Sjögren’s at 30 – anyone living well with it?

[TheBoldQuail]

Hi all,

I’ve just turned 30 and have recently been diagnosed with Sjögren’s. My eyes are really bad at the moment... they’re constantly dry and I can’t even cry, which feels really unsettling.

I’ve been reading things online and, honestly, some of the stories have really scared me.

I was wondering if there’s anyone here who’s been living with it for a long time and is doing well? I’d really appreciate hearing some more positive experiences.

Thanks so much

My mum has it. She's been diagnosed around 20 years now. She takes medication to slow it down. She does have health issues but has not reached the point of some of the horror stories - liquidised meals, being bed bound etc. Overall, considering she is nearly 80 (which I know puts her in a different category to you) she does well.

I have Sjogrens. I developed it in 2021 and was treated with steroids. I put on four stone but it saved my sight. No reaccurance of any issues. Eye drops that's it.

@Dorothyperky my cousin had the same including the weight gain from steroids but has lost it recently with mounjaro. She uses eye drops, chews a lot of gum and always carries a big water bottle but apart from that you'd never know anything was up besides her having gained and then lost a lot of weight. She has triggers that she avoids, BBQs and woodburners are one. (Our whole family is actually prone to saliva gland stones.)

OP I hope your experience is the same as my cousin - remember that the internet will always give you the most extreme and rare scenarios and then it's hard to not to catastrophise. Hope you're ok as you navigate this