new rheumy--lab questions

[volleymom]

Hi all,
I am not new to Sjogren's (diagnosed in 2003 or '04, can't remember at the moment).  At the time of diagnosis, the rheumy I saw was testing for lupus.  Upon being told I didn't have lupus but Sjogren's, I said "great!' and left.  I had no symptoms, and wasn't smart enough to realize what Sjogren's might mean for the future--was just relieved I didn't have lupus.

Less than a year later, I began to have crispy eyes, dry mouth so bad I could hardly speak or swallow food, etc.  I still never expected that I needed to go back to that rheumy, whom I didn't really like anyway.

So not knowing better, I never went back.  Figured there was no reason.  After several bouts of parotid gland swellings/infections since this past Christmas, my primary care doc said time to go back to a rheumy. 

New rheumy basically started from scratch.  I have received my lab results and have some questions.  Here are some of the standout results:

Rheumatoid Factor (normal <11) mine 1242 
     anyone had levels so high?  does a super high level mean worse symptoms or outlook?

Sed Rate (normal 1-15) mine 74
     I'm not really sure what this lab is all about?

SSA (normal 0-0.9) mine >8
SSB (normal 0-0.9) mine >8

ANA titer 1:640  speckled

Oh yeah.  New doc started me on pilocarpine and plaquenil 4 weeks ago.  I can tell that the pilocarpine is making a huge difference.  Not really sure what the Plaquenil is going to do for me.

[Scottietottie]

Hi Volleymom 

Plaquenil is prescribed to slow down SjS progression. It can also make you feel quite a lot better but it takes anything up to six months to work! It got my bloodwork reading normal again. My eyes feel better than they did and I have more energy. I didn't think it was helping aches and pains until I was told to stop taking it while taking erythromycin. Aches and pains I didn't even know I had started creeping up on me. Back on the Plaquenil now, they've backed off again.

Take care - Scottie 

[volleymom]

Thanks Scottie!

I wonder why first rheumy didn't even discuss any treatment at all with me.  Just the rather short-sighted "you may have dry eyes and dry mouth, not much we can do".  So when the symptoms did appear, I figured there was nothing to do but water and eye drops.

I am using restasis too--started just recently after a corneal abrasion.  OUCH!  Really, anything at all that helps my eyes would be a relief.  Glad to hear the Plaquenil may help some too.

I (and my doctors) am often amazed at how far "off" my labs can get.  My docs seem to enjoy dissecting my lab results.  We are walking medical quizzes, I think.