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ozzy69

Confused

13 posts in this topic

Does having a postive anti-SCL70 antibody-positive tell you what type of Sclero you have. I read somewhere that people with diffused have a postive anti-SCL70 antibody-positive.

 

Thanks,

Nina Lynn

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Yes, it is my understanding that it indicates diffuse scleroderma. The centromere pattern is associated with the limited forms of sclero.

 

I've had a positive SC-70 for about a month but not a whole lot of symptoms; just GI problems so far.

How about you?

 

Ana

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Hi,

 

as far as I know, it is more a probability thing....Anti SCL70 normally appears with diffuse, but can also happen with much lower probability with limited....(similar to centromer, where it is the other way round).

 

Keep in mind, that this whole disease anyway is very individual and the whole differentiation is artificial up to the point where even the differentiation follows two different schemes (and in Europe again another) and while it is more probable to have more organ involvement with diffuse, nobody really excludes that with limited either...they just move it to a later point in prediction and less severe...so how much worth is it to have such a marker...?

 

K.

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Hi aka 79,

 

I was dxed about 5 weeks ago. My blood showed the ana " Off the charts", but all the other test came up negative. I have servere raynauds, Bladder problems (IC), nailbed capalties abnormal, Skin tighting face, hands, kidney area, chest, reflux, tons of joint pain, weight loss of 27lbs due to upset tummy. I have been reading so much about sclero that it seems some articles don't always agree. My doctor is not sure if I have limited or diffuse. I go back to her on the 13th of Nov. Since my last appointment 5 weeks ago I have had more skin changes that the knees , chest kidney area has been affected. My gasto doctor is doing an upper & lower scope in a couple of weeks. Sounds like alot of fun! LOL :blink: I know on my Nov. 13th appointment we are going to discuss options for treatment. She mentioned stem cell & chemo but if you not sure if you have difussed or limited I guess you don't decide treatment until you know for sure. This disease is so confusing. From the article I read today it said that you test positive for Anti SCL70 with diffused. I wanted to find out if that is always the case. It seem like I have more isssue that go along with diffuse but I tested negative for Anti SCL70 but have a high ana?

:huh:

Somethings I thinks I do too much reading!!

Thanks so much for your responses.

Nina Lynn

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I totally agree...this whole thing is confusing. I have a very low positive ANA-80 and all else is negative. I am unsure which type I actually have. I have had a positive skin biopsy which showed morphea and the dermatologist had the lab change to show diagnosis of scleroderma. I have hard skin on my arms, legs, chest and face. No internal signs so far but do have darken skin on my legs which the dermatologist stated is blood vessel changes. So my confusion is because I have blood vessel changes is it inside to internal organs or do you get this blood vessel changes with limitied? SO CONFUSED!


Shennen

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Hi Nina Lynn, although originally diagnosed with limited, Rheumatologist now thinks that it is more likely I have diffuse. I have postive ANA, nucleolar pattern but have never tested postive for any specifc antibodies (there are others associated with diffuse as well as Scl 70). You can certainly have diffuse without Scl 70 or indeed even without a positive ANA.

Lizzie

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Hello Nina Lynn

 

What adds to the confusion is that half of the medical profession can't make their minds up either! :blink:

 

From what I have read and been told by my rheumatologist whether you have limited or diffuse is based purely on skin involvement.

 

For limited aka CREST skin involvement is limited to the face, forearms, hands and lower legs, whereas with diffuse disease the skin changes can affect the whole body. This segment of info has been lifted direct from the Scleroderma Society UK website, I don't know if doctors in the US etc have a different criteria for determing diffuse vs limited.

 

I have diffuse scleroderma because I have skin involvement on my feet, calves, thighs, hands, forearms, upper arms, shoulders and did have on the abdomen and chest. I have a negative ANA and have no idea about SCL70 which I had never even hear of until coming onto this site so perhaps UK/US doctors do use different markers to determine diffuse/limited?

 

As if I ain't confused enough. ;)

 

Amanda


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Hi Nina Lynn,

 

Wanted to at least say hello and that I can feel your confusion. Had read somewhere that scl 70 went with diffuse and centromere went with limited but not sure. I was told I have limited (CREST) but have had only +ANA's and nothing specific for scleroderma. I think the biggest issue is skin involvement and where and how much and what symptoms are present. Take care Nina.

 

With gentle thoughts to you and all..

 

Judy


A happy heart is good medicine.

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I have a positive ANA but with the centromere pattern & have been diagnosed with the Limited form, I was only diagnosed last year and it does seem to be developing slowly whereas I understood the diffuse to develop much more rapidly. All my other blood tests came up negative (but in the UK they don't tell you a great deal about results) far as I am aware. I agree it is all very confusing and I think that's because it's systemic and so can affect so many different parts of our bodies both externally & internally.

 

Jen

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shennen0820, Lizzie, Amanda, Judy,

 

Thanks so much for your replies! It does all seem so confusing. If it dxed my skin I would say that I had diffussed rather then limited. Six week ago my doctor said ahe was not sure. Above my knees on the inside have been icthing like crazy. My rib area and chest feel tighter but it feels like it is under the skin. I do well most days but every four to five weeks I get what feels like the flu. I woke up yesterday throwing up and sick all day. It always starts in a sore throat. I not sure if this is the course sclero is taking for me or do I just keep catching something every couple weeks. I meet with my doctor on thursday and I guess we will see what she thinks.

 

Again, thanks so much for your responses.

Hope everyone is doing well!

Hugs

Nina Lynn

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I just wish that the doctors would all get on the same page...My dermatologist said to me that most doctors do not like to treat sclero...my rheumatologist never even ordered basic screening tests that go along with a sclero diagnosis and never even followed up with me after seeing the dermatologist that she sent me too...I don't get any of them! Plus being a nurse for the past 4 years you really do get a clear picture that medicine is kind of a guessing game...trial and error...if one thing does not work then they try another!

 

I'm so glad we have this website to vent together!


Shennen

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Hi,

 

I have had a positive Ana and Scl-70 two years ago. No skin involvement. No diagnosis?

 

I am going to my 3rd and 4th rheumatologist this next month.

 

The only symptoms so far I have been a little diarrhea occasionally and tiredness. I have tested negative for the Scl-70 4 more times which people says does not mean much. It is interesting that the Scl-70 is specific for diffuse scleroderma, but they cannot diagnose you on it alone. WHY? Does anyone know?

My platelets do drop just a tad some times right below the 150,000 mark, but not much.

 

So far all the doctors say I look great, but I feel awful sometimes.

 

Having had a positive for Scl-70 really makes me nervous, but it seems most doctors do not know much about it.

 

Tonya

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Hi everyone,

 

Here is a guy in Texas that is a scleroderma specialist that says that scl-70 is specific for scleroderma, BUT there have been some case where it turned out different.

I printed this out from pubmed, and read the area about scl-70. I think it is 2nd and 3rd page that you need to read. It is interesting where it says below.

 

The clinical relevance of autoantibodies in scleroderma Link: http://www.pubmedcentral.nih.gov/articlere...gi?artid=165038

 

Repeated testing for anti-Scl-70 antibodies is unlikely to be useful in clinical practice; although several recent studies have examined serial determinations of anti-Scl-70 antibodies in patients with SSc, a clear role for this in patient care has not been established. Patients who are initially positive tend to remain so over time [45,68], although in one recent study some patients with milder disease became anti-Scl-70-negative later in their disease course [69]. Three studies have shown variations in anti-Scl-70 levels (determined by ELISA) with extent of disease involvement and even seronegative conversion with disease remission [68-70], although this was not seen in others [51].

 

 

This is just one of the positive parts about having scl-70. I have not read anything that give just a little information talking about the degree of disease.

It can be mild or go in remission. I thought this was interesting. The link is above.

 

Tonya

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