Positive Ana then negative

[Kwilliams123084]

Hi everyone. 4 weeks ago my pcp ordered blood work because he suspected I had a thyroid issue. He also did an Ana test. The Ana test came back positive and I was referred to a rheumatologist. After a physical examine he believed I may have lupus or RA. I have extreme joint pain, anemia, low vitamin D, extreme hair loss (bald spot), light rash on my cheeks and nose that is worse in sun, light sensitivity, constipation, headaches, and just an overall feeling of not good. Well I just checked my blood work online and this time my Ana was negative. I did have higher than normal histone levels (low positive) and aside for the normal markers of anemia and low vitamin D everything else was ok. Now I feel like I am back at square one and losing my mind. I am afraid I will go in there for my follow up and will be dismissed based on the new Ana test. Has this ever happened to anyone else? Am I just losing my mind?

[nanleighh]

Hi kWilliams, Did they do any auto antibody test along with the ANA?. It sounds like you have a lot of the symptoms of lupus, but most doctors won’t make any diagnosis without one of the auto antibodies. Histone antibodies are indicative of drug induced lupus so I’m not sure if you’re on any of the medications that would cause that. It sounds like you have been suffering a lot. I feel greatly for you, I have been through a lot of this myself. Keep a diary of all your symptoms, and pictures of any rashes that you have. Unfortunately sometimes it’s a long process for diagnosis of any autoimmune disease. I’m glad you found this forum, And you are welcome here even if it all your tests are negative. For myself it took 10 years to get a diagnosis. I hope that for you it’s not that long. We know inherently that something is wrong even though the tests are all negative or only slightly positive. Look up the drugs that cause drug induced lupus and make sure you’re not on any of them. I wish you the best in your journey. Warmest regards, Nan

[Hidden]

I don’t have Lupus, I have Sjögren’s - but I know I’ve had both RF and ANA positive then negative over the past few years. I’ve read many posts describing this here too so you’re definitely not going mad!

In diagnostic criteria terms only (sone rheumatologists are rigid, others more open minded about these) 5% of those with Lupus will be seronegative (anti-dsDNA), whereas 30% of those with Sjögren’s and RA will be seronegative (ENA negative).

I was initially diagnosed with RA with a weakly positive RF but later this was changed to Sjögren’s when my ANA went positive and I had a lip biopsy to confirm.

Hopefully your rheum will use other testing methods such as ultrasound of your joints to see the bigger picture and diagnose accordingly rather then relying only on bloods.

Other test results to look out for are ESR and CRP. But these can be normal too for some with rheumatic diseases. Please don’t worry too much - hopefully your rheum won’t be put off at all.

[eekt]

Hi Kwilliams, no fears, the ANA is a one-time test ie it only needs to be positive once to count towards SLE. It's a cascading test, and the lab will automatically test for the antibodies nanleighh mentions. dsDNA antibodies count as another point on the 4-from-11 criteria score rheumatologists use, as does low C3/C4 complement.

Here's the sole official SLE guideline:

academic.oup.com/rheumatolo...

Have a look at Table 5 - it lists all the criteria, joint pain, rash etc as wells as bloods.

The feeling of something not right - 'malaise' - is typical of lupus.

Hopefully you'll have another appointment with the Rheumy soon - it's very rare they'll diagnose at a first appointment, as they prefer to gather as much info as possible from bloods first (some tests like dsDNA take 3-4 weeks because a culture has to be grown in the lab): the treatments vary according to what's all going on.

I was sent for a CT abdo scan and a chest x-ray at my first appointment, just to check there was nothing going on inside - that's standard procedure for the initial assessment (Table 6 in the Guideline).

Try not to stress - it feeds any kind of autoimmunity. Be informed, and be well xxx

[Loopyloo43]

Hi I was dx 20 years ago and in all that time I have omlybevervhad one positive ana test with thevsymptoms and seeing a dr who’s speciality was lupus I got treatment I needed so not sure wether treatment affects the outcome of tests over years but wouldn’t worry to much on the tests but good luck and hope you have a good dr who is sympathetic to you finding answers regards sandra

[KayHimm]

You are not at all back to square one. Lupus and other autoimmune diseases are based on a constellation of symptoms. You were sent to a rheumatologist who is expert in diagnosing these diseases. In your case, the rheumatologist saw several signs and symptoms that caused him to tell you he suspects a systemic autoimmune disease like lupus. Some of your tests may have been negative. But the ANA can fluctuate. Your anemia is likely the anemia of chronic disease, which is relevant to the over-all picture. Try not to get caught up with the lab tests. These are extremely complicated and have to be viewed in a context. I have a feeling you will be put on medication with a presumptive diagnosis of autoimmune disease. You have good doctors and were picked up early. Wishing you better health and a better understanding of your diagnosis.