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The Anti-body Lottery

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#1 ErinF


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Posted 15 March 2007 - 06:02 AM

Hi everyone! I've been reading about antibodies in the medical area here and I'm just amazed and how many different antibodies are associated with sclero. Is it unusual for someone to have multiple antibodies? I have Scl 70, ANA, anti-thyroid, anti-phospolipids, and anti-Ku. (I can hardly find anything on the Ku. What is that anyway?) It's almost as if every time I have blood drawn I get more and more of these stupid antibodies! Anyone else all over the board with these things too?

Thanks (and thanks again for everyone's encouraging words...I'm trying hard not to be a sad sack all the time B) ,


#2 janey


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Posted 18 March 2007 - 05:42 PM

Yes, figuring out the whole autobody thing is quite a challenge as well as an education. My doctors don't use antibodies testing much so I can really relate to what you're going through in trying to figure out all your bloodwork. I did however find something on anti-Ku at emedicine.com. It was the page for dermtomyositis/polymyositis, another connective tissue disease and one commonly found as an overlap with scleroderma. I have scleroderma and polymyositis. Anyway, when you scroll down to myositis associated antibodies it says,
"Anti-Ku antibodies are found in patients with myositis overlapping with other connective tissue diseases." I guess I should have some of those myself.

Since your doctor is testing for all these, he should be able to tell you what it all means so don't be afraid to ask.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 RememberingToSmile


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Posted 19 March 2007 - 02:04 AM

I like the topic title you selected - "The Anti-body Lottery" It seems like many have symptoms that need to be treated without specific ABs present ---- and/or have Abs for a specific expressions --- yet no symptons requiring treatment.

I hope they are taking good care of you and doing your own research is a smart move.

I've only had one work-up for anti-bodies [last year] and all they found was the high ANA. My case is easy, though, because my symptoms are clearly/typical early diffuse with myositis. If the symptoms were less clear, I guess any positive Antibody results would help the doctors be more confident with their diagnosis and planning.

Like others - I regularly give blood to screen CBC, liver, kidney, thyroid function, ESR, CRP, and other chemistries. Add in the few tubes for the university research projects. I'll ask at my next visit whether my doctor has plans to retest the Antibodies in the coming years.

I'll let him test if he sees the need, but I'll have some questions. What if there is a specific antibody without any physical symptoms? What use is the information in my case? Does it just put up a flag to watch more closely for symptoms? In my case, I already get routine echo/pfts to look for sub-clinical disease activity. What else is there?

I'm just thinking out loud here - Best of luck.


#4 ErinF


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Posted 19 March 2007 - 02:05 AM

Thanks, Janey---this makes total sense now. My primary care physician thinks I have Overlap Syndrome, between sclero and some kind of myositis. I get a pretty bad rash on my face and around my eyes every now and then (sometimes it goes away as quickly as I get it, but there's no warning as to when I get it, although it relates to when I feel most tired). She also said that sometimes overlaps are better than having one alone, does anyone know if that's true? Maybe she's just trying to be hopeful :D


#5 ErinF


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Posted 19 March 2007 - 06:06 AM

I have the same questions as you! It seems like some doctors don't rely on AB testing at all, while others really use it for diagnostic purposes. It seems like antibodies are used more if there are symptoms, but sort of ignored if there aren't any symptoms. Considering that many, many sclero patients don't have Scl 70, it would seem that the antibodies certainly don't cause the disease, same with the other antibodies. My primary care physician thinks that people with antibodies but no symptoms are in some kind of pre-disease state that may or may not evolve into a disease, but when I asked about people with diseases but no matching antibodies, she said "Well, I guess that's the $64 milliion question." The idea that having the antibodies with little or no symptoms is kind of scary--sort of like a time bomb waiting to go off, if you know what I mean. On the other hand, having all kinds of symptoms but never having blood tests to back anything up has to also be really frustrating to patients who anxiously await a diagnosis. I find this whole thing to be a roller coaster ride--like someone's going to spin a wheel and whatever the arrow lands on is going to be the diagnosis. Four years ago when I was trying to get pregnant and not miscarry, we discovered I had the Anti-phospholipid antibodies and so I underwent IVIg treatment (4 times) and did eventually get pregnant and not miscarry. A girlfriend of mine who was in medical school was appalled at the IVIg treatment--her words were "None of us know what any antibody really means, so to give you IVIg seems irresponsible to me." Now I read about IVIg treatment being successful in sclero, and I wonder if it's why I felt so awesome for the several months after I had the treatment!