ANA 1280 now ANA 2560

I have been told that the actual value for the ANA doesn't correlate with disease severity or flares. (I had 1:5280 and was indeed sicker, but whatever...). Blood work isn't diagnostic, I have been told (I also have very high anti-centromere antibodies for scleroderma but not diagnostic).

I would focus on treating symptoms rather than diagnosis. Do you have arthritis? Does the sun flare you? Have you ever taken steroids and had relief? Have you done any PT?

Clearly something might be going on with your immune system. I hope you can find help. Functional medicine might be of benefit. I saw an integrative medicine doc and am trying curcumin and a few other things for inflammation.

@suchapaine1 Welcome to Mayo Clinic Connect. We’re glad that you found us. Most of us on MCC aren’t professionals so we’re unable to read or decipher your lab work. but members will be along soon and they can give you information from their experiences. And 3 years is not long to get a diagnosis!
I agree with @windyshores , now, while you await a good diagnosis, you should do daily exercises. Take a nice long walk every day, if you can. You WILL get a diagnosis, just be in top shape!
Is there anything else we can help you with?

All RA tests are negative.
Rash happened in 2020. Sun does trigger pain and fatigue. I was Dx with Raynaud’s July 2023 as well. Sorry forgot. Not been offered steroids as a relief nor PT as an option.

Raynaud's is a signficant symptom though it can happen by itself.

I meant do you have osteoarthritis?

It sounds as though the doctors have been reluctant to label you as
systemic lupus but covered you with Plaquenil as a possibility.
Make sure to monitor your kidney function and consider an ophthalmology
check up. Do you have any contraindications to a trial of prednisone for
symptomatic relief.?You might benefit from workup at a multi specialty
clinic or university med center. Good that you are aware of your labs.
A high ANA can also be found with minimal symptoms or other findings
unlike your situation.

Hi. I completely understand your frustration. I suffer from SLE and RA, etc. And have learned it can take years and many many tests and probably multiple doctors before you’ll get a final diagnosis. It seems auto immune diseases are difficult to pin down and from my experience, some rheumatologist aren’t too excited to give an auto immune diagnosis. Hang in there and the answers will come.

It’s common for the ANA titer to fluctuate some. You have presented a very good, concise timeline and description of symptoms along with pertinent labs. It’s difficult to have such pain and fatigue without a diagnosis or effective treatment! I don’t know why so many rheumatologists are reluctant to make a diagnosis but they are and you certainly have a constellation of significant symptoms and labs showing autoantibodies and inflammation. A positive RNP is usually associated with mixed connective tissue disease. There are other drugs such as methotrexate or leflunomide or Immuran that could be prescribed since the Placquenl didn’t seem to help. A trial of Prednisone would probably give you the quickest relief but long term use has some nasty side effects. I would recommend seeing another rheumatologist associated with your local university clinic. I would also ask for a blood test called Avise CTD, which is more comprehensive and sensitive and can be a huge step toward diagnosis. Also, print up a list of the signs and symptoms of lupus and check all that you’ve experienced in the past 3 years. If you get a rash, take pictures of it and see a dermatologist for a skin biopsy. Take your timeline, list of symptoms, copies of lab results and pictures to your new doctor and be as assertive as you can about getting answers and help. You should not be suffering like this! I wish you well and hope you will keep us posted on your progress.

I started having dizzy and passing out spells almost 2 year now. I've been seen so many doctors. A neurologist, a cardiologist and rheumatologist. My Neurologist finally decided to do some blood work. My ANA was positive along with my CRP being a 12.9 When normal range should be 0 to 4.9. She sent me to Rheumatology and he said your 32 and shouldn't worry about any of this stuff right now. You're to young and there's to many autoimmune disorders out there that it would be a waste of time to try and narrow it down. It definitely stresses me out as I am a single mom and with my passing out and feeling absolute miserable on some days its hard and I get so worried something will happen when my son and I are home alone and he won't know what to do even through I've had to teach him to call 911 if something happens. I finally got my referral to Mayo but insurance is making it so hard to get seen there so I'm in the middle of fighting insurance and doing whatever steps they want me to take to get them to approve my visit at Mayo. I am ready for someone to actually listen to me and take my health serious and not just push it off because of my age.

@eberry24 you don't need a label as yet: that is often delayed in young people since rheumatolgists often feel things become clearer in time and you don't want to avoid wild goose changes.

However, fainting needs to be addressed. CRP can relate to inflammation and also heart. What did the cardiologist say? This could be syncope. Is your blood sugar okay- that is another cause of passing out. I hope you can get someone to listen. Sounds like cardiology should do a patch monitor and maybe stress test, echo, etc.

Did the neurologist suggest migraines or what did they say?

I see a neurologist and she put me on Ajovy to help with migraines. I don’t typically get pains just the Ora’s. It has helped with some just not the dizziness, lightheaded and passing out. My cardiologist has done a stress test and said it was normal. I’ve wore a few different monitor’s. The next step my cardiologist was considering was a tilt table test. My mom has all of the same symptoms as me and she’s 52 and hasn’t been diagnosed either but she’s had 2 strokes now so we’re really pushing together for help. I’m just to the point of I shouldn’t have to live miserably just because I’m young. No one has ever really looked at my sugars I don’t think. My glucose is typically good when I’ve had panels