Can ANA change and what does it mean if it does?

[Ck09]

Bit confused now. Had blood tests done recently and ANA now negative but was positive this time last year. What could this mean? Thanks

[dianekaty]

A positive ANA isn't always indicative of lupus or other autoimmune conditions, it can be mildly elevated in healthy individuals. But, you can have lupus and still have a negative ANA. In fact, medications and low activity of antibodies circulating can result in a negative ANA in up to 20% of people with treated lupus.

[Ck09 in reply to dianekaty]

Thank you. It was partly on the basis of the positive ANA, along with symptoms, that a skin biopsy was done which came back positive for lupus. There was a hint from the rheumatologist that he'd be considering different medications depending how well I'd respond to the Plaquenil. With the negative ANA I wasn't sure what would be the outcome. I really appreciate your help.

[dianekaty in reply to Ck09]

You are most welcome. There are different types of lupus, and systemic produces, in most cases, the higher level of ANA's. Sed and ANA are just pieces of the puzzles, both non specific tests, that are used to help establish a diagnosis. The skin biopsy would be a more specific test. It is possible that you have a discoid lupus or subacute cutaneous lupus which can produce less ANA blood markers. It is also possible that you are just developing lupus and the markers are still developing. Finding a good rheumatologist that specializes in autoimmune disease is crucial so they can monitor for changes. Best of luck and hope you find answers from your doctors, not more questions. Also, make sure they provide you with ways to manage your condition, including sun protection, adequate sleep, etc... These are very important!

[Ck09 in reply to dianekaty]

Thank you. I'm avoiding the sun as much as I can. Sleep is not great with my joint pain so I'm hoping that's something he can address. I'll certainly be writing down all my questions in advance to bring with me. Lots of great points made here.

[cctexan in reply to Ck09]

I had a positive Ana which is what led me to more testing etc. I recently was diagnosed as SLE lupus. Whereas I was MCTD for years. And the rheumy could never get a pos ANA like the other lab. Turns out it’s sneaky 0

Plus different lab testing shows up. You’d think they’d give us a fair shot at understanding all this

Oh by the way, I finally stopped wearing makeup if any sort to my dr appt. especially rheumy. She kept saying oh my you don’t look ( rested, healthy, etc). It made a difference in her getting to take my quality of life more serious.

[HollyHeski]

You have a good answer from dianekaty - you have to look at the whole picture, bloods / symptoms / etc.

[Ck09 in reply to HollyHeski]

Again, thanks for taking the time to reply. Simple Googling was only confusing me more!

[lupus-support1 Administrator]

It is very confusing for patients and doctors!

There are many people walking around with a positive ANA and are perfectly healthy!

There are others, I am one, who have never had a positive ANA, but my immunoglobulins are abnormal!

It’s most important to have a specialist in lupus as not all rheumatologists have treated lupus patients.

Do you have SLE or lupus of the skin?

With good wishes,

Ros

[Ck09 in reply to lupus-support1]

Thanks Ros. A dermatologist originally diagnosed skin Lupus but also referred me to a rheumatologist as I had other symptoms, more suggestive of SLE. Having met him he was inclined to think systemic Lupus but it was all very vague. He gave me leaflets on different medications such as methotrexate (spl) and a biologic also and said he would monitor how I was doing on the Plaquenil, checking my bloods etc. I'm seeing him again in 2 weeks. He sent me for physio but physio saw little improvement over 7 weeks and suggested there was more going on. I've been on Vimovo for the last few months and noticed some improvement in joints pain but not enough to say I'm pain free or anything. GP thinks he will change me from Plaquenil. I don't know if he specialises in Lupus. I'm not sure if there are any near me. Thanks again. Ruth

[lupus-support1 Administrator in reply to Ck09]

I am going to send some information later you may find helpful!

Plaquenil is THE standard treatment for SLE. It is helpful for rashes and fatigue. The only advice I would make is for you to see an ophthalmologist (not optician) every year for a thorough examination. If you haven’t seen one, ask for a referral from your GP! I have been taking it for 20 years! Like everything, you need to make sure there aren’t side effects! It’s a precaution that is all! Plaquenil is a wonderful drug, but you may need something else!

Really, your GP shouldn’t be determining your treatment!

If you reply to my private message, can you say where you live?

With good wishes,

Ros

[Ck09 in reply to lupus-support1]

Thanks Ros. That is good to hear. My aches and pains may not be Lupus related at all. I have definitely noticed an improvement in my energy levels but I also reduced my hours at work 🤔. I'm not sure how to reply to your pm or even if I can see it. Still getting used to the forum! I'm in the south of Ireland. Cork is the nearest city to me. I'd appreciate any information you can provide. Thanks again.

[lupus-support1 Administrator in reply to Ck09]

When I’m on my laptop, I will send you a message which you will see when online!

I will do some investigating but I don’t know any lupus specialists off hand near Cork!

I will try my best to support you because it can feel lonely!

Speak later!

[Ck09 in reply to lupus-support1]

That is very kind of you. Thanks.

[Bellaflowe Volunteer]

Absolutely it can! My ANA was positive when I was diagnosed 17 years ago with SLE and Lupus Nephritis. However, a few years after that, my ANA became negative and it has stayed that way ever since. It doesn’t mean my lupus has gone, or that yours has, it’s just the way lupus is. Your antibodies won’t be as active now, although that doesn’t mean your lupus is any less troublesome!

There is still so much we don’t know about lupus and it is well known for being tricky to diagnose. It’s known as ‘The Great Pretender’ because it mimics different diseases. Thankfully, more doctors are beginning to realise that a negative ANA doesn’t mean that that person doesn’t have lupus. There are many others factors to take into account, like rashes, fatigue and joint pain etc.

The best thing is to see a rheumatologist who specialises in lupus. You can ask your doctor for a referral if you’re not happy with your current doctor.

Really hope you get answers soon and you’re okay!

Suzy x

[Ck09]

Thanks Suzy. That's good to know. Rheumatologist is happy to keep me on Plaquenil for the moment which I'm happy about ☺️