1. < Autoimmune Diseases

What can cause ANA titre of 1:2560?

Posted by carpe_bean @carpe_bean, Sep 18, 2017

Hi everyone,
I got really sick back in January and have been struggling to get a diagnosis or treatment. I've read quite a few chat threads on this site for some time but have never posted. I have a question no doctor has been able to answer. Maybe someone in this community might have some insight! In May a doctor tested my anti-nuclear antibodies (ANAs). The titre was 1:2560. I know ANAs can be elevated by autoimmune diseases, cancer, and viral/bacterial infections, among other things. So far, doctors haven't been able to figure out what's wrong, despite a host of weird symptoms and irregular tests. My question is: How likely is such a high ANA to be associated with an autoimmune disease? I've repeatedly read that the titres caused by viruses and bacterial infections are usually "mild", presumably <640. Is that true? Doctors have ruled out cancer, they don't believe it's a bacterial infection, but a virus is always a possibility. Can chronic viruses like Epstein-Barr cause such a high ANA? Has anyone else here personally experienced that? I've seen a handful of doctors, but most have been dismissive and unhelpful. I'm really frustrated. Hopefully someone here can provide some clarification. Thanks!

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Kathryn M. Carroll | @kathrynmc | Oct 28, 2021
In reply to @cathiz "Hi @carpe_bean I have a high ANA titre also and after further testing my Rheumatologist discovered..." + (show)
@cathiz

Hi @carpe_bean
I have a high ANA titre also and after further testing my Rheumatologist discovered I have systemic scleroderma. She immediately started me on CellCept and I am doing great now. It took 6 weeks for the medicine to get enough in my system to really start working but when it did it was like night and day difference from one day to the next. They caught mine in the beginning and it sounds like that is the key, even though it sounds like others that have started on CellCept also have had good benefits also. Hope this helps! @cathiz

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I was diagnosed with Dermatomyositis with MDA5 antigens and with interstitial Lung Disease in January of 2021, my rheumatologist wanted me to get on Cellcept. Medicare and my insurance company BCBS wouldn’t pay for it, my doctor appealed it three times. The reason they gave for denying the appeal was, because it had not been approved by the FDA to treat Dermatomyositis. So I am wondering how you were able to get Cellcept. I would like to find a way to get Cellcept.
Thank You, Kathryn

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janice76 | @janice76 | Mar 23, 2022

My ANA titre of 1:2560 was, after 12 years, diagnosed as Scleroderma. I certainly hope you find out soon. When I read your symptoms, I immediately remembered all the difficulties I had with swallowing. Good luck🤞

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foyk | @foyk | Mar 24, 2022

my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis overlap which was dx 10 yrs ago then told conflicting dx since. i’ve had sjogrens since 40s and managed well with internist who knew i had seen 3 rheumotologist and frustrated. with tia attempted again, along with neuro. asked for test/scleroderma and 13 vials later have labs but another worthless rheumotologist that spent 5 mins on video before acting like she couldn’t hear me. she didn’t hear me intake/original appt with x-rays /labs and nothing followed through. nothing. shared dx of IRD and not wanting to further harm eyes with going blind. asked for short term option to knock down inflammation , functional approach with using adaptogens , herbs, decade now to manage pain, flare ups etc with exercise and liquid diet when needed nutrients. when asked on scleroderma dx clarification was told ‘ it’s not lupus’. i didn’t test and could return for additional. wouldn’t even refill basic d3, ibuprofen rx to reduce costs with $7 rx on both at higher dose than over counter. so frustrating to not be heard when you know your body and screaming for help - to be seen. to be respected that your intuition is valid and your not ‘crazy’. the look and eyes say it immediately when you know they are not the ‘specialist’. i have raynauds daily upon triggers, toes blue/blk daily has moved to knees from ankles in pain, swelling and vascular concerns left leg/knee and can’t breathe. last week was first patch of white shiny taught patch on bridge of nose. had immaculate care of teeth, last cleaning oct at time of infection / decay on two front receding JUST since flare. my body is attacking every part of my light. i’m tired. exhausted. medical discrimination at work fear losing coverage that in jan hit annual max and have coverage. (mri/mra /cta for 3-5 aneurysm scans by neuro ).
sorry for rant. some days i just can’t believe this is reality.
have vascular appt monday. internist april. has anyone had success with immunology vs rheumotologist? i’m trying to get answers to manage w internist/specialist goal and eliminate one size fit mentality of rheumotologist.
wishful thinking?
systemic s flare ? is more than i’ve managed with sjogrens flares.

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3 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 24, 2022
In reply to @foyk "my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis..." + (show)
@foyk

my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis overlap which was dx 10 yrs ago then told conflicting dx since. i’ve had sjogrens since 40s and managed well with internist who knew i had seen 3 rheumotologist and frustrated. with tia attempted again, along with neuro. asked for test/scleroderma and 13 vials later have labs but another worthless rheumotologist that spent 5 mins on video before acting like she couldn’t hear me. she didn’t hear me intake/original appt with x-rays /labs and nothing followed through. nothing. shared dx of IRD and not wanting to further harm eyes with going blind. asked for short term option to knock down inflammation , functional approach with using adaptogens , herbs, decade now to manage pain, flare ups etc with exercise and liquid diet when needed nutrients. when asked on scleroderma dx clarification was told ‘ it’s not lupus’. i didn’t test and could return for additional. wouldn’t even refill basic d3, ibuprofen rx to reduce costs with $7 rx on both at higher dose than over counter. so frustrating to not be heard when you know your body and screaming for help - to be seen. to be respected that your intuition is valid and your not ‘crazy’. the look and eyes say it immediately when you know they are not the ‘specialist’. i have raynauds daily upon triggers, toes blue/blk daily has moved to knees from ankles in pain, swelling and vascular concerns left leg/knee and can’t breathe. last week was first patch of white shiny taught patch on bridge of nose. had immaculate care of teeth, last cleaning oct at time of infection / decay on two front receding JUST since flare. my body is attacking every part of my light. i’m tired. exhausted. medical discrimination at work fear losing coverage that in jan hit annual max and have coverage. (mri/mra /cta for 3-5 aneurysm scans by neuro ).
sorry for rant. some days i just can’t believe this is reality.
have vascular appt monday. internist april. has anyone had success with immunology vs rheumotologist? i’m trying to get answers to manage w internist/specialist goal and eliminate one size fit mentality of rheumotologist.
wishful thinking?
systemic s flare ? is more than i’ve managed with sjogrens flares.

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@foyk Please don’t apologies for the rant! We all do it, especially when our frustration gets out of control. I’d be frustrated, too. I am glad you’re going to see some new doctors soon. I included a link to a discussion on meeting a new specialist.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Are these new doctors connected with a large, regional medical system?

REPLY
1 reply
kt8 | @kt8 | Mar 25, 2022
In reply to @foyk "my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis..." + (show)
@foyk

my ana titer 1:1280 from recent tia, sinus infection, with no clarification on whether systemic sclerosis/polymyositis overlap which was dx 10 yrs ago then told conflicting dx since. i’ve had sjogrens since 40s and managed well with internist who knew i had seen 3 rheumotologist and frustrated. with tia attempted again, along with neuro. asked for test/scleroderma and 13 vials later have labs but another worthless rheumotologist that spent 5 mins on video before acting like she couldn’t hear me. she didn’t hear me intake/original appt with x-rays /labs and nothing followed through. nothing. shared dx of IRD and not wanting to further harm eyes with going blind. asked for short term option to knock down inflammation , functional approach with using adaptogens , herbs, decade now to manage pain, flare ups etc with exercise and liquid diet when needed nutrients. when asked on scleroderma dx clarification was told ‘ it’s not lupus’. i didn’t test and could return for additional. wouldn’t even refill basic d3, ibuprofen rx to reduce costs with $7 rx on both at higher dose than over counter. so frustrating to not be heard when you know your body and screaming for help - to be seen. to be respected that your intuition is valid and your not ‘crazy’. the look and eyes say it immediately when you know they are not the ‘specialist’. i have raynauds daily upon triggers, toes blue/blk daily has moved to knees from ankles in pain, swelling and vascular concerns left leg/knee and can’t breathe. last week was first patch of white shiny taught patch on bridge of nose. had immaculate care of teeth, last cleaning oct at time of infection / decay on two front receding JUST since flare. my body is attacking every part of my light. i’m tired. exhausted. medical discrimination at work fear losing coverage that in jan hit annual max and have coverage. (mri/mra /cta for 3-5 aneurysm scans by neuro ).
sorry for rant. some days i just can’t believe this is reality.
have vascular appt monday. internist april. has anyone had success with immunology vs rheumotologist? i’m trying to get answers to manage w internist/specialist goal and eliminate one size fit mentality of rheumotologist.
wishful thinking?
systemic s flare ? is more than i’ve managed with sjogrens flares.

Jump to this post

So sorry that you are suffering.
Have you considered Mast Cell Activation Syndrome. A high ANA could correlate. It is not widely understood and difficult to diagnose and treat. Some people find more success with an informed allergist rather than a rheumatologist. Lawerence Adrian MD is a respected authority on the subject and has a book that could be helpful. There are internet sites that can be helpful.

REPLY
2 replies
foyk | @foyk | Mar 25, 2022
In reply to @becsbuddy "@foyk Please don’t apologies for the rant! We all do it, especially when our frustration gets..." + (show)
@becsbuddy

@foyk Please don’t apologies for the rant! We all do it, especially when our frustration gets out of control. I’d be frustrated, too. I am glad you’re going to see some new doctors soon. I included a link to a discussion on meeting a new specialist.
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Are these new doctors connected with a large, regional medical system?

Jump to this post

appreciate your kindness. yes, all new are within same hospital ( piedmont hospital )as Internist that i trust so he can access all records through mychart vs all the disconnects with portals at various hospitals. i’m getting there, just 6months of what feels like a nightmare.

REPLY
foyk | @foyk | Mar 25, 2022
In reply to @kt8 "So sorry that you are suffering. Have you considered Mast Cell Activation Syndrome. A high ANA..." + (show)
@kt8

So sorry that you are suffering.
Have you considered Mast Cell Activation Syndrome. A high ANA could correlate. It is not widely understood and difficult to diagnose and treat. Some people find more success with an informed allergist rather than a rheumatologist. Lawerence Adrian MD is a respected authority on the subject and has a book that could be helpful. There are internet sites that can be helpful.

Jump to this post

thank you! will ask when seeing immunologist /allergist dual specialty sought and scheduled.

REPLY
kt8 | @kt8 | Mar 26, 2022
In reply to @kt8 "So sorry that you are suffering. Have you considered Mast Cell Activation Syndrome. A high ANA..." + (show)
@kt8

So sorry that you are suffering.
Have you considered Mast Cell Activation Syndrome. A high ANA could correlate. It is not widely understood and difficult to diagnose and treat. Some people find more success with an informed allergist rather than a rheumatologist. Lawerence Adrian MD is a respected authority on the subject and has a book that could be helpful. There are internet sites that can be helpful.

Jump to this post

Lawerence Afrin

REPLY
Mshutch | @mshutch | Oct 5, 2022

my rheumatologist also checked my ANA (Antinuclear Ab, HEp-2 Substrate, S).
Method: Immunofluorescence using HEp-2 cellular substrate

My result was also 1:2560 and a comment: ANA is strongly positive in a centromere pattern consistent with impression of scleroderma.
Before sending me to the rheumatologist, my primary did an ANA2 CASCADE.
The interpretation was only a comment: Results are consistent with CREST syndrome.
C.R.E.S.T. is old terminology for systemic sclerosis but it stands for:
(calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly and telangiectasias).
I have had all of these for several years except for the calcinosis.
Here is a link to the information from Mayo on it:
https://www.mayoclinic.org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952

REPLY
carpe_bean | @carpe_bean | Oct 25, 2022
In reply to @socalgirlntx "Hello. I came across this discussion group and read this post and immediately connected to your..." + (show)
@socalgirlntx

Hello. I came across this discussion group and read this post and immediately connected to your story. I wish I could offer a word of wisdom, but unfortunately find myself in the same boat. My ANA titer was very similar. Mine was 1:2580, which is really close to your numbers. I have yet to get an appointment with a rheumatologist so I am in the dark, other than getting a copy of the ANA report and then trying to look to the internet to find some answers. I don't have a diagnosis. My GP suspects Sjogrens Syndrome, with the possibility of additional autoimmune disorders. I am on a six month waiting list to get in with a rheumatologist, so I'm looking at 6 mos to a year to even get in with a specialist. I'm not very good at sitting and waiting, so I look for my own answers until I find answers from a professional. However, hearing your story makes me very nervous that I may never find answers even IF I'm able to get into a specialist.

I am curious about which specific antibodies you tested high on. My report shows very high SSA-52, SSA-60 and SSB antibodies.

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Hi @socalgirlntx

I just now finally saw your comment - and others - on my original post from years ago. I know it's way past due, but I still wanted to respond and see how you're doing.

How ARE you doing? Did you ever get that appt with a rheumatologist? Did they do testing? Did they give you a diagnosis or any answers?

I never did get any definitive answers from doctors in Germany. After about two years, I stopped going entirely. One doctor recommended a gluten-free diet for five months, which was absolutely miserable and had zero effects. Another - ironically - recommended I stop going to doctors and stop trying to figure out what was wrong. I say ironically because he might've actually been right (for my personal situation - definitely NOT suggesting anyone else give up looking for answers to their own health problems!) My health continued to improve on its own, with a lot of patience, gradual return to the physical outdoors sports I love, and really just time. Considering how stressful doctor appts were, it was easier just dealing with the symptoms without dealing with them on top of it.

Funny you should mention it but Sjogrens was definitely something I considered early on! Not a single doctor I saw mentioned it, but it seemed to fit with what other people had written about online. Interestingly, my ANAs stayed really high for about a year, then gradually started to come down as my symptoms improved.

Autoimmune attack of some sort? Maybe. No idea. Just a really nasty virus? Who knows. I tend to lean toward the former since I had a similar bizarre, severe illness come on abruptly in 2006 as well. That first time, all symptoms resolved within about a year. This second time, the symptoms were a lot worse for well over two years and six years later they still haven't resolved completely.

I'm still expecting whatever this was to just hit again some day. In the meantime, I try to enjoy how good I feel NOW.

I really do hope that you've gotten some answers or at least that you're just feeling better!

~Carrie

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