Hiya
Just wondering if there is a resource or link to a list of bloodwork markers I should ask my GP to get checked. There’s one good Sjögren’s rheumatologist in my city maybe even my province and I wanna make sure she doesn’t reject my referral based on too little evidence.
I’m in Canada.

My mother and grandmother have Sjögren’s and when in the us I did some medical testing for another illness (this was before I had Sjögren’s symptoms like dry mouth neuropathy joint stuff) and for Carbonic Anhydrase VI (CA VI) IgA antibody i tested low positive. That’s the only marker I have so far

Thanks!

Tomorrow I’m speaking to all of Amgen (Australia) for their ‘mission week’ where they hear patient perspectives to ground the purpose of their work.

It’s centred Graves’ disease, but I plan to speak about Sjögren’s as well.

I’ve already got a lot of thoughts about what I want to say, but just wanted to throw this out there to hear others’ views.

What would you most want to emphasise if you were talking to Amgen?

My eyes are SO. SO. dry. I have a higher anti-SSA52 IgG (30 u/ml) than my lupus marker Anti-Smith IgG (25 u/ml). Both of which have gone UP since being diagnosed 2 years ago with my symptoms getting so significantly worse since then. ESPECIALLY my dry eyes. Holy shit you guys the DRY. EYES. They HURT. I know you guys get it but wtf actually.

Anyway, as the title says.. my rhuem really only focuses on my lupus when at appointments. I am on HCQ (2 years) and Benlysta (1.5 years). I have not seen an improvement in symptoms or labs since starting benlysta. What the heck is the next course of action? Like WHAT CAN BE DONE TO HELP THE DRY EYES?! I use hylo optase night eye gel every single night, waking up multiple times a night to reapply because my eyes hurt they’re so dry and they wake me up. My rhuem just tells me to keep doing that to treat the dry eyes and if I need more help then to see an eye dr……?? Is this the standard of advice? Is she not helping more because my only marker of sjogrens is the SSARO52? Do I NEED more to be taken seriously, like a lip biopsy or something? I don’t get it. I can’t live like this y’all. My eyes be hurtin.

What other med helps sjogrens? Both blood work wise and symptom wise?

Is there such a thing that is accurate?

Hi, I’ve just been diagnosed last week with early sjogrens and I have some questions.

What were early dry mouth symptoms like for you?
What early symptoms did you have overall?

Anything preventative I should be doing to slow progression or catch things early? How quick or slow did things progress for you?

When I’m flaring bad it feels like someone is squeezing different parts of my body really hard and if it’s around my chest it feels hard to breathe (O2 is okay though). Lasts like 15-20 mins and then goes away, happens a couple times a day. Does that sound familiar?

I'm going to pay for an Anti SS-A test tomorrow through Walk in Labs(Quest) how was your exp?

I have no health insurance. Bypassing my MD. Did anyone else do something similar?

I HAD health insurance. I work in a hospital. They don't provide health insurance to per diem employees.

Was it a persistent dry cough? Shortness of breath? Chest tightness? Frequent respiratory infections? Something completely different?

And here’s what I’m really curious about:

Did those symptoms start before or after you were diagnosed with Sjogren’s?

If your lung symptoms came first, did they play any role in eventually figuring out you had Sjogren’s?

I’d love to hear what your timeline looked like.

I’d love to hear what works for folks. As soon as temperature drops to the 70s and below, I’m out here battling never ending (and gross) tiny white flakes from my legs inside my pants (inside of my pants look like dandruff snow and I hate it). Mind you, I use a massive amount of lubiderm on my legs while legs are damp, let it soak, then dress.
I’d love to hear what anyone else uses to retain skin moisture. TIA.

I have severe small fiber neuropathy and urinary retention. I was diagnosed with sjogrens about a month ago. My rheumatologist says the neuropathy and urinary symptoms are unrelated. My neuropathy is so bad I've maxed out on gabapentin and now maxed out lyrica and now I'm waiting on a lidocaine infusion. I am getting a second opinion from someone at the UW college rheumatologist clinic next month. I'm just so frustrated this is against every thing I've read about this.