What can cause ANA titre of 1:2560?

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

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.

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.

@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?

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.

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.

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.