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Anticentromere antibodies decrease

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In September 2017, I was diagnosed with scleroderma based on positive Anticentromere antibodies result.  New results from this month show marked decrease and antibodies are now in the normal range.  Is it possible to receive a false positive?  I have been taking Plaquenil since September.  Would that cause a decrease in antibodies?  

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Hi Tate,

 

Welcome to these forums!

 

The problem with positive blood tests is that they're not always the be all and and end all of a scleroderma diagnosis. Far more important are the clinical signs and symptoms. Although blood tests help in the diagnostic process and are a useful tool when used in conjunction with other medical tests, it is quite possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. We do have numerous threads on this subject. Also blood tests can vary a lot each time they're taken, which is why a scleroderma diagnosis is invariably complicated and not very straight forward. It's also possible to be diagnosed, undiagnosed and then re-diagnosed as the disease progresses.

 

Please note I have no medical training (apart from an out of date first aid certificate) however, I am a bit surprised that you've received a definite scleroderma diagnosis purely on the results of blood tests. When I was diagnosed I had the positive antibody PM/Scl, but I also had fairly typical scleroderma lung involvement and various other symptoms, which enabled my medical team to make a correct diagnosis. This complex disease does affect everyone differently and so it's quite possible that any symptoms you have may settle down and stablise, just as mine have.

 

We do recommend that our members, if possible, consult a listed scleroderma expert, as such a complicated disease does require specialist knowledge and expertise.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Clearly, any immunosuppressant is going to suppress the activity of the immune system, which to me would explain why the antibody count is lower.  

 

I would therefore expect the numbers to go up again if you stopped taking the immunosuppressant. Plaquenil is not a cure, but it will presumably slow things down.

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Hi Dimarzio,

 

That's an interesting point; although not strictly an immunosuppressant per se, plaquenil does have immunosuppressant properties and is also an anti-malarial drug and is included (with other immunosuppressants) under the category of drugs referred to as DMARDs (Disease-Modifying Anti-Rheumatic Drugs). It's widely used for autoimmune conditions, such as scleroderma, lupus and rheumatoid arthritis and many of our members have been taking it successfully with good results.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Tate,

 

Welcome to Sclero Forums! 

 

There's one aspect of your post missing. That is, scleroderma is never diagnosed based only on blood work.  The diagnosis depends upon the presence of certain symptoms or a constellation of symptoms, which I presume were the reasons you had the blood test run in the first place.

 

With the right symptoms, you can be diagnosed with scleroderma without any positive blood work at all.  By the same token, you cannot be "undiagnosed" with scleroderma just because an antibody returns to normal.  Many people experience changes in their antibodies over time, if their doctors persist in testing for them.  Perhaps its good if antibodies return to normal, or interesting if another antibody suddenly shows up, but the real question is whether your overall health is worsening, staying the same, or getting better. 

 

For me, I wouldn't read too much into antibodies. They can help during the diagnosis stage, but most of them don't directly tie in with the disease or help with managing the progression. It's possible to die of scleroderma while having entirely normal antibodies; and it's possible to live with scleroderma for many decades despite very impressive antibodies.

 

You haven't mentioned your symptoms worsening, so I may presume they are stable. And with your treatment plus a bit of luck too, maybe they will stay that way! 

 

:hug-group:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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