Posted 10 May 2007 - 09:42 AM
I decided to start my own thread as to not get lost in Mike's so I apologize for repeating my previous post....especially to the support specialists that work so hard for us.
As most of you know, I have Systemic (sine) Sclerosis (sine, meaning without skin involvement but WITH all of the other fun stuff like GERD, haital hernias, Raynauds, Telangiectasias, progressive Interstital Lung Disease, etc.).
I read Mike's interesting article which brought up the topic. The article gives prognostic markers for those with the disease, according to specific autoantibody patterns. I happen to be slc-70 negative, but anti-Th/To antibody is positive.
Does anyone else know their ANA patterns and if so, have you discussed your prognosis with your Dr.? I ask this at the risk of bringing people down...please know, this is so far from my intention.
Unfortunately, my Dr. is out of town for the day and I must wait until he has access to his laptop to further discuss this with him. Apparently, he has written an article on my ANA pattern specifically because I guess it's somewhat unique. What is NOT unique about this disease?
Gratefully, I have been feeling really well...thanks to modern medicine and I hope everyone else is doing just as well.
Hugs to All,
Posted 10 May 2007 - 11:35 AM
I have a positive ANA with a centromere pattern. According to the lab report from LabCorp , the pattern interpretation is PSS with Crest syndrome variable . I don't know what the actual value was. I do know the very first one I had was 1:3000( in the 3000 something range, I don't remember the exact number. I remember my doctor saying he had never seen one so high. It was also the centromere pattern then and that was around 1997 or so.
I had a RNP Antibodies which was 49 and negative is less than 100. Smith Antibodies was 10 negative is also less than 100 These last two were done 3/19/2007. The last Antiscleroderma-70 antibodies was done 10/18/2006 and that was 7, with less than 100 being negative. Also on that date I had a Sjogren's Ab, Anti-SS-A-SS-b, Sjogren's Anti-SS-A which was 7, with less than 100 being negative , an Antinuclear Antibodies Direct was 474 with positive being greater than 120, RNP Antibodies was 22 and Smith Antibodies was 3 both of those are negative at less than 100. My C-Reactive Protein is always greater than 35 with normal limits being 0-4.9. I haven't had a sed rate in a long time because they do the CRP. Two of my liver chemicals are also elevated and I'm told they are just going "to watch it".
Now, do I have any idea what all this means, mostly no. I go to the rheumatologist every three months and they draw labs, but I never get an explanation of the results. That's my fault because I guess, deep down, I really don't want to know. The doctor has never given me a prognosis and once again, that's my fault for not asking. I'm sorry this is so long and confusing. I have requested copies of my last labs and I'm still waiting for them. When I do get them, I will let you know the results. When I go on my next appointment I will ask these questions. Any insight you can give me, I would appreciate it. I finally had to stop work in Feb 2004 (Friday the 13th was my last day, LOL.) It took me until Feb 06 to get Social Security Disability (and a lawyer). Of course I was denied several times. It took having an "administrative Hearing" to finally be awarded. My lawyer said anyone under the age of 50 has a super hard time getting benefits. (I was 45 when I first applied.)
Well, I'll keep everyone informed of labs when I get the results.
Barbara aka relicmom1
Posted 10 May 2007 - 12:17 PM
I had an ANA pattern of 1:320 homogenous and an SCL 70 of 2.18 (anything over 1.0 considered positive according to this test). The lab paperwork reads, "SCL 70 antibodies are specific for progressive systemic sclerosis and indicate a worse progress, including advanced forms of interstitial lung disease." I am also anti-ku positive, although only weakly. My rheumatologist says I am essentially "nothing" at this point, because I only have aches and pains, although I did have a rash and weird purple eyelid skin that is indicative of dermatomyositis (but the tests were negative for that) and as of yet no Raynaud's or anything else. He also said the ANA pattern being homogenous is "better" than having it speckled nucleolar, as that is really indicative of full-blown SSc. He contemplated giving me the diagnosis of UCTD but he said he's not even comfortable with that. The resident said if it's anything, at this point it's indicating a very mild course because I developed dry eyes over 10 years ago and he said that I should have progressed much further by now if I were going to. So basically even though I have SCL 70, whatever I have is mild right now and may stay that way (thankfully!). He also reminded me that antibodies, while helpful, cannot be used reliably because they can be all over the place and never actually mean anything. I hope he's right!!!
Posted 10 May 2007 - 02:05 PM
Hi Erin and Jennifer ,
Gareth's ANA came back positive for the speckled pattern from Dr M's lab and his rheumatologist said that it didn't mean much of anything.
Posted 10 May 2007 - 02:39 PM
Here is a link to the ISN, Scleroderma Antibodies. It describes the different aspects of the ANA patterns. I refer to it often and find it very helpful.
From past experience, I have found that the ANA pattern along with other abnormal labs and symptoms means something. The ANA usually indicates that there is some autoimmune stuff at play, the pattern might give clues as to what subset of Scleroderma one has or is a risk for getting, and the symptoms just support the facts.
On the other hand I have also heard from many of my doctors that there are a handful of people with a positive ANA and it means "nothing".
What really matters is how you are feeling. If you are feeling healthy and the doctor gives you the thumbs up, I think that is GREAT!
Posted 10 May 2007 - 04:05 PM
I don't even know what the SM, RNP, SS-A/RO, SS-B/LA, and SCL-70 mean on this.
Thank you for any help.
Posted 10 May 2007 - 04:55 PM
I had to do some homework for this ? and look through my initial testing (done 2 year's ago this month---hard to believe!). I have a positive ANA --pattern being "Speckled, Diffuse, Nucleolar, Cytoplasmic staining". My SCL 70 test was also positive showing Antiscleroderma 70 Antibodies: 570. Though I didn't know what any of this meant at the time, I found out soon that it was indicative of diffuse SD with a not-so-good-prognosis.
I also soon found out that I had early lung involvement (also not pointing to a great prognosis) but I can happily report that even with a firm diagnosis of diffuse SD WITH interstitial lung disease, I am doing really well 2 years later. YAY so far! Maybe due to the Cellcept, maybe to healthier living, maybe due to nothing that I have any control over. Whatever! I think it is great to question test results and find out as much as we can about our disease, but also remember that the tests don't always give us any FOR-SURE answers (which is what I wanted at first). Now, I just try to stay positive and not worry about what could happen or the results of the round of tests. (Remind me of this before my next PFT!).
Big hugs and kiss the puppies for me.