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Ashleybritton
08-31-2012, 11:17 AM
I tried modifying my post "lupus without symptoms", but I can't figure out how to do that so this goes along with that thread.

ANA 1:80 speckled pattern homogenous pattern
SSA -131
Smith antibodies - 131
Scl-70 antibody - 217
JO-1 antibody - 168
Histone antibodies U - 122

These were all high, but my lab results don't show reference ranges and I'm struggling to find them online. Obviously something is going on. I can't have all of this and it be nothing. :-(. I'm just devastated. Would anyone mind sharing their insight on what these values mean? I see the rheumatologist in a week and a half, but I'll do better emotionally if I'm not caught off guard.

Thank you!

Ashley

Ashleybritton
08-31-2012, 12:31 PM
I forgot these readings as well:
C3 serum - 75 (low)
DS-DNA antibody - 234

Deemarie1223
08-31-2012, 02:06 PM
I'm not a doc, but I thought I read an article either here or somewhere else that talks about the ana and how it doubles daily. The first solution would be 1:40, the second 1:80, the third 1:160 and so on and I *thought* it was said that an ana under 1:160 was considered normal. Your would me that it only took 2 dilutions...ill try to find the article and paste it

Deemarie1223
08-31-2012, 02:22 PM
If you search ana titer range you will find lots of info. Most say 1:40 is neg and anything under 1:80 is considered very low/negative. However there is stuff you can find about the compilent tests (c3, c4 etc) and it also gives %s and ranges. I think your best bet is to talk to ther rhuemy, know there might be an AI issue, but go with the most positive attitude you can. Your ana is very low. But anas do flucuate too....I was gonna post some links but there was too many so if you search ot, you can formulate your own opinion:) good luck!

Ashleybritton
08-31-2012, 04:07 PM
Does the ANA supersede the compliment tests? Specifically the Scl-70?

Derrie
08-31-2012, 04:31 PM
Does the ANA supersede the compliment tests? Specifically the Scl-70?

ANA and complement are different things. Scl-70 is one of the ANAs ("ANA" means anti-nuclear antibody, which is a general term that encompasses a number of different antibodies that may be present in autoimmune disease -- see http://en.wikipedia.org/wiki/Anti-nuclear_antibody for more info on ANA).

For example, Scl-70 antibodies are generally associated with scleroderma (http://en.wikipedia.org/wiki/Anti-Scl-70_antibodies). Scl-70 is one of the specific ANA antibodies (when you have a positive ANA, the lab generally does a "reflex panel" to check which antibodies, specifically, are elevated).

Complement is different. The complement system (see http://en.wikipedia.org/wiki/Complement_system) is part of your immune system, and low complement levels (like low C3) may indicate immune activation or infection. So, having low complement levels can support a diagnosis of autoimmune disease.

However, the most important thing to realize here is that none of the results are diagnostic. Your doctor will look at your lab results and use them as part of the bigger picture along with your physical exam, and imaging studies, etc., to figure out your diagnosis. So please, please, please don't worry yourself too much as you read about what these different test results can mean. If you're like me, you like to be as well-informed as possible, but I know from experience that it's easy to go down the rabbit hole of worry as you read more and more about what things could mean.

Also, without reference ranges, it's hard to tell too much about your results. Like, with my lab, C3 in the 70s is barely low, and my doctor doesn't raise an eyebrow till I'm in the 50s at least. But I've seen all sorts of reference ranges for C3 with different labs.

Out of curiosity, did your doctor do a Total Complement (C50 or C100)? Did he check your C4?

Please let us know what the rheumatologist says-- I'm really curious!

Ashleybritton
08-31-2012, 04:55 PM
I'm not sure if it was a C50 or a C100, but my C4 was normal at 21. I just wish the Scl-70 is a false positive. I'm concerned by how high it is.

Ashleybritton
09-07-2012, 06:45 AM
I just wanted to give an update. I saw the rheumy yesterday and was diagnosed with SLE. She said I might develop scleroderma, or I might not. I am going to see a scleroderma specialist in Houston and have my labs rechecked. I'm a little shocked. People wait years for a diagnosis struggling with numerous symptoms, and while I have internal symptoms - I feel fine. No joint pain, fatigue, etc. It's just so odd how quickly things changed. I'll take plaquenil everyday and steroids when I have a flare up (which I'm not sure how I would know I was having a flare up as I didn't feel any different the last time I had one). Otherwise I just check back in with the rheumy 4 times a year. Blah. At the same time I'm thankful to be getting the help I need, but I sure wish I didn't need it.

Also, I have to take my son in for an echo because I have SSA antibodies, and any future children we have will have a 30% chance of developing an autoimmune disorder. I'm not sure if I'm comfortable with that.

Lastly, I could not stand her! She was so insensitive and dismissive. Now I'm going to have to find a new rheumy because I certainly don't want to see her 4 times a year for the rest of my life! :-)

Thank you again for all of your help.

Ashley

jmail
09-07-2012, 03:13 PM
... Blah. At the same time I'm thankful to be getting the help I need, but I sure wish I didn't need it...


Wish you didn't need the help also, but there it is, and at least you know and can avoid some of the issues with that knowledge. It's got to be stressful & bothersome worrying about your children, but again, at least you know. As for the doctor and "personality", that's important for me also. Most of the rheumies I've dealt with don't need to see you that often, once they have their "routine" established. My hematologist is like that tho, sometimes seeing me each month, dependant upon symptoms. She's a nice person though, so it's not so bad... tic

steve.b
09-07-2012, 10:45 PM
.....Can give you the names of my team of doctors here.

we have a thread http://forum.wehavelupus.com/showthread.php?10957-Who-and-Where-Is-Your-Doctor

please feel free to add there names to this thread.

steve.b
09-07-2012, 10:48 PM
...... I'm a little shocked. People wait years for a diagnosis .....

i am glad you have found someone who is switched on.
pity they are not someone you can relate to.

if they are good at there job.....
therefore good for your health......
is it worth persavereing with them?

just a question..... and only you can answer it.

magistramarla
09-08-2012, 02:10 PM
Hi Ashley,
Welcome to WHL. Are you anywhere near San Antonio? I had an incredible rheumy there - Dr. Emily Pineda. There is a long waiting list to see her, but she's worth the wait. I have many of the same test results that you have. SSA and SSB can indicate Sjogren's, which is a close cousin of SLE. Dr. Pineda called my mixture Mixed Connective Tissue Disease and started treating me.
We moved, and my new rheumy is very dismissive. When we move back to SA, I'll be glad to see my great doc again. My PCP there was a personal friend of Dr. Pineda. Her name is Michelle Anson, and she's the best PCP I've ever had.
Hugs,
Marla