POSITIVE ANA but negative antibodies.: Hello there... - LUPUS UK

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POSITIVE ANA but negative antibodies.

Kateyes419 profile image
13 Replies

Hello there. I have had many symptoms and flares. Went to the GP and bloodwork showed positive ANA homeogenous pattern, but the tier (Antibodies) came back negative.

So he ruled out Lupus and said it was stress and anxiety and had the audacity to say it can be psychological. I about cried when he told me that....

Should I look else where or go see another Doctor? If ANA Is positive and antibodies negative, does that mean I don’t have lupus?

Symptoms are

Chest pain

Trouble breathing

Urticaria

Butterfly rash

Headaches

Brain fog

Joint pains

Extreme fatigue

Hair loss

Ulcers in my mouth

Etc

13 Replies
PMRpro profile image
PMRpro

Whatever it is - it is quite likely to be an autoimmune problem. Just because a GP doesn't think it is lupus doesn't mean you aren't sick - you need a referral to a rheumatologist. Is there another GP option in your practice? If not - is there another practice?

Kateyes419 profile image
Kateyes419 in reply to PMRpro

I would have to change to another group to get a new GP. But I am considering it too. I will ask or demand the referral.

in reply to Kateyes419

There are other autoimmune diseases which cause positive ANA other than Lupus and you can also have mix or undifferentiated connective disease (MCTD or UCTD). So please don’t pay too much heed to your GP. They usually only know a little about a lot!

Lupiknits profile image
Lupiknits

My GPs are only to happy to let rheumatology to do the work. They say quite clearly they don’t have the training themselves. As others have said there are many AI manifestations other than lupus. A new GP is called for.

KayHimm profile image
KayHimm in reply to Lupiknits

Yes, in the U.S. I think our internists just try to get to « possible systemic autoimmunes disease » and let the rheumatologist do the rest. In clear cut cases maybe they make a diagnosis like rheumatoid arthritis or a classic lupus presentation. But how often are autoimmune patients easy? :) I cannot imagine an internist diagnosing Dermatomyositis or undifferentiated connective tissue disease. That is why we have specialists. Text books cannot provide the answers. I like your GP. Important to know what you don’t know! K

KayHimm profile image
KayHimm

It is surprising that the doctor ruled out lupus with a positive ANA and all of your symptoms. Could you ask for a rheumatology consult? Do you have a photo of your rash? If a dermatologist thinks the rash is consistent with autoimmune disease, that would be very significant. In terms of your question about the blood work, they look at everything in context. The titer is important as well as the specific antibodies. At least in my case, low titer is significant. Other specific antibodies can become positive over time. It is very confusing and complex. There are no absolutes. Maybe others would agree that you should get a private consultation if you can. Hoping you can move forward. Hoping you move forward and get clarity. K

Kateyes419 profile image
Kateyes419 in reply to KayHimm

Thank you so much for your answer. Yes I definitely am going to ask for a referral

And if not I will go elsewhere. I don’t have a photo of my rash. I wish I did.

KayHimm profile image
KayHimm in reply to Kateyes419

How often do you get the rash and the ulcers? Having photos or getting in immediately to see the GP when you have them could be very useful. I don’t know what others think, but it may make more sense to wait until you have skin symptoms before going privately to see the rheumatologist. My concern is they will be without important evidence. Curious what others think. K

miccika1 profile image
miccika1

Which antibodies came negative? Your GP might have not ordered the full panel. For sure asap go to a rheumatologist. Demand a referral if you need one. There are a bunchnof medication they could prescribe to make you better.

1sam profile image
1sam

You have to see a Rheumatologist, they know better.

There are 11 criteria for diagnosing lupus, please read about it. Also, the list of blood tests used to diagnose and monitor Lupus is long .... I cannot assure you that you have it or not, but a specialist needs all the evidence to properly diagnose it or any other autoimmune disease.

Just as example: I do have Lupus SLE and it attacks my kidneys, my ANA is positive but Sm and DNA/RNP are not; C3 , C4 and L anticoagulant are normal, but anticardiolipines are not. ESR and PCR are high. And I'm not even mentioning white and red cells. All those numbers matter.

Please don't take no for an answer from the GP, you deserve a good life and feel better. You know there is something off in your body, don't stop until you get your diagnosis and treatment.

Hug!

Samantha

KayHimm profile image
KayHimm in reply to 1sam

Yes, so true — all the evidence! Your concise description of your history really shows how it is the total picture that has to be taken into account. We have similar labs, but my diagnosis is UCTD. I do not have kidney disease. Big difference. So many different presentations and the labs have to be interpreted with those features in mind. K

Chanpreet_Walia profile image
Chanpreet_WaliaPartner

Hi Kateyes419,

Welcome to the LUPUS UK HealthUnlocked community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

Yes, if you feel that your doctor is not taking your concerns seriously you are entitled to get a referral to see a different doctor. To find out how you can change doctors, visit lupusuk.org.uk/getting-the-...

An ANA test confirms whether or not a person has an autoimmune disorder. dsDNA antibodies are very specific for lupus (as they are not typically seen in any other condition or in healthy population) only approximately 60% of people with SLE will test ‘positive’. Therefore if someone is positive for these antibodies, it often means they have lupus, but if they are negative it does not necessarily mean they do not have lupus. For more information, you can read our blog article on ‘getting a diagnosis of lupus’ here: lupusuk.org.uk/getting-diag...

The symptoms you have listed are all symptoms commonly associated with lupus, below I have included some information links which you may find useful:

Pain management: lupusuk.org.uk/pain-managem...

Managing fatigue: lupusuk.org.uk/managing-fat...

Hair loss: lupusuk.org.uk/coping-with-...

Brain fog: lupusuk.org.uk/coping-with-...

Oral/nasal ulcers: lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

Kateyes419 profile image
Kateyes419 in reply to Chanpreet_Walia

Thank you so much for all this info

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