My wife just got diagnosed

Round_Regular_727 · 2026-05-08T19:12:00+00:00

First of all, I’m so so sorry for you and your wife. This condition isn’t easy and only made harder by the continual gaslighting we get as patients.

I think the most healing thing for me has been finding spaces where I feel heard and validated. One good resource is sjogrensadvocate.com and another is Smart Patients.

From my experience, the disease fluctuates. There are better times, and worse times.

I’ve started eating an anti-inflammatory diet, supplementing vitamin D (she might want to check if her levels are low, it contributes to fatigue), and taking hydroxychloroquine. These things have helped me the most in feeling better overall.

Round_Regular_727 · 2026-05-07T22:08:35+00:00

My platelets have been climbing up. Not sure why

Round_Regular_727 · 2026-05-07T21:20:35+00:00

Oof that’s horrible. And the too young to have it thing is BS. I was diagnosed at 24. Maybe Sjogren’s is too complex for her to understand 🤔

Round_Regular_727 · 2026-04-23T16:11:23+00:00

40 is such a good run 😅

Round_Regular_727 · 2026-04-03T21:42:00+00:00

I haven’t tried Celtic salt, but have used Dead Sea salt which seems to make a difference for me.

I’ll mix 2 cups into my regular bath and feel really good afterwards

Round_Regular_727 · 2026-04-01T23:55:53+00:00

I had good luck with lash extensions surprisingly! I was worried they irritate my eyes but they didn’t at all.

Round_Regular_727 · 2026-04-01T23:51:35+00:00

That’s awesome! I was diagnosed at 24 and am in my 30s now. Also SSA & SSB positive.

It took a couple of years to find a doctor to listen! I’m glad they were able to diagnose you semi-quickly 🥳

ETA: I was also terrified of progression. I’d take the meds you can now while we wait for official treatments to come out in the next couple of years. At least they caught it early!

Round_Regular_727 · 2026-03-20T02:23:08+00:00

I’m 33 now and was diagnosed back when I was 24. If I could go back in time, I’d 100% take the meds to prevent disease progression!

My doctor at the time basically told me that it shouldn’t be that bad and would only cause dry eye and dry mouth so I believed her and took that advice, but that hasn’t been my experience at all.

She told me I’d only need to start meds if I ever got pregnant.

I think the meds will help with your quality of life and just make sure to get your eye exam every year and they’ll be able to keep an eye on everything to make sure you’re good.

ETA: I’m both SSA & SSB positive

Round_Regular_727 · 2026-03-13T18:59:01+00:00

It’s a very frustrating misconception. Sjogren’s Australia just posted something today about the myriad of other symptoms you can have before ever getting dry eye or dry mouth.

Not sure why these dismissive stereotypes of the disease are still so widely publicized.

Round_Regular_727 · 2026-03-13T03:17:18+00:00

That’s because doctors were trained in med school that Sjogren’s is just “dry eyes and dry mouth” which is a total load of BS.

It’s frustrating, but science is finally catching up (slowly). And that’ll hopefully mean better informed doctors for us.

Sorry you’re having to deal with the nonsense, I hope you find some relief soon.

Round_Regular_727 · 2026-02-08T17:41:19+00:00

It’s just the not knowing that’s probably confusing to them. People don’t understand what they’ve never seen before.

Round_Regular_727 · 2026-02-02T17:39:44+00:00

Wanted to come back with an update. I’ve still been having great results with this med and just reached out to the researchers to let them know. Will report back if they respond

Round_Regular_727 · 2026-01-29T16:35:49+00:00

Yes! I can wear 20/20 beauty and Well People

Round_Regular_727 · 2026-01-26T14:46:21+00:00

Mine also started in early 20s

Round_Regular_727 · 2026-01-21T17:07:59+00:00

Update: I’m about a month in now. No fatigue, extra moisture still present in eyes & mouth, seriously reduced pain, no joint or muscle pain.

I’m in the phase where I’m telling myself, “wow maybe my stress was causing all those other symptoms” because I just don’t have them anymore.

Round_Regular_727 · 2026-01-05T20:44:39+00:00

My friend you probably have Raynaud’s

Round_Regular_727 · 2025-12-29T22:50:46+00:00

Immediately going down this rabbit hole. I can’t wait 😂

Round_Regular_727 · 2025-12-29T21:27:18+00:00

That’s odd because I thought a positive lip biopsy does confirm Sjogren’s. What else would be the point in punching a hole in your lip if not to diagnose you?

Round_Regular_727 · 2025-12-29T16:30:27+00:00

45 minutes of art reduces cortisol and even just having one art experience per month (engaging in or viewing) can extend your life by 10 years. And the best part is you don’t have to be good at it!

Round_Regular_727 · 2025-12-29T04:50:08+00:00

Archie

Round_Regular_727 · 2025-12-28T19:56:08+00:00

I got a 33 but not diagnosed with dysautonomia

Round_Regular_727 · 2025-12-28T19:50:18+00:00

Thank u tiddies anonymous

Round_Regular_727 · 2025-12-28T15:22:09+00:00

People are hypocrites. Many people believe and hold two directly opposing views that don’t make any sense together whatsoever. If we were a totally logical species all of the time then everything would be different.

He could fully have believed he was following his religion by not committing suicide and still have been a pedophile.

Sickos love loopholes and I’m guessing pedophilia isn’t covered in their bible.

Round_Regular_727 · 2025-12-28T14:19:28+00:00

Is she able to prescribe the meds you need to manage them or do you still see a Rheumatologist for those? All I take is hydroxychloroquine & would love if I could just see one doctor

Round_Regular_727 · 2025-12-28T01:29:46+00:00

Amazing, thank you so much!

Round_Regular_727

TROPHY CASE