Similar question to twilite's post

[MarieB]

Hello, I have been wondering for some time if I have Lupus.  I'm grateful for the information I read in the previous member's post. 
But my question is 'how often should I get tested'.  I've only had the original test where I showed positive for Sjogrens.  I also had some markers for Lupus.  And I've tested positive for RA for decades. 
But when I ended up at the rheumatologist, he said it was mainly Sjogrens or primary Sjogrens (I think that's the phrase). 
Any feedback appreciated. 
Best wishes to everyone even though I know it's difficult. 
Marie

[Linda196]

Thank you for including your labs, it helps to know that has already been tested. You did mention that you've been positive for RA for decades. What was that based on, RF or anti-CCP? the RF is a bit more general than Anti-CCP, and if the second was a positive, it would probably make the difference between Primary or Secondary Sjogren's. Primary just means the Sjogren's is the only diagnosed autoimmune disease.

The Antichromatin Antibodies and Anti-DNA(SS)IgG are both markers for Lupus, but also Sjogren's and a few other things, Anti-DNA(DS)IgG (double strand) would be more specific for Lupus

Since I also have markers for several conditions that I haven't been diagnosed for, because so many of the antibodies are common at varying levels to several conditions, I'm routinely tested once a year, but whenever I've developed new or worsening symptoms, especially some that lean more toward an undiagnosed condition, they are repeated.

[MarieB]

Thank you so much.  I think I'll ask for tests if my new rheumatologist doesn't mention it.  I'll see him on Tuesday.  (My first one retired.)   I am seeing the butterfly rash on my cheeks almost daily now if I go outside.  It' not too bad but I see it and would like to know. I'll post up after my visit. 

Thank you again.  Take care.
Marie 

[MarieB]

Tuesday was my first visit with my new rheumatologist.  Bottom line, he does not think I need re-testing.  He doesn't see Lupus or RA and only some Sjogrens with me.  He did order some labs (seems like for general health) and they did a bone scan.  He doesn't like the idea of me taking 10mg prednisone daily so I'll try something that I will give myself with an injection.  Will also begin shots for my bones. 

I'm confused right now but hoping it will all make sense eventually. 

Thank you for your time and information. 

Best, Marie