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Discussion Starter #1
Can someone please help me?

I am more confused than ever!!! I feel like giving up understanding all this and want to cry!

I had my rheumy appointment last month and he said he was going to run the whole lupus tests again since it has been awhile since he ran all of those tests. I have been going to him for about the past three years. My ANA was taken at two different times and was both times 1280. With the ANA results and my symptoms he said I had something auto immune going on and felt maybe lupus/sjogrens. He has had me on both plauqenil and relefen for almost three years now. All my other blood tests have been okay which makes it difficult to make a positive dx.

My first question: If someone has a high ANA like mine of 1280, will it ever come back negative or will it always be high? Will the medications I am on ever bring it down to normal range?

Second question: I asked for copies of my blood results. I have always received them in the past and they are always several pages of the breakdown of each test and their results. This time I received four pages that had hardly anything on them!

The following are the test names:
Page (1)
C3 result 133.0 reference range 90.0 - 207.0 (okay I understand this)
C4 result 26.4 " " 17.4 - 52.2 ( I understand this also)

Page (2)
TSH result 1.94 reference range 0.34 - 4.82 (this I assume is thyroid?
Is it one test?)

Page (3)
Complement, total (CH50 units) result 60 reference range 31 - 66
What is this test? It is in the normal range but on the high side of normal. There was a note with this result page that talked about elevated values of ch50. What is this and what is it for? Is this several tests combined and given one result?

Page (4)
ANA Screen EIA W/REFL TITER IFA (REFL)
ANACHOICE(TM) SCREEN Negative What does this mean? Is this a group of several lupus tests or just another ANA test? If it is just an ANA test, why did it go from being so high twice to negative?

I am sooooo confused! Does this mean I don't have lupus and if not what is wrong with me???? I don't want lupus but when you can put your finger on what is wrong with you it gives you some direction and focus. :sad:

If you have any ideas to pass along, it would be appreciated.

Thanks,
Janice
 

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Hi Janice,

First of all, if your rheumatologist is treating you for lupus or sjogrens, then they are pretty sure you have it, and changes in your bloods now (after 3 years of treatment) reflect response to treatment - a good thing - not that the diagnosis or suspected diagnosis was wrong or needs reversing now.

There are several components to the complement system, conveniently numbered. Mostly with lupus it is the C3 and C4 rheumies look at, but CH50 can also be worth looking at. My understanding is that this is the total of all the different types, so it is less specific. Being at the higher end of normal is a good thing in terms of lupus activity.

The TSH stands for thyroid stimulating hormone. Your results are normal, which suggests your thyroid is functioning normally. If you are having symptoms of hypothyroidism, your freeT4 should be checked too.

I'm not sure about the last test - it looks like just another ANA test. If so, then it probably reflects that the plaquenil is helping you, so great! No well educated rheumy would undiagnose you on that result though. Plaquenil's job is to stop your body producing autoantibodies, so lets hope that that is exactly what it is doing for you.


Hope that helps. Can you ask your rheymy to explain it ? He/she should know what was ordered and why:wink2:

X C X
 

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Hello Janice

I am rather concerned that your doctor isn't inspiring you with much confidence and seems to be leaving you without guidance and explanation about anything. You shouldn't have to be worriting away like this about test meanings or treatment options - there should be a plan.

On your first question about the ANA, it's impossible to be categoric but as Cath says a negative ANA certainly doesn't undiagnose. It might suggest that your lupus is less active even in remission but that all depends on how you are feeling. It is well known that blood tests don't always reflect how people are feeling.
Of course other problems might have developed and be causing similar symptoms that are being confused with lupus symptoms.

It's true that when there are lupus specific symptoms diagnosis is far more certain but the absence of specifics doesn't in itself exclude lupus or sjogren's. As far as ANA goes it only has to have been recorded high on one occasion to 'count' towards diagnosis. That's how variable it can be.
Many doctors never test the ANA after diagnosis which goes to show how unimportant it is. It is not generally used as an indictator of disease activity or response to medications although it might be reflected in the ANA titre.

About your second question, I have never had blood test results set out like that. Often the general blood work and other disease blood work is on separate pages from the lupus oriented blood work.
Had you already had the general blood work done and this lot as an afterthought ? That just might explain the separate sheets.

I would want to know why the ANA was reflex which means (I think) that the other antibody tests will only be done if it is positive. There just might be other antibodies so why not test for them too unless cost is a major consideration.

I agree with all Cath's comments.
And what about that urine test ?

You certainly should have an early opportunity to discuss these results with him.

Hugs
:)
Clare
 

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Discussion Starter #4
Thank you Clare and Cath for your replies.

My blood work has always come back in the normal range with the exception of my ana which as I mentioned above had been very high at 1280. With the ana so high at least my rheumy couldn't dismiss that there really was something going on with me.

He sent me about a year ago to an eye specialist who knows a lot about lupus/sjogrens and sends his patients to him when he is borderline as to his dx to dx lupus/sjogrens or not due to blood work not showing up. This eye specialist is very difficult to get into because he travels the country and now the world educationing other dr.'s. Okay now one would think his word would mean something, right?

I went to him about a year ago (the eye dr. specialist- not my reg. eye dr. who keeps tabs on me due to taking plaquenil) and he did the shimmer test and said, " the good news is you are at least producing some tears, not a lot but some. The bad news is that they are poor quality tears." A bit confused I asked him, "oh good then that means I don't have sjogrens?" He replied, "no it means you DO have sjogrens! Not as a primary disease but a very mild case of sjogrens which means you have sjogrens due to the other autoimmune stuff going on with you."

I left with mixed feelings. Down because I felt like the reality of this was sinking in but yet relieved that now maybe I can explain what is actually wrong with me. If that makes sense!:sad: I have been on the perscription eye drops since then. He may do the tear duck plugs and will let me know when I go back to him the end of this month. Not too thrilled about this!!! :eek:

This last appointment with my rheumy, as some of you know, was not my best appointment! I felt like he kind of blew everything off. I mentioned the eye dr. he sent me to and he didn't even remember him sending him info. on my appt. with him. Which he DID and he found it in my chart and blew it off too! What the heck is with that? He has always been so good in the past and very good at listening. Now with the ana coming back negative I can only imagine how he will act? (has anyone else ever had a high ana and then come back neg. later on? I can't find information on this happening)

I have had protein in the urnine and had the 24 hr. test done, I have a lot of joint pains that jump around from joint to joint and never know from day to day what joints will hurt, I am tired more than not, my hair at the temples is very very thin and I use to have very thick hair and now it isn't as thick as it once was. Dry eyes and my mouth is dry as well. Like everyone here our lists could go on and on. Why is the blood work not showing how I am feeling?????

I just started physical therapy for my shoulder because I complained the pain wasn't going away and he said it was grinding a lot upon movement and at least sent me for therapy which I just started. He will inject it if that doesn't work. He was good about that but when it comes to all this auto immune stuff it is like he freaks out. At least he is treating me and I am on the same medications given for lupus/sjogrens so I guess I shouldn't complain.

I guess I am just confused....again!! I feel like I could sit and have a long good cry but then I hate doing that because afterwards my eyes get so dry and bother me. I hate all of this and just wish I knew what was wrong with me!!!!! Am I crazy? I am so tired of all of this! :(

I am so sorry to have gone on and on. Again thank you so much Clare and Cath. I appreciate your replies. I feel like when I can't go anywhere else I can come here and people understand.

Down in NW Indiana,
Janice
 

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Discussion Starter #5
Clare,

About that urine test? Exactly my thought :mad: .....and my question when I see him next in March if not before! This past appt. was so different than any other ones I have had with him over the past three years.

Thanks again,
Janice
 

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Janice,

As far as your first question, yes your ANA can be high on one test and later test negative. Mine was 1280 and 640 on the first 2 tests about 6 months apart, then was negative on the next test a year later. My most recent one was positive again. All this has been over the last 3 and 1/2 years. The last ANA test was a different ANA test (EIA instead of FANA) so was reported differently (IU's instead of a titer) but was positive at 3.27 with anything over 1.09 considered positive. My rheumie told me that 1.09 corresponded roughly with a 1:180 titer but there really wasn't a way to compare titers to the EIA IU's. She said mine was significantly high again. It triggered the test to reflexively test for a number of antibodies including the Lupus and Sjogren's antibodies (Ds-DNA, SM, SSA, SSB, etc...).

The ANA really only tells you if your body is producing autoantibodies. The fact that yours is negative now just indicates that you are responding to the treatment. It doesn't mean you don't have Lupus or Sjogren's. Mine went back up as I was having new symptoms and I also tested positive for some new antibodies I hadn't been positive for before. It prompted my Rheumatologist to take a look at my current treatment and make some changes. I hadn't been positive for the other antibodies in the past, just the ANA.

Hope this didn't confuse you more, I just wanted to reassure you that the fact that your ANA came back negative is a good thing, indicating a response to treatment.

Nancy
 

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Discussion Starter #7
Thank you so much Nancy for your reply. It was not confusing and in fact I found it very informative and helpful. It helped to hear what you have experienced with your ANA. I do feel better about it. I am thankful he has me on medication. I can't imagine what it would be like if I wasn't! :eek:

Maybe I just need to go find some chocolate and try not to worry about it! :rotfl:

Thank you again,
Janice
 

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Janice,

Sometimes my doctors in the past have re-run all the "lupus" blood tests because they have wanted to check to see if anything has come up positive with the passing of time, although they always ran everything. Sometimes that happens with lupus. I am concerned that you are in pain and are not seeing him again till March. It is possible that he was having a really bad day at your last appointment since you haven't had an issue with him before. Perhaps you can talk to him on the phone? get an earlier appointment? You might remember that my ana is generally my only positive test. My rheumy treats me based on my symptoms and I would hope he would consider adding something to your treatment regimen.

Let us know how things go.

Take care,
karen
 

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Discussion Starter #9
Thanks Karen and I will call him if things get any worse.

He has always said to call him if I have any additional problems. I am going to take things one day at a time and see how it goes. He mentioned before this last appointment changing my pain medication and said sometimes you have to switch meds to help more. I am starting a list to take with me next time.

I hope my next appointment goes better. My ana also has been the only positive blood results so far. I did have protien in my urine and had to have the 24 hr. test done. The 24 hr. test was okay.

Thanks again Karen for your reply. I appreciate it.
Janice
 

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Hi Janice!

I wanted to share with you that my ANA was 1:1280 the first time it was tested. I have had 3 additional positive ANA results ranging from 1:160 to 1:640. My last ANA was negative, too. My connective tissue disease diagnosis still stands, so I don't worry much about the ANA any more.

Terri
 
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