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Discussion Starter #1
rhuemy called to let me know that my ana of 1:640 had doubled within a months time and that he could do a lip biopsy for sjorgens but it probably wouldn't be conclusive. so for now he will just monitor me. I 've got news for him I won't be back. Has any one heard of an ana this high. I have not seen one listed like this. He still says it is not lupus I don't meet the criteria. Red on cheeks (looks like malar to me), positive ana, mouth ulcers, arthritis (he says RA),nosebleeds,swollen ankles,hair falling out,red v on neck,extreme fatigue, recurring illness, dry mouth, just to name a few that I can remember(brain fog). Teri
 

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Hi Teri,

Am I understanding correctly that your ANA was 1:640 and it is now 1:1280?

Yes, ANA can indeed go higher like that. The levels are based on the number of dilutions where positive antibodies are still visible and they double each time, so 1:80, 1:160, 1:320, 1:640 and so on. The lower positives are not terribly significant in terms of lupus but your level would be quite high enough for a good rheumy to get you started on some kind of treatment. The results can also vary from one lab to another but I presume that's not the case here. I must admit that I'm not a fan of we'll "sit and wait" but that's maybe because I went through years of no diagnosis (I didn't have a positive ANA). It seems odd that he is so adamnant it is not lupus. Maybe he has his reasons but I too was told that very specifically I DIDN'T have lupus. Then suddenly I had an almost panicky rheumy on the phone saying that yes I did!! Since then, she has been very good I have to say.

It is difficult for me to judge your rheumy's reaction without knowing all the facts but it may well be worth getting a second opinion. Even if you simply feel more comfortable with another rheumy that can be very worthwhile.

I don't know where you live but you could ask for recommendations here in the "find a lupus doctor" forum.

hope that helps a bit,
Katharine
 

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Pollianna
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I don't understand this at all :( I was given a UCTD diagnosis though I fulfill at least four if not more of the Lupus diagnostic criteria but I have sjorens and RA symptoms too. In my case it's just too early for him to tell which way it will go but he hasn't left me untreated cause he knows I am suffering. I have every symptom you describe and I am on Plaquinel. I can't work out why with all of these symptoms you aren't put on Plaquinel. It certainly wouldn't do you any harm if you have RA

The main thing is the treatment and as comforting as it is the diagnosis is just a label. Find a different Rheumy xxx
 

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I think it's a good idea to get another rheumy's opinion on your case. That ANA doubling sounds big/bad, but it's only a single dilution difference. I'm sure you meant it went from 1:640 to 1:1280. It does not mean you are doing "worse" in any way, but it does make it that much more indicative that you have *something* autoimmune going on.

I've had my ANA measured 3 times at my rheumy's, initially was 1:320, then went to 1:1280, and last measurement was 1:2560. They don't bother measuring it anymore. ;)

I hope you are more comfortable with the next rheumy you find, and that he or she is willing to do a bit more for you both in terms of reaching a diagnosis and treatment. Diagnosis is a bit of an art as well as a science, and different doctors will give the same patient different labels. But ultimately treatment is what really counts and it does seem as if you need some treatment at this point instead of a wait and see approach.
 

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Discussion Starter #6
I got my blood results today and I was mistaken the titer went from 1:80 to 1:160 and the titer of 1:640 went to 1:1280. Everything else is within normal range on the Lupus panel. What do all of my symptoms mean and where do I go from here?
 

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Pollianna
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Hi Teri, Is Your rheumatoid factor normal? Are all the other things normal exept the ANA. Am tired and my memories been bad so forgive me if youve posted somewhere else. Is the only thing showing the ANA? I know people can have a positive ANA and not have LUpus...I had a few weird things in my blood but not the total Lupus package, weird white bloods etc and a sky high RF as well as the positive ANA but I think the ANA just kinda put the cherry on the cake if you know what I mean.

I don't know what to suggest. Someone will be along and give you some experienced advice soon xxx
 

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Pollianna
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Hi Teri, don't know about the rest but the RF seems to be ok. My lab says it can be 30 and be ok. Mine was 116 but came down to 59. it's all very difficult when there's nothing really at the far end of abnormal :( it might explain why the Rheumy isn't keen to put you on immunosuppresants. I know i haven't spelt that right :lol:

It will show up, it always comes out what's going on. :hug:
 
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