ANA used to be 1:1320 but is now negative. Thoughts?

[Newla]

Hi. I'm new here. Hope that explains the slightly long intro :).

In 2014, my ANA was ~1:1320. I was diagnosed with ITP and SLE; I was in the ER 3 times and was found on at least four occasions to have severely low platelets (2-6 range). I was initially treated with prednisone, and, since it proved to be insufficient at regular doses, I was later introduced to 3000mg solumedrol and 4 infusions of rituximab. Platelets returned to normal and have stayed high for 3 years (absent any further meds).

Last week, my new rheumy had my ANA measured again; it came back negative. But I am still severely photosensitive and also have a new symptom—temporary vision loss which comes and goes in one eye, accompanied by eye pain (same eye).

I will be meeting the rheumy again next month to discuss recent results.

Here are my two questions:

a) Does it mean I am "cured" if my ANA is negative even though I am still photosensitive, fatigued, etc.?

b) Could there be a connection between vision loss and SLE and if not, any idea as to cause? (I still hope the vision loss is due to something fixable and relatively minor, such as migraine...)

Thanks!

[Buffy14]

Hi , I recently posted about this , if you flick through the posts you should find it , it was only last week . If you search remission it will come up aswell as other posts about remission , some of the replies to the posts my help you .

[Hidden]

I don’t have SLE - but have a high ANA same as yours with Sjögren’s. Prior to last year, in different labs around Scotland and while on various disease modifiers and steroids, it had been negative and inconclusive. My IgG was previously normal but last year and this was raised with the high ANA.

When I was originally misdiagnosed with RA I had positive RF twice but this is now negative. I was rediagnosed by lip biopsy. I have personally concluded that drugs can and do skew our results significantly whatever the doctors say. I know it to be true because it happened so often with me when I was on these modifying medications.

Re remission - well 2 years of methotrexate pushed my RA symptoms back pretty decisively but my ESR/PV and CRP continue to fluctuate, always elevated despite meds. I’m told this is unique to Sjögren’s now but it doesn’t apply to my CRP which came down to near normal on steroids. The only time I’ve felt I was in symptom remission was when I was on Prednisolone. Otherwise, despite trying Methotrexate, Sulfasalazine, Hydroxy, Azathioprine and now the maximum dose of Mycophenolate - which I’ve been on for a year now - I’ve never felt that anything apart from synovial joint pain has remitted. The neuro symptoms seem to be progressing slowly but surely.

My Sjögren’s Disease activity score was tested six weeks ago and is still highly active. I think drug induced remission would be to feel better so if you are still symptomatic, despite normal ANA, you probably do still have active Lupus or other seronegative autoimmunity.

[soootired]

I'm going to be watching this post with interest because this happened to me, but my rheumy has gone from telling me I have sle - when it was positive, to telling me now I don't. I now have dx of UCTD.

In my case it was starting hydroxy and occassional short courses of pred that seemed to change matters.

[Bebe76]

Your ANA level can fluctuate, and typically is not used to monitor lupus flare or remission once you've been diagnosed. Currently there is no cure for lupus, but it can go into remission, with or without the help of medications. To determine the level of lupus activity, your doctor will do a series of blood and urine tests, and also evaluate your physical symptoms. Blood tests such as anti-dsDNA and serum complement (C3, C4) are more typically used to monitor lupus activity, although they do not always correlate in every patient.

Your vision loss should be evaluated as soon as possible by an optometrist or ophthamologist. Lupus can affect the eye, but many other things can as well.

[Melba1]

Yes, I have read lots of research on this and agree that ANA should be (I use the word should as many less informed Drs still don't fully understand it can become -ve) used as a diagnostic tool rather than as a measure of disease activity. Mine also became negative recently after several months of high steroids and a recent research paper found approx. 25% of patients with severe lupus (neuro and kidney) had a -ve ANA after treatment with steroids and immunosuppressants despite 95% of them having had a +ve ANA initially. Some people's will stay -ve but unfortunately does not mean they are cured or even feel any better I expect.

Like Bebe says, complement levels are a much more reliable indicator of disease activity but again not for everyone. I think we are all so different with some where dsDNA fluctuates, some get a raised ESR, some get depleted complement. I now ask for CH100 (total complement) and C3/C4. Most hospitals will do C3/C4 but not all understand it. I had a recent hospitalisation with neuro lupus and my ANA was -ve but my C4 low and my CH100 severely depleted (not that the neurologists understood what it meant at the time!).

My old rheumy told me that once you had 2 ANA +ves you were forever classified as ANA +ve on the criteria regardless of future results becoming negative as often drugs and just length of time with the disease can cause temporary or even permanent negativity but the whole rheumy department I'm with have a policy of treating the symptoms and the person rather than just using blood results.

It can be quite worrying we all have a disease where even the specialists in that disease all have different opinions about quite basic things?!!

Not sure about eyes I'm afraid but if it comes and goes that's positive I think as means it can be rectified but see someone ASAP.

x

[Chanpreet_Walia LUPUS UK]

Hi Newla,

Welcome to the LUPUS UK HealthUnlocked Community!

We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK contacts who you can chat with over the telephone. You can download or request the pack here: lupusuk.org.uk/request-info...

ANA levels can fluctuate due to several different reasons such as disease activity and medication. it is important to bear in mind that an ANA test gives an indication on whether a person may or may not have an autoimmune condition. It does not provide sufficient evidence to confirm a diagnosis of lupus. 95% of lupus patients will have a ‘positive’ ANA however, 5% will not. To find out what tests and ‘diagnostic’ features are needed to confirm lupus, you can read our blog article here: lupusuk.org.uk/getting-diag...

It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here: lupusuk.org.uk/managing-fat...

Around a third of lupus patients have some sort of eye related matter. We published a factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ which I hope will be of help to you: lupusuk.org.uk/wp-content/u...