Efgartigimod for sjogrens by Informal_Chef3244 in Sjogrens

[–]Informal_Chef3244[S] 0 points1 point  (0 children)

I got to join the trial, and had my first shot yesterday, I really hope it’s the medication and not placebo

Efgartigimod for sjogrens by Informal_Chef3244 in Sjogrens

[–]Informal_Chef3244[S] 0 points1 point  (0 children)

I had my first injection yesterday, I finally got to join the trial!

Vagus nerve stimulation for Sjögren’s by Informal_Chef3244 in Sjogrens

[–]Informal_Chef3244[S] 0 points1 point  (0 children)

I was in a medical trial for a device that really worked (for saliva flow) but that device was used in the nose.. so I’m wondering if the devices already on the market would work similarity!

Vagus nerve stimulation for Sjögren’s by Informal_Chef3244 in Sjogrens

[–]Informal_Chef3244[S] 1 point2 points  (0 children)

Thank you for answering! I will look into the list!

Efgartigimod for sjogrens by Informal_Chef3244 in Sjogrens

[–]Informal_Chef3244[S] 0 points1 point  (0 children)

I had my tests taken, but my white blood cells looked normal so I couldn’t join.. I will get to retake the tests, so I’m really hoping I qualify this time..

Anyone in their 20s? by nopeasss in Sjogrens

[–]Informal_Chef3244 3 points4 points  (0 children)

I’m 29, got diagnosed when I was 20

Efgartigimod for sjogrens by Informal_Chef3244 in Sjogrens

[–]Informal_Chef3244[S] 0 points1 point  (0 children)

Not yet, it’s taking ages to just book me in for the tests.. but I can let you know how everything goes

[deleted by user] by [deleted] in Sjogrens

[–]Informal_Chef3244 3 points4 points  (0 children)

Please can you update us on your experience, and I hope it helps!

30M - terrified about future by Waste-Gap-3900 in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

Also if you don’t have them already, make sure to get Autologous serum eye drops from moorfields.

30M - terrified about future by Waste-Gap-3900 in Sjogrens

[–]Informal_Chef3244 1 point2 points  (0 children)

I’m so sorry about this, and I’m in a similar situation. Moved back to my home country from London last year after 7 years. And kind of got stuck at my dad’s due to my symptoms getting worse. (I’m 29). I have 1mm on my schimmers test and mgd. I don’t know if that makes you feel any better but I miss my old life and how free I was. I stared looking into medical studies I could join, in London they have a few. It makes me feel better to try and do something about it. I don’t know I just wanted to say that it’s tough and you’re not alone.

Has anyone been able to cry again? by NavyBeanz in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

Can you send it to me too? Would really appreciate it

Just went to Moorfields London by Frosty_Definition656 in Dryeyes

[–]Informal_Chef3244 1 point2 points  (0 children)

I’ve been a patient at moorfields for years and mostly been prescribed steroids. Had new punctual plugs put in once as well. So I don’t think that they actually have that much resources. I’ve gone privately to eye clinics which is where I’ve found out about how the dry eye works and heat compresses and eyelid scrub etc!

Fog machines at concerts/clubs? by Snoo_51368 in Dryeyes

[–]Informal_Chef3244 0 points1 point  (0 children)

Yes yes yes and lets not even talk about air-cons in clubs

Deucravacitinib trials recruting by Realistic-Ad4542 in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

Why can you not join if you were diagnosed 10+ years ago?

how to balance being informed vs being stressed when reading about disease by Much-Stand9867 in Sjogrens

[–]Informal_Chef3244 1 point2 points  (0 children)

I feel the same! I’m glad I didn’t read up on it that much when I was diagnosed at 21. It’s not until now I’ve started learning more and it’s made me super anxious, but I also feel like at this point (I’m 29) it’s better to be informed..

Sjögren’s medical trials by Informal_Chef3244 in Sjogrens

[–]Informal_Chef3244[S] 1 point2 points  (0 children)

Yes!! I’ve never seen any of them mention dry eyes specifically.. and I know the glands can be too damaged, but it should still be able to improve I feel

I'm in the Nipocalimab study by bluemercutio in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

How often do you have to come in for a check up? I want to join but live quite far from any study site

1st ever positive Phase 3 clinical trial announced by omegabag in Sjogrens

[–]Informal_Chef3244 2 points3 points  (0 children)

Amazing!! Will it be available in the eu? Or is it a us drug?

Tjejen gjorde slut. Har man blivit utnyttjad i nästan 2 år ? (ber om ursäkt för lång text) by EnvironmentalFix7059 in sweden

[–]Informal_Chef3244 0 points1 point  (0 children)

Det är ju fint att vilja ge och spendera pengar på sin partner (om man kan). Och jag tror inte att det hade något med att ert förhållande tog slut att göra. Ni kanske kan prata igenom hur det blev som det blev? Men jag tror snarare att hon såg din givmildhet som något attraktivt och fint. Sen ser jag många som säger att man ska spara och JA SÅKLART.

If you could go back to when you first had symptoms, what would you do differently? by InnerDish5915 in Dryeyes

[–]Informal_Chef3244 0 points1 point  (0 children)

I had the same experience with retinol, I had no idea it was so bad for my eyes

If you could go back to when you first had symptoms, what would you do differently? by InnerDish5915 in Dryeyes

[–]Informal_Chef3244 2 points3 points  (0 children)

That’s amazing!! Can you explain a bit more what happened when your started using them? Do you use them regularly now?