredness keep her bedbound most of the time during the flare-ups. The inside of her mouth also inflames. This makes eating solid food difficult. Protein shakes sustain her and help maintain her immune system during these times. However, everything has its trade-offs. The high protein causes her constipation. I am hoping that adding this Biotics Research Methylfolate Plus and a B12 supplement will provide added relief. We will contact her rheumatologist.

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Profile picture for janeinnc @janeinnc

I’m in the same boat: 72 and long history of autoimmune issues but no definitive diagnosis. Autoimmune hearing loss 30 yrs ago, joint pain/swelling, skin rashes, vertigo, GI issues, arthritis, and now uveitis; it’s exhausting and also limits what I want to do; best wishes to you in your ongoing battle! Just know you are not alone.

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I would be interested to know more about your autoimmune hearing loss, I am headed to the ENT tomorrow morning to have a tube put in one ear, the eardrum is severely retracted. I have a positive ANA and HLA-b27 and elevated CCP. My symptoms have the doctor thinking along the lines of ankylosing spondylitis, arthritis and/or connective tissue disorder. I've had serious issues with my ears for years, they now think it's related and I am beginning the process of looking into that.

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Ohhh, let me know how it goes w/ENT; I went deaf after fluctuating hearing loss about 25 yrs ago; I have bilateral cochlear implants/-yay! They are great; I’m positive ANA; negative hlab27: Major transient arthritis which fluctuates;
Good luck!!

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Need to find a great Rheumatologist who will listen to you and take a proper history. Finding even a good Rheumatologist is quite challenging, but keep at it until you find the right one for you, as no need to suffer continuously when there is available treatments to help you.

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Profile picture for fairn @fairn

I would be interested to know more about your autoimmune hearing loss, I am headed to the ENT tomorrow morning to have a tube put in one ear, the eardrum is severely retracted. I have a positive ANA and HLA-b27 and elevated CCP. My symptoms have the doctor thinking along the lines of ankylosing spondylitis, arthritis and/or connective tissue disorder. I've had serious issues with my ears for years, they now think it's related and I am beginning the process of looking into that.

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@janeinnc and @fairn. You both have mentioned hearing loss and its possible relation to autoimmune disease. Here is a link to a recent (?) discussion on autoimmune inner ear disease.
https://connect.mayoclinic.org/discussion/anyone-out-there-with-aied/
Be sure to check with your doctors and ask if you should see a rheumatologist.
Have you been treated for any ear problems?

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My email alerted me to new comments and I am stunned to see the comments on hearing loss.
Approximately 45 years ago, I almost went deaf. Noticed I was losing hearing, went to dr after dr who did no testing, why, or how, and did nothing. Then the dizziness, vertigo, emesis started, first infrequently, then daily. Drs gave me pills, patch, etc, then totally abandoned me. Once the neurological symptoms started and more drs without any treatment except “bandaids.”
Almost bedridden, as walking, stairs, too difficult, now the locomotives, plane engines move into my ears, and cried as no help from any “top specialist.”
My sister happened to stop by and saw how bad I was and called the neuro dr she worked for who set up any appt with his colleague in another state for me. My sister traveled with me to see dr who was by the way, furious with all the drs I saw, and no treatment. This dr stated I had the worst case he ever saw of Meniere’s Disease, began treatment and put me in the hospital, but my insurance would not cover stay, so I made the 6 hr round trips to his office weekly as he was trying to restore hearing in left ear which I only heard at 30%, (per excruciating testing), the right ear was dead due to not treatment of autoimmune disease. After 2 years of treatments, regained another 30% for a total of 60% hearing in left ear total hearing. At the time no hearing aids or cochlear implants available. This dr then sent me to a super smart young rheumatologist/immunologist who further diagnosed me (also with help of 3other colleagues) with Hashimoto’s, Lupus, Sjorgen’s and a few more diseases. Repeatedly tested positive to 6 diseases and began super strong meds and high dose steroids to turn off autoimmune system. Dr’s called me such a challenge as I was not responding to treatment. Through the deep dedication of these drs investing time in research and contacting other colleagues on my behalf started aggressive treatment using I.V. therapy along with the high powered drugs, in their offices, since insurance would cover dr visit but no hospital services. Share my history to stress the importance of finding great (if possible) care and not stop looking out of frustration. After two years of various treatments, meds, and huge dietary changes, I was finally able to return to work part time. About 10 years ago, my insurance paid for my first hearing aids which was great, now, no longer covered. Cannot afford the Cochlear ones, $15,000 for just aids, (not including dr and hospital). Purchased $5,000 ones which are just ok.
My dedicated, out of state drs all stated that all I endured over those 5 years was completely avoidable with proper treatment, and would not have suffered the profound hearing loss that I do. Please be viligilant about symptoms and finding treatment.

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