[Lily80]

I posted a while back about my ANA as always coming back negative. My most recent ANA is 1:640 (homogeneous). My most recent rheumatologist thinks its nothing to be concerned about, even though I do think he truly believed I was sick. That's because the other tests (c3, c4, urinalysis, Sjogren's tests, etc. came back fine) Anyways, just wanted to vent. I just thought that if my ANA was ever positive it WOULD make doctors believe me more and take me more seriously. Anyways, I'm getting another opionion from another rheumatologist, so I'll be on to rheumatologist #3. Rheumatologist 1 agreed with me that it could possibly be lupus, but didn't seem much concerned, although he was the one who told me my ANA might eventually turn positive. Maybe I should try him again.

I have had history of low wbc count, low lymphocyte count, low rbc---I'm back on iron again from my regular doctor, High Immunoglobulin M, High Epstein Barr titer.

Anywho, I think I have reason for concern of the elevated ANA....or am I crazy? I would write it off if I felt fine, but I've felt like **** for years and years now. Any input?
Was thinking of maybe getting anticardilopin? blood test and syphillis test. I've read where those can aid in diagnosis. Anybody have any thoughts on that or would that not be worth my time?


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Here is my old post.
Hello all,

While I don't officially have Lupus, it has been suggested by my current rheumatologist. I'm 28 and have been very ill since I was 23. I was had some fatigue issues and a few symptoms before then, but it was about 5 years ago, that I realized something is definitely wrong. (I've had about ever test imaginable and have tried a lot of different medications over the years. I've seen about 20 doctors and have spent around $25,000 and that's with health insurance. So, I'm definitely not new to being sick, just new to learning the "ins and outs" of lupus.)

My ANA has always been negative (4 times). My rheumatologist says he's seen several people whose ANA doesn't become positive till years after symptoms have started. But, I've yet to come across a person like that with Lupus. Does anyone have experience with their ANA being initially negative and then later positive? I realize there are a lot of tests that can point to lupus, but the way I understand it is that typically none of those will be explored until the ANA is positive. Also, my U1-RNP, anti-DNA, the anti-sm antibodies are negative.

My main symptoms:

Extreme Fatigue (5 years)
Hair Loss (3 years)
Constantly red face (2 years)
Joint Pain (1 year) (right hip, and all fingers and toes, middle finger joints swollen since last year)
Extremely pale
Weird rashes
Extremely sun sensitive (1 year)

-Anyways, I'll stop there, but would love an insight. I'm just frustrated (Couldn't you tell and need any good info.

 

[Lily]

Hi Lily,

Do you know if the IgM they are referring to is because of the positive Epstein Barr? They measure it to detect recent infection from EB, and it can show up in some cases for 6 months after infection?

Your ANA is quite high, high enough for there to be some kind of connective tissue disease going on, especially as you have other symptoms that fit something like Lupus. I have no idea whether a recent infection with Epstein Barr would make that happen but I shouldn't think so, it's more usually lower titres that are associated with viral or bacterial infection.

I think it's wise to try and see that first guy and take these results with you, he would probably sit up and take notice now the ANA is highly positive.

Good luck and do let us know how you get along :hug:

love
Lily

 

[Lily]

Oh sorry I forgot...............but did this recent Rheumy test you for DsDNA along with the Sjogren's test and do you know if he also ran the rest of the ENA panel not just the Sjogren's ones?

He really should have tested the Anti-Cardiolipin and Lupus Anticoagulant as well

love
Lily

 

[Lily80]

In response to your question...
My DS DNA AB was tested twice and it came back negative.
The SSA & SSB were done on a separate "test" date than the ds DNA blood test, if thats what you mean.
What's the ENA panel? I don't think I've had that drawn for. ???? I'll have to google that....
The Epstein Barr AB VCA IGG was 2048 (range was 0-99) But, its been elevated for years like that.
The Immunoglobulin M was something totally separate from the epstein barr test. It's a test that is associated I guess with Waldenstrom's Macroglobulemia and multiple myeloma...I know I didn't spell that right. Well, it appears I guess that I don't have Waldenstrom's, but I just wonder if anybody on these boards with lupus ever had a high Immunoglobulin M. The dr. said mine was high, but it had no significance.

My c3 was normal @ 109. (99-223 range)
My c4 was normal @ 30. (10-40 range)
CPK/creatine kinase, total was normal @ 55. (24-170 range)
SM/RNP Antibody was negative.

Things that were out of range recently:
Monocytes were 2.8 percent, low (range 3.4 - 9 %)
MPV 11.2, high (range 7.2-11.1 fL)
I went to my regular doctor today to get his feedback on what he thought about the 1:640. He said it's not all that high and given just that I had a negative ANA just weeks before that that it is most likely a false positive. He is going to retest it since it has been almost 2 months ago. He said he has learned from rheumatologists that the ANA is nothing to be concerned about until it is >= 1:1280. But, I've read plenty of these boards and other places that a lot of people with lupus have ANA's around 1:320 and 1:640. So, I agree that it could be a false positive, but I still think it's a high false positive, but I'm still iffy about it. He also said he would do the anti-cardiolipin test. And he's going to request that I get iron by iv for a while to get my "iron counts" up faster. I've taken oral iron off and on for years. Anywho....I sent my labs off to a Dr. at a Lupus Center here in the United States several weeks ago, who is going to look over my file. Their office said if she thinks it could be lupus, then they said she'd set me up for an appointment with her. At least, since Lupus is her primary focus, I'm sure she sees all variants of lupus and I would feel better if she says its not lupus, then I could feel more confident about ruling it out.

Katharine on the boards mentioned she was diagnosed by skin biopsy. I wouldn't mind getting that done, but I just would have to find a doctor willing to "explore" that option.
Thanks for your input! You seem knowledgable, so I appreciate it very much!

 

[Maia]

From what I've read over the years, most doctors will sit up and take notice of any ANA titre of 1:320 or greater, as that is the point at which it is *unlikely* to be a false positive. A great number of people in the overall/healthy population will test positive to ANA at titres of 1:40, 1:80, and possibly 5% will test positive at a titre of 1:160. But 1:320 has only a 1% risk of it being a false positive = not due to autoimmune disease of some sort. And titres beyond that, such as yours, are even less likely to be false positives.

ANA can be positive due to recent viral infection(s), but usually at a lower titre. I'm glad your GP will be repeating the test, and also testing anti-cardiolipins (and hopefully also lupus anti-coagulant too).

It appears as if you have had the ENA profile done, as you've had the antibody tests included in that Extractable Nuclear Antigens profile (SSA, SSB, RNP, Smith...).

I have had an elevated IgM, it was twice the upper limit of normal. In my case it was due to a new bacterial infection that was brewing at the time but not diagnosed yet. They never even retested it after my ear infection was diagnosed as they were so certain it was only due to the new infection!

I'm very glad you sent your records to a specialist for review, hopefully you'll get to the bottom of it very soon. Have you had some of the more specialized blood tests done to look into the cause of your iron deficiency? Sometimes it is due to autoimmune disease, and there are some tests that can help sort that out too. Hope the infusions by IV help a lot

 

[Lily80]

Thanks for the info....your thoughts on the ANA were what I was thinking. Once I get my new labs, I'll see whether the ANA is at now.

My Immunoglobulin M was like yours, twice the upper limit. The "upper limit" in that lab was like 200 something and my level was 400 something.

As far as the iron, they've done a lot of tests. One doctor will be concerned and the next not. But, hopefully the IV's will help.

Thanks!

 

[LolaLola]

I am one of those people who had a negative ANA for years. This was despite being really ill. Dr. D'Cruz at St. Thomas' was recommended to me and started me on treatment. My ANA eventually became positive sometime later.
x Lola

 

[Lily80]

LolaLola....
thanks for the info. So, did you officially get a diagnosis of Lupus or are they giving you treatment as its like Lupus? Just curious.

That Dr. is in London, am I correct?
I'm in the US, but at this point would travel and have traveled just about anywhere if it meant I could get a diagnosis/treatment. As I am sure you can relate. LolaLola...if you don't mind my asking how are you doing now since being treated? And what meds have worked/haven't worked for you?

 

[LolaLola]

Lily, Yes Dr. D'C. is in London. I was diagnosed with Lupus long before the bloods changed. I am on Mepacrine as I am allergic to Plaquenil, Prednisolone and Methotrexate, plus all the usual pain killers etc. I am also on blood thinners.
Although I am not well and do have other things wrong too I have to say to you that I am very much better than I was before I started treatment. If Dr. D'C is presented with the symptoms he will often treat with Plaquenil at least as it is so safe it is a good starting point. Before I started treatment I was so weak I could not lift my feet with shoes on,was in constant pain and sweated profusely day and night.
I hope this is some help to you. I was getting nowhere with local Rheumys just a waste of breath.
My Daughter also has Lupus and APS and Dr. D'C been excellent with her.
x Lola

 

[Lily80]

? for LolaLola

LolaLola,

I read where you said you were diagnosed before your bloods changed....at that time, what tests did the doctor "go on" besides your symptoms. Just curious, and wanted to see if you remember what some of those numbers were so I could compare my levels.

 

[LolaLola]

Dear Lily, I hope this will help you. When I first saw Dr. D'c I was really ill, could hardly walk, was flushed and sweaty with pain and had livedo reticularis and a lot of skin lesions. Also I had a fairly complicated obstetric history with several miscarriages and two very prem births with eclamptic convulsions and a BP which could be as high as 230/150 and was not responding well to BP meds.
This was strongly indicative of APS especially as I knew that my fibrinogen count had been abnormally high after the children were delivered.

Apart from the fact that I looked so awful what convinced him despite lack of any firm blood results was the fact that my GP at that time was a good man who was desperate to help. The GP had tried me on high dose steroids without telling me what to expect as he wanted to test me "blind" to see if I had a good response which would indicate something inflammatory. Within two days I looked and felt 20 years younger, my brain was clearer, I could walk, my skin started to heal, I could write whereas before it not only hurt too much but was hardly legible. I could go on and on, but basically the strong response to steroids gave them a very good pointer. I understand they don't often test people like this these days as they feel that when you have to cut the high dose and become ill again it is a bit cruel. I admit it was unsettling but in my case I am glad the GP did this. When I was on them it was like a curtain had been lifted and I had gone into a different world.

Dr. D'Cruz believes in treating the symptoms and listening to the history rather than going on blood tests. Although the tests became positive much later for both SLE and APS by that time I was being treated anyway.
I have improved a lot since then, I am still not good but I do have a couple of other conditions too,which doesn't help.
I can now generally keep the pain under control, fatigue is an awful problem and I don't walk well but it is much better than it was.

I hope this helps you, I know it was an unconventional way to be diagnosed but I am grateful for it. The local Rheumy did not know why steroids worked, said it wasn't lupus as I "wasn't mad enough" and said I could stay on 15 mgms steroids for life if I wanted without further investigation. Luckily by then other Lupus patients on the net had educated me enough to know how unacceptable that was and pointed me to Dr. D'C.