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Elizabeth28

Positive ANA, SCL-70 but no symptoms - are other people in the same situation?

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Hi Mimi g,

 

Welcome to these forums!

 

I'm sorry to hear that you're worried about having possible Scleroderma.

 

I would reiterate Judy's advice; although blood tests can be a helpful technique in the diagnosis of Scleroderma, they are by no means conclusive as it is quite possible to have positive antibodies and yet never develop the full blown disease and vice versa, as many of our members can testify.  I've included a link to our medical page on Autoantibodies to give you some more information, but although like Judy, I have no actual medical training, I suggest that possibly the antibodies in your blood tests could be a result of your thyroid removal.

 

Now that you've joined our community, I do hope that you will be able to feel less anxious as stress can exacerbate any illness. Please do keep posting and let us know how you're faring.

 

Kind regards,

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Thank you Judy T and Joelf.  I have to admit, yesterday was the toughest day ever. Sometimes I wonder, if that test had never been done, we wouldn't know anything because no symptoms were present.  I have to internalize the fact that the diagnosis is based not only on your ANA but symptoms.  I'm curious if there are many out there who test positive with the ANA SCL70 but exhibit no symptoms throughout the course of many years? I guess I am looking for the light here, a good thing to come out of this?  Are there many out there who test positive for years and years and are relatively healthy?

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Hi Mimi,

 

I think we do have members, who've had positive antibodies and yet have never, even after many years, developed the full blown disease. It's impossible to quote any figures as Scleroderma affects all sufferers differently (some much worse than others) which is why the clinical symptoms are more relevant than blood tests. To give you an example, I have the positive AntiPM/Scl antibody which can be an indication of Scleroderma overlap with Polymyositis, but so far (touch wood!! ;)) I don't appear to have developed Polymyositis. Actually I found the diagnosis fascinating and had many hours of pleasure researching all the details of the extensive tests I had from my various consultants. (I am a bit sad though and probably should get out more!! ;) :lol:

 

I've given you a link to our medical page on difficult diagnosis to give you some more information on this very complex disease.

 

Kind regards,

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Thanks Jo, for your advice. It's just so frustrating, like one of the members said before either you do have it or you don't.  So why do doctors place so much importance in the blood tests, if clinical symptoms aren't apparent.  They contradict themselves, and instead, patients live in fear wondering am I okay, am I not okay, am I going to get sick, or is it just one of those flukes?

 

You all have been a blessing!

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Hello Mimig

 

The best thing you can do is go on and live your life only giving the possibility of scleroderma a thought or two if you ever develop any symptoms. I have been involved with these forums for years and over that time people with positive ANA but no symptoms, have come and gone and so far none have returned to say they have developed symptoms.

 

I have systemic and localised scleroderma but negative ANA & SCL70, if you have a look at the video diagnosis of scleroderma it explains that blood test results alone should not be used to diagnose or rule out scleroderma, history and clinical symptoms are key.

 

I hope this helps and take care.

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Hi Mimi,

 

Welcome to Sclero Forums!  I'm sorry that you have concerns about having a positive SCL-70 but no symptoms of scleroderma, and send my best wishes to you.

 

One thing I really can't figure out, from your posts so far, is why did your doctor run the SCL-70 test in the first place, if you are not having any sort of symptoms?  It's not normal practice to run ANA panels on perfectly healthy people. Therefore, it really begs the question, why did your doctor run the test in the first place? 

 

I really hope you take the opportunity to sit down and discuss your test results with them so that you can come to a better understanding of your test results in light of your symptoms (or complete absence of them).

 

:emoticons-group-hug:

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Hello everyone,

 

First, I would like to apologize if my English isn't good or approximate; it's because I write to you from France.

 

I've posted here because I found here some responses that I never had on a French forum.

 

I have, like some of you, the SCL 70 positive but no symptoms. My doctor prescribed me this blood analysis because I have Vitiligo and it can associate to other autoimmune diseases.

 

I don't know what to think... I feel lost, between the immensity of information on the internet and the silence of my doctor...

He just says to me that if I haven't any symptoms, there no need to do some other medical investigations, but I live in the fear, with the feeling it will come some day or another.

 

Is it possible to never have this disease even if the ANA are positive?

 

I'm really sorry for you if you have to live with it and I'll be thinking of you.

 

Kind regards,

 

Helene

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Hello Helene

 

Welcome to the forums!

 

Many people have visited this forum asking the same questions you are now so you're not the only one. The answer is the same, it is possible to have positive antibodies and never develop and symptoms of scleroderma. Equally some people, of which I am one, have scleroderma but negative blood work and it's never been positive.

 

You see, scleroderma should be diagnosed using a combination of clinical symptoms and medical history, using blood work and perhaps biopsy, only to confirm diagnosis and further categorise the type of scleroderma. Have a look at our videos diagnosis of scleroderma, difficult diagnosis and symptoms of scleroderma.

 

If you have no symptoms of scleroderma then I suggest you just see it as an anomaly and carry on regardless. As it is entirely possible you will never have scleroderma you don't want to look back and realise you've spent any time worrying about something that never happened!

 

Take care and if you have anymore questions please post them.

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Hi Helene,

 

Welcome to these forums!

 

Amanda has given you some very good advice, which I hope has reassured you a little.

 

I've included a link from our medical pages on Vitiligo, which I hope you'll find helpful and interesting.

 

Kind regards,

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On 4/17/2009 at 8:04 PM, Elizabeth28 said:

I'm very much interested to know if anyone else on this board has also had a positive Scl-70 but has no clinical signs of the disease? Or, if people tested positive and then - at a later point - developed symptoms?

I too have continually had positive Scl-70 results. It started at 6.8 and is (as of my last tests in August) now at 4.6. It's fluctuated between those numbers for the last 7 years but is always positive. Other than Raynaud's, gastric reflux (which I've had for years), some joint point, and photosensitivity, I have no other symptoms. 

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Hi Siswithsoul,

 

Welcome to these forums!

 

I hope you will enjoy being a member of our community and continue to post on the Forums.:happy:

 

Kind regards,

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Hi Siswithsoul,

 

Welcome to Sclero Forums!  I may be wrong (I often am!) and I have no medical training at all. But you might be tending to the lupus-y side of things; and SCL-70 is positive in lupus sometimes, as well as scleroderma. 

 

Generally speaking, the sun sensitivity would be much more of a lupus thing, and about 25% of SLE patients have the SCL-70 antibody.  I'm certainly not saying that's the case, but I am pointing it out for others who hit this thread with an SCL-70 question.  The two illnesses are very close, so it's not unheard of for many of us to be diagnosed wrongly with one or the other,  or even to have them in overlap. 

 

:hug-group:

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Hi Everyone, 

 

I really hope this thread gets checked? I have a positive ANA found on blood work done in 2015. Given the "million dollar workup" by a rheumatologist and all was negative and no signs and symptoms of anything either (although looking back while writing this post I realized my scl-70 was 0.3). So I was told to not worry since the ANA titer was low ANA 1:80. Then I got pregnant and had my son in 2016 and went for a regular physical about 7-8 months after delivering and had no symptoms but was found to have Hashimoto's. This was what we all assumed was my ANA manifestation. Then my doctor repeated my ANA (it wasn't necessary but he did it) at my physical appointment  a year later and it was positive again (which we already knew) and this time my scl-70 came back positive as well at 2.1. I was then sent for cardiac and pulmonary testing and to a Rheumatologist and since all was negative with the workup and she saw no physical signs, she told me to ignore it and that I didn't even need to continue to follow with her but to contact her if I showed symptoms at any point and reviewed what those were. I was then tested in August 2018 at a physical yet again and my SCL-70 was 1.4. Still no symptoms and still don't follow with anyone.

 

I have been VERY happy about all the doctors thinking it's just a false positive BUT I do live with it in the back of my mind and at this particular time I am VERY stressed about this. I did have a second child AFTER having known that my result was false positive but now I am thinking of having a third child and I just feel like pregnancy wreaks so much havoc on your body and I don't want to "rock the boat" and cause a false positive to become a "positive". I talked to myprimary medical doctor who advised talking to my obstetrician. After talking to my OB she advised I talked to a perinatologist which I did. Now after talking to the perinatologist she advised me to talk to a Rheumatologist which I have yet to do (I am too scared!)

 

This was a door I tried to close back in 2015 when it all first was found and I never wanted to reopen this door unless something came up symptom-wise (which thankfully it hasn't). I guess the reason I am even thinking about this is because I don't want to "rock the boat" when I'm doing and feeling good now and still a false positive and I am having a hard time finding ANY information on people with false positives for SCL-70 who get pregnant and then may or may not go onto become positive or stay negative. My doctors all think I'm had great pregnancies and deliveries so far and should just go for it and they'll monitor but to me it's a big decision since it seems so far that nobody can tell me my risk or anything. Any help would be  greatly appreciated, I'm really struggling and scared to have another child but I also don't want to miss out in my life just by being scared of something that could never be.

 

Thank you so much in advance  and sorry for the long wind!

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Hi JS1616,

 

Welcome to these forums!

 

For information regarding your blood tests, please see our sticky thread here.

 

As to whether having another child will cause your blood test results to change, I'm afraid it really is impossible to say (which is probably why your doctors have been unable to advise you and have suggested that as you have not had any problems previously, you should go ahead with another pregnancy, should you so desire.) Blood test results can be different each time they are taken (and can even have different results from different laboratories.)

 

The only thing you can do is become pregnant and see what happens!

 

Kind regards,

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On 4/17/2009 at 8:04 PM, Elizabeth28 said:

Hi everyone!

 

After a battery of blood tests by an over-eager, new family general practitioner last October, my ANA panel came up positive with a Scl-70 of 1.6. My general practitioner immediately 'diagnosed' me with an autoimmune disease, but did not specify which one - it was left to me to find out when I went online after my visit to him. To say that I was horrified would be an understatement! :-(

 

I had initially visited my doctor regarding anemia (due to heavy periods), occasional muscle pain and anxiety. It may be worth noting that a year earlier, I had nearly died from an anaphylactic reaction to antibiotics, which left me in hospital for 5 days. I was tested at that time for ANA, etc and came up negative for everything. Obviously, the current antibodies have developed since that episode.

 

I waited 3 months to see a rheumatologist, who is fortunately a specialist in scleroderma, and she could find no symptoms or clinical evidence of the disease. She urged me to not worry, and - after some serious prodding from me - guesstimated my chance of developing the disease as 1%. I'm not entirely this optimistic, however, having seen many different values assigned to the positive predictive weight of the Scl-70 test.

 

I have read that some research conducted in Oman, Canada and Poland using blood donor samples that Scl-70 can occur in healthy individuals who do not show any signs of the disease. (The other side of that argument, as some rheumatologist hazards, is that they may develop the disease at a later point.) I also gather that a proportion of individuals who test positive for ANA/Scl-70 but are absent symptoms - even though the SCL-70 test may be 99.5% specific (!!) - will NOT develop the disease. This apparently happens when we take into account the sensitivity of the test (e.g. the number of diagnosed individuals who test positive), the specificity (the % of negative results that are 'true negatives') with the incidence/prevalence of the disease in a given population. It involves a bit of math, which is not one of my strengths, but seems to make sense regarding the prognostic value of rheumatic testing.

 

Five months after the fall blood tests, I was tested again and my latest results are still positive for ANA, but the Scl-70 has dropped a bit from 1.6 to 1.3. I gather antibody levels can fluctuate.

 

I'm very much interested to know if anyone else on this board has also had a positive Scl-70 but has no clinical signs of the disease? Or, if people tested positive and then - at a later point - developed symptoms?

 

I'm a mother, a wife and a very busy university-based researcher. It's a daunting time in my life, and unfortunately - as I gather is the same for many other posters - we rarely have the opportunity to meaningfully connect with our doctors or rheumatologists, or to receive the information or guidance which is essential to helping us maintain hope or optimism, regardless of the current state of our health.

 

With best wishes to everyone on the boards!

 

Elizabeth

Canada

 

 

Hello,

I have known that I have had the antibody  Scl 70  for ~ 4 years with no symptoms.  The number continues to increase slightly but I am blessed to be symptom free.

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