Fourth Positive ANA

Hi everyone! I had another follow up appointment with my primary care physician today to go over blood work results from last time. My ANA is positive again. Quick history: positive in December 2020 at 1:640; positive again June 2021 at 1:1280, and 1:1280 in December of 2021. It came up negative August of this year (honestly not sure if that was accurate or not), and today showed as 1:640 again. We have been testing other antibodies throughout this process, but besides a single one barely showing positive for Sjogren's randomly one time, nothing else is coming up positive to give us any more information. In the mean time, I continue to deal with a lot of symptoms and now find myself trying to figure out how to get through my remaining two semesters of college with all of this going on. Our next step is to try a Cyrex Labs test. Does anyone have suggestions on next steps to take? Symptomatic, positive ANA, no other helpful hints in blood work. Also, which autoimmune diseases are most likely to show a homogenous pattern in ANA?

[Joyalinc]

Lupus often shows a homogeneous speckled pattern but it’s important for you to know that 20% of all SLE patients are seronegative which means that the antibodies hide sometimes & are not always detected; sometimes never detected. Because of this, your specialist should not be relying solely on the results of your blood tests. You need to meet 4 out of the 11 criteria in order to be diagnosed with lupus; this is the gold standard of diagnosis & even having a positive ANA even just one time counts as it is one of the 11 critera. You may be seronegative like me. My ANA is sometimes positive but my antiDnA was only + one time.

Again, clinically speaking, a person with 4 of these following 11 conditions can be classified as having lupus. These conditions may be present all at once, or they may appear in succession over a period of time.

Butterfly (malar) rash on cheeks

Rash on face, arms, neck, torso (discoid rash)

Skin rashes that result from exposure to sunlight or ultraviolet light (photosensitivity)

Mouth or nasal sores (ulcers), usually painless

Joint swelling, stiffness, pain involving two or more joints (arthritis)

Inflammation of the membranes surrounding the lungs (pleuritis) or heart (pericarditis)

Abnormalities in urine, such as increased protein or clumps of red blood cells or kidney cells, called cell casts

Nervous system problems, such as seizures or psychosis, without known cause

Problems with the blood, such as reduced numbers of red blood cells (anemia), platelets, or white blood cells

Laboratory tests showing increased autoimmune activity (antibodies against normal tissue)

Positive antinuclear antibody (ANA) test

A good rheumatologist would know about seronegative lupus but not many Family Practice doctors do. Be sure to ask your rheumatologist about it & point it out if you meet any of the criteria on this list. Have they not started you on Plaquenil yet? Any mention of steroids? Benlysta? Best of luck to you & feel free to reach out if you have any questions! I hope you get an official accurate diagnosis & are on your way down the path to feeling better very soon!

[Hidden in reply to Joyalinc]

Hi! Thank you so much for your reply. I have a few questions if you don’t mind. You talked about being seronegative for lupus antibodies. Can this occur with other autoimmune diseases as well? We know I have an autoimmune disease but it could be lupus, it could be another one, it could even be more than one. Second, you listed the 11 criteria and said I needed to match 4 of those. I have never had a rash on my face, I have experienced very small rashes on my arms. Oddly enough these rashes can come and go in as little as 30 minutes. They are tiny and I haven’t gotten one for a while. I do experience itching when in sunlight for too long, but almost never any sort of rash. I do experience joint pain and stiffness, but have not noticed inflammation in joints. That being said, my body doesn’t show physical signs of inflammation very well. I broke my wrist quite badly as a child and it never once became visibly inflamed. I believe I have had past abnormalities in urine, such as protein being present, but not recently. I also think urine tests may have shown red blood cells present at least once or twice before? I will need to go back and look. I don’t have seizures or psychosis but so deal with a lot of anxiety, depression, and neurological pain such as numbness, tingling, pins and needles. Looking at blood counts, my WBC in general has been elevated before, and my neutrophils are usually elevated, and if my memory is correct leukocytes have shown reduced one time. I haven’t shown any other antibodies yet (except SSB I believe, which was barley positive one time), and I consistently have a positive ANA with a list of symptoms. Based on this could lupus still be a possibility?

[KayHimm]

Hi Brooklyne -

You certainly are a dilemma in terms of diagnosis. With your persistently positive ANA and symptoms it is good your doctor is following you. You may just be in early stages and your symptoms and labs aren’t yet giving clues. Lots of us have had that experience. Interesting your Sjogren’s antibody was mildly positive. I wonder how a rheumatologist would interpret this. Do you have dry eyes? Sjogren’s is know your have neuro issues too. You might want to run by your doctor the possibility of starting hydroxychloroquine.

XxK

[Hidden in reply to KayHimm]

A diagnosis is sure doing a great job of hiding from me. Being in the early stages would actually make a lot of sense. The rheumatologist I went to found the positive marker for Sjogren’s to be interesting. She said if it came up positive again she would officially diagnose that. Unfortunately it never has again. My eyes are extremely dry and often quite painful and visibly irritated. I will ask about starting hydroxychloroquine. Thank you!

[KayHimm]

I think that is significant. Guess she wants to make sure it’s not a one off. Could you ask for a lip biopsy? I would definitely see an optometrist. Tell them about your positive ANA and either positive Sjogren’s antibodies. They can do a better test than the rheumatologist can. I learned that from a forum member! I just had it and didn’t feel anything.

Hang in there.

XxK

[Hidden in reply to KayHimm]

Asking my optometrist is a fantastic idea! He is always concerned with how dry my eyes are. Thank you ❤️

[KayHimm]

Oh dear, you must get that tested and documented. A rheumatologist will want that result. And you need treatment! XxK

[Hidden in reply to KayHimm]

I am going to call his office next week and see if I can come in to discuss this. He had me on eye drops that were helping significantly. He gave me samples to see if they would work, then filled a prescription for me. My insurance refuses to cover these eye drops and they are about $700 a month without insurance (yikes). A diagnosis might even help with something like this. In the meantime, my eyes hurt. Sjogren’s would definitely make a lot of sense with all my symptoms.

[KayHimm]

That is a lot of money! I would be surprised if the optometrist doesn’t help you with this. Yes, maybe with a tentative Sjogren’s diagnosis insurance will cover drops. Keep us posted.

[Hidden in reply to KayHimm]

I hope so! I will post progress and questions as they come up. =)