Has anyone had or known of anyone to have a positive ANA test w/ a titre of 2560 and not been diagnosed with lupus or an autoimmune disease? Does the high titre # mean you are more likely to have a diaease?
There's a couple of articles for you to read, I know it's really hard and you are very anxious (understandably) but I hope that you can get a Rheumy appt very soon to get this sorted out :hug:
It would be unusual to have an ANA titre that high and not have some kind of autoimmune disease, it may not be Lupus but could be something else. Further tests and a clinical history will help sort that out.
One of the articles mentions that sometimes family members of those with autoimmune diseases can have a high positive ANA, which we know to be the case. However I must admit any we have witnessed here have not had as high a titre as you. On the other hand if someone wasnt having symptoms then they wouldnt usually be looking into the site, so maybe there are some out there with very high ANA's and no disease. I think what is crucial here is that you do have some symptoms, so they need to work out what those are from.
Did you take a look at the criteria used to help diagnose Lupus at the top of our Not Diagnosed forum? Do you meet any of them besides the high positive ANA?
from memory, we have someone on this board at the moment who is being watched for autoimmune disease but has no specific dx - and her ANA is at the same level.
You have a good strong ANA there which is definitely a strong pointer towards an autoimmune disease, but until you see a rheumie you can really only talk in terms of likelihood rather than guarentees. Your ANA is very suggestive of connective tissue disease, especially if you have supporting symptoms, but you will need to see a rheumie to find out more than that.
My ANA ranges between 1:1280 and 1:2560 - the numbers double with each step, so these two results are only one level apart. ANA's don't reflect disease severity, they are useful for dx but that's about it.
I hope you have an appointment with a rheumie, as they will help you get to the bottom of what is going on.
It is possible to have high antibody levels and not have any symptoms of disease. In that case there is no diagnosis possible and no need for treatment. Such people need to keep an eye out for symptoms developing because it seems to be the case that they are at greater risk.
There are very few circumstances when people are tested for antibodies without having symptoms. However studies were done on an ideal group who could be followed up over the years, entrants to the US army. I can't remember the exact statistics but a significant number of those who did have lupus related antibodies went on to develop symptoms of lupus. I will check out it.
Another asymptomatic group is well women whose children were born with neonatal lupus due to their mothers' anti Ro antibodies crossing the placenta. I don't know if they can say yet how many of these women went on to develop disease symptoms. It is much harder to gather the data and keep track of the women over the years.
I hate to think of you anguishing away about all this. I am sorry about your mom and this will surely be preying on your mind. Perhaps it will help to think that each case is different even when the people are closely related.
Very possibly your mother wasn't diagnosed early on, and wasn't as well treated as she might have been. Maybe the knowledge wasn't there as it is these days and some drugs not available then or she couldn't access them for some reason. One very hot topic in lupus these days is heart disease so awareness is very high.
You almost certainly have access to information especially through the forum and online sites like the LFA, that she didn't have. So if you do have lupus your chances of being successfully treated are doubtless far greater than hers.
So take heart and live in hope. Get on with doing what you need to to get diagnosed or reassured and enjoy life as much as you can. Fretting is understandable but doesn't get a person very far and that energy can be put to much better use
I don't have much to add, everyone's already given you great advice, but I just wanted to say my brother is one of those cases of a high ANA but no symptoms - the conclusion was pretty much just "come back if you develop symptoms." As Clare points out, people without symptoms don't generally get tested, so there are probably lot more people out there with positive ANA that no one knows about. In my brother's case, he had a head injury and they did an extensive bloods panel on him and the high ANA turned up (at the time it was just slightly positive, but they retested him a while later and it was the same as yours, 1:2560). His rheumy said about 10% of the population "may transiently have positive ANAs or lupus anticoagulants." His ANA later went down some, but was (and presumably still is, though he hasnt been retested in a while) positive. Here's the thread I started about him at the time, if you're interested - http://www.thelupussite.com/forum/showthread.php?t=63079 - but if you do have some symptoms then it's another story. Definitely see a rheumatologist in any case, they're the best informed to be able to interpret these results and integrate them with any symptoms you have. Good luck, and as Clare said, try not to worry too much in the meantime!
edit - I just read some of your other posts (should have done that before I posted), and just want to add that in combination with symptoms it is (as others have said) much more likely that something is going on. Glad you're making the rheumy appointment, hope you can get in soon and get more information!
I have the same ana result and have been in incredible constant pain in all my joints, but saying this I have only been able to see a rheumy once, who said because I did not have sun sensitivity I did not have Lupus. She took blood tests and said she'd ring me, that was 3 months ago and I've not heard anything yet. I did see a breast recontruction surgeon last week though because of very swollen lymph nodes in breasts and underarms, he said I did need treatment and is refering me to someone else who will take me seriously and treat me so. Not every doctor takes a high ana seriously even with symtoms.