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SjoDry

Is it possible to have Scleroderma & be seronegative?

5 posts in this topic

Hi.

 

Just wondering if it is possible to have Scleroderma and be seronegative? I know that I have Sjogren's and have been told I may have other overlapping condition(s). I am in Pittsburgh where Dr. Metzger is located. Are any of you seeing him?

 

Thanks much.

SjoDry

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Hi SjoDry,

 

Welcome to these forums!

 

Although diagnosed with Scleroderma, the blood tests I had showed a negative reading for Rheumatoid Arthritis, although I have the Anti-PM/Scl antibody. Thankfully, I don't suffer with Sjogren's.  Please note that apart from an out of date first aid certificate, I have no medical training, but I understand that it's possible to have negative blood tests and yet still go on to develop the full blown disease and vice versa, so the blood tests are only a small part of the whole diagnostic picture.

 

I've included a link to our medical pages on Symptoms and Complications of Sjogren's Syndrome and there is an article regarding a comparison study of seropositive and seronegative Sjogren's  which I hope will interest you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi SjoDry,

 

Welcome to Sclero Forums!  I'm sorry you have Sjogren's and concerns about other possible illness as well. 

 

Please keep in mind that I have no medical training at all, although I am studying for my Internet Medical Degree because I was told that my IMD plus five dollars will get me an extra fancy cup of java at my favorite coffee shop.

 

As I understand it, Sjogren's occurs by itself about half the time (Primary Sjogren's) and secondary to another connective tissue disease, like rheumatoid arthritis or lupus or scleroderma, about half the time (Secondary Sjogren's).  So there is about a 50/50 chance that something else is also going on.  However, that is pretty tricky to figure out because Sjogren's is a systemic disease, meaning it can also affect any/every part of the body, like the other CTDs. See Sjogren's Symptoms.

 

In fact, it can overlap with nearly all the symptoms of scleroderma, even including Raynaud's, difficulty swallowing, and heartburn. This makes it very difficult to sort out "additional" disease, and that is also why it is a great idea to consult a scleroderma expert if there is a question of scleroderma occurring along with Sjogren's; about 20% of people with systemic sclerorderma also have Sjogren's.

 

Yes, it is possible to have scleroderma and to be sero-negative for it, but there are specific symptoms required for a scleroderma diagnosis, so things like tight skin and pulmonary fibrosis would go a long ways toward the cause, but other typical symptoms of scleroderma (such as Raynaud's, difficulty swallowing, heartburn) would be discounted or ignored entirely due to the Sjogren's.

 

And until you see an expert for evaluation, also keep an open mind that the additional illness might be a seldom-seen complication of Sjogren's, or any other connective tissue or autoimmune disease. Most of us find that it is stressful to wonder about possible forthcoming diagnosis, so we recommend getting all the support you can muster, plus putting an emphasis on relaxation and stress reduction -- more hobbies, more fun, more rest too -- during this phase.

 

:emoticons-group-hug:


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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Hi,

You sound just like me. I have symptoms of both, Sjogren's and sclero, but no antibodies for either showing up yet. At times I think it is too much, and waiting for a diagnosis was driving me nuts. I finally have a rheumatologist that says, while there is something going on, there isn't a name other than UCTD (undifferentiated).

 

So, I've been doing as Shelley advised and got busy with hobbies and interests, resting (not as much as I should), and finding good groups of people to share interests with. I've tried putting my illness/disease in the back of my mind. Now that I have some more issues to deal with, it is back in front, but I hope I can get back to "regular" as much as possible. If you are dealing with the symptoms, and someone is watching to make sure things don't get worse all of a sudden, try not to dwell on a diagnosis too much. It will make you feel frustrated.

Lori

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Hello Sjodry

 

Welcome to the forums!

 

I am going to echo Jo's comment that blood work is not always that important or reliable in the diagnostic process simply because its findings can be misleading. For example a person, namely me, can have systemic scleroderma and localised scleroderma but have negative results showing up in blood tests. If you relied solely on the results of my blood tests I would have a diagnosis of perfectly healthy and needless to say I am not.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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