u/Waste-Gap-3900

Hasn’t it been approved already? Does anyone know when it’ll be available to patients? I thought it was going to be last month

I’ve spent a lot of time reading about the worst-case scenarios, and I think I could really use some hope today.

I’d love to hear from people who have been living with Sjögren’s for several years and are still doing well.

- Have you been stable for a long time?

- Are you still able to work, travel, enjoy your hobbies, and live a fulfilling life?

- Has hydroxychloroquine, a biologic, or another treatment made a big difference for you?

- Is anyone here on a clinical trial (ianalumab, dazodalibep, CAR-T, or anything else) that’s dramatically improved your symptoms?

- Have your symptoms stayed relatively mild over the years?

I’m not looking to dismiss the challenges of this disease—I know many people struggle—but I think it would really help to hear some positive stories and be reminded that a good quality of life is still possible.

Please share anything hopeful. I think a lot of us could use it. ❤️

Has anyone with Sjögren’s here become a member of DIGNITAS or gone through the assessment process with them?

I’m wondering whether people with Sjögren’s have actually received approval / the “green light,” and what the process was like.

Not looking for judgment — just trying to understand how they view chronic autoimmune illnesses like Sjögren’s in practice.

Hi everyone,

I’ve been talking 400mg of hydroxy for three weeks now and I swear I feel worse?

My body feels very strange and pained when I wake up, which didn’t use to happen. I feel the drug that is meant to help is making things worse? But then symptoms change all the time so I don’t know what to expect.

Is it worth pushing through?

How long has everyone been diagnosed for and what do they do for work? Do you have accommodations in place?

Hi All,

I’m in my mid-30s and was recently diagnosed with an autoimmune condition that’s making it really difficult to keep up with a demanding corporate job.

Up until now, I was very career-driven and working in a high-pressure tech role, but things have changed quite suddenly and I’m finding the pace and stress increasingly unsustainable.

I’m trying to figure out a more sustainable path—something that’s kinder on my health—but still allows me to cover my bills and maintain some stability. It feels like a difficult balance to strike.

Has anyone here been through something similar or made a transition like this? I’d really appreciate any advice, whether that’s career ideas or just how to approach this kind of change.

Before anyone jumps to conclusions, this came completely out of the blue. I’d always been really healthy and had never even heard of this condition before being diagnosed. It’s been a bit of a reality check that disability can affect anyone at any point.

Thanks in advance.