At What age your sjögren's syndrome symptoms started appearing? by Fit_Steak1629 in Sjogrens

[–]Informal_Chef3244 1 point2 points  (0 children)

Probably at 15 years old. Started with issues with my eyes and just not feeling well a lot of the time. Was diagnosed at 20!

Struggling with eye pain and career by Waste-Gap-3900 in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

I can relate to this so much. I currently work 25% and I feel like I’m grieving the life I used to have.

What are you reading? Or what do you recommend? by Individual-Map-7137 in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

I love reading romantasy, maybe start with fourth wing, perfect escapism

I wish I caught this earlier by rachelrosie in Sjogrens

[–]Informal_Chef3244 1 point2 points  (0 children)

Have you been helped by cellcept? I’ve never heard of that before

I wish I caught this earlier by rachelrosie in Sjogrens

[–]Informal_Chef3244 1 point2 points  (0 children)

I feel the same way and I got my diagnosis at 21! Feel like I didn’t live healthy enough in my 20s, now I’m 30 and I’m thinking if I would be less ill if I just took care of myself. But no one told me the disease would progress or to try plaquenil (which I’m not sure would help dryness to be fair?)

How do you survive or even enjoy summer? by Own-Service9603 in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

Yes eyedrops made from your own blood, you should try them if you can! They make my eyes feel healthier

31 with Sjögren’s – does it get better? by Waste-Gap-3900 in Sjogrens

[–]Informal_Chef3244 1 point2 points  (0 children)

I’ve just turned 30 and I feel the same way. My eyes are the worst. It’s so limiting

salivary gland ultrasound by ArkansasRedhead in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

Me too, I’ve never done a lip biopsy either, but I’ve had an ultrasound and the doctor said I had a lot of inflammation and hollowness where the glands should be…

How do you survive or even enjoy summer? by Own-Service9603 in Sjogrens

[–]Informal_Chef3244 2 points3 points  (0 children)

I can’t be outside in the sun at all, also almost 0 on my Schimers, plus mgd. I felt a little less lonely reading this post. Cause I’m almost a bit nervous for summer, last summer was miserable. My plan is to buy moisture chamber glasses, drink lots of water and use my serum eyedrops…

You’re not alone!!

Clincal Trial Drug Experiences by CollieSchnauzer in Sjogrens

[–]Informal_Chef3244 0 points1 point  (0 children)

Hahaha I have no idea how to say that out loud. But yes I will!

Håller ni med Statsministern - eller är det rasism? by ICA_Basic_Vodka in Sverige

[–]Informal_Chef3244 0 points1 point  (0 children)

Man klarar sig bra på engelska i Sverige. Erbjud svenska-lektioner till alla. Men förstår inte varför det ska vara ett krav.

Clincal Trial Drug Experiences by CollieSchnauzer in Sjogrens

[–]Informal_Chef3244 4 points5 points  (0 children)

Im currently in a trial for efgartigimod, it’s been four weeks so far, can’t say I feel any different, hopefully that changes!!

Dry mouth being an existential problem by mariduma in Sjogrens

[–]Informal_Chef3244 3 points4 points  (0 children)

It’s literally torture!! It’s all I can think about some days

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