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.
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 :)
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.