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Luwana F

Scleroderma and Sjogrens

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In 2009 I was diagnosed with Sjogrens. Now in 2017 I am diagnosed with Scleroderma.

 

Anyone out there been diagnosed with these?

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Hi Luwana,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with Sjogren's and scleroderma. Thankfully, I don't suffer with Sjogren's (and I'm hoping that pleasure will be indefinitely postponed), although I have been diagnosed with limited scleroderma for the last eight years. I'm still going strong, though!!:wink:

 

We certainly do have other members, who are suffering with both conditions and some of them may be along to support you.

 

We do suggest that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise.

 

Kind regards,


Jo Frowde

ISN Board Member

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 Luwana,

 

Welcome to Sclero Forums!  As it happens, quite a few of us have both Sjogren's and scleroderma. They figure about 20% of people with scleroderma also have Sjogren's.  It's also not unusual to be diagnosed with Sjogren's first, for any number of reasons.

 

One reason might be because Sjogren's, and Hashimoto's (autoimmune thyroid disease), are thought to be "gateway" diseases to autoimmunity. But part of that might be because those diseases are more common and much easier to suspect and diagnose than many of the rarer and more unusual autoimmune diseases, such as scleroderma.  Also, Sjogren's can "go systemic", imitating or overlapping with many symptoms of scleroderma.

 

I don't know your particular situation, but many of us with overlaps tend to get delayed diagnosis, since things get so confusing.

 

: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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You say Sjogren's can go systemic, more than very dry eyes and mouth I guess?

 

Does that mean with pm scl.70 antibody l could still be just Sjogren's ( which seems a lot less scary than diffuse SSc!).

 

I've read of people having antibodies but no symptoms; my journey was the opposite, masses of symptoms for nearly 2 year, antibodies found only in last 3 months. Can the illness start before antibodies show?

 

Sorry, so many questions, I'm just utterly confused how my health issues are so bad . Would love to hear if anyone else is having this rapid change and anyone who's had it slow down.

 

Can it slow down any, as I'm struggling with the speed of this?

 

Thanks.

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Hi Joe2,

 

I can understand how confusing you're finding things at the moment; scleroderma is an extremely complex disease, with many different facets to it, which is why we recommend that you consult a listed scleroderma expert. From reading your posts, I'm not sure whether you've actually been diagnosed by a scleroderma expert; it is a most difficult disease to diagnose correctly, as Sjogren's can be a disease in it's own right, or part of a more complicated autoimmune problem.

 

As regards to your blood tests, it is possible to have all the symptoms you describe and yet still have negative blood tests for a while, or never develop them at all. I'm afraid that scleroderma can progress very rapidly, but it can equally stabilise and settle down, which did happen in my case. However, it affects different people in different ways, so just because it settled down for me, I'm afraid that doesn't mean that it will follow an identical course for anyone else (it's very hard to give a prognosis for the disease, as it does depend which organs are affected.)

 

One thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases.

 

Kind regards

 

 


Jo Frowde

ISN Board Member

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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