Just had my mind blow by AI. Apparently the vagina has no mucus producing glands...! Muscus comes from blood plasma! So why vaginal dryness? Because sjogrens doesn't actually attack glands it attacks epithelial cells.

Also - men's junk is also affected. ED is much higher among men with SD and some studies show 2/3 of men with sjogrens have ED.

Because it's World Sjögren's Day...

TLDR: Do your due diligence as a patient and prepare for your doctor visits. Every morsel of information matters.

I was very much anticipating the date with my new rheumatologist, Dr. Hope (name changed to protect his identity), and was struggling to pack 10 years of signs, symptoms and shenanigans into a piece of paper... what does he need to know? I didn't realize the uphill battle a patient on the dark side of medicine would have... I used to ask all the questions and now I struggle through the brain fog to find words to explain my ordeal. To add to that, I was getting tired of repeating everything to different doctors over and over and over and over again, ad nauseam and beyond! So I decided to create a short anamnesis:

10 Sjögren's Substantials:

Main current complaint (what we call chief complaint in medical lingo)

Medical and surgical history -if you have other diseases, previous operations

Family history - list diseases from your paternal/maternal side of the family

Allergies -really important especially if you have drug allergies

Current medications - include generic name, brand name, dosage, what time you take them and how long you you've been taking them, and any dose adjustments

Timeline of symptoms - most important! Which symptom started when? How frequent? If you have a symptom tracker, please share it with your doc.

Any triggers (if you know them, of course)

What you're doing to manage flares.

Lab, test and imaging results, if available.

Any reports from other doctors in your care team.

The next day, documents in tow, I came prepared with my date with Dr. Hope... it was relief at first sight! He was soooo thorough, empathetic and professional, and was grateful for the short summary that I fastidiously prepared. He asked me what my expectations are. I simply smiled and said, "For you to listen and understand..." He nodded in agreement and smiled back. We both discussed my management plan, and he even suggested 2 clinical trials starting in autumn that I can potentially join. I'm looking forward to it! I'll let you know how it goes...stay tuned!

https://sjogrens.org/get-involved/spread-awareness/world-sjogrens-day#:~:text=It%20is%20marked%20every%20year,Swedish%20ophthalmologist%20who%20discovered%20Sj%C3%B6gren's

History of World Sjögren's Day

World Sjögren's Day was created by the Sjögren's Foundation to raise much needed awareness for Sjögren's. It is marked every year on July 23rd, the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren's. The Foundation is joined by organizations around the world to draw attention to Sjögren's and the disease's impact on millions of patients.

Dr. Henrik Sjögren was a Swedish ophthalmologist who first identified the disease in 1933. Today, his birthday is celebrated as World Sjögren's Day to help raise awareness for this disease.

In 1929 Dr. Sjögren met a patient who complained of dry eye, dry mouth and joint pain. While each of these symptoms were already well known, it was the combination of them that Dr. Sjögren noticed and decided to investigate.

Dr. Sjögren could have been just an ophthalmologist who happened to meet a patient with dry eye, but his open mind led him to the discovery of an unknown clinical entity. His work not only paved the way for current researchers in the field but has also helped all patients living with this complex disease.

Ways You Can Make a Difference

Share the Sjögren's Foundation World Sjögren's Day Fact Sheet

Click here for the World Sjögren's Day Media Kit

Hi everyone, I was recently diagnosed with sjogren’s and I’m looking to take supplements for fatigue, sicca, and hair + skin. I read that fish oil and flaxseed have helped a lot. For those of you who take them, have you noticed any improvement? Which brands do you like? (Still waiting to see back on other deficiencies, although I am vitamin d insufficient).

I have MCTD and secondary Sjogren’s. Mostly this comes out as dry mouth and it’s far worse at night.

I have started using those sticky xylitol mints but when they dissolve, it’s like the dryness is worse than ever!

What helps you all?

Will it improve with medication? I’m currently on no meds after reactions, but about to go on a new one.

Hi there, I was recently diagnosed with Sjogrens at age 52 and I’m about 4 weeks into taking plaquenil. I am suffering with really bad nausea and diarrhoea and feel like quitting. Has anyone else experienced this and it’s gotten better? Just wondering whether I should persevere for a few more weeks.

Hi everyone,

Posting here as not sure where to go. I have hashimotos and have since I was 21 (13 years). I’m 9 months pp with my second baby and still breastfeeding and I have had what I thought was cubital tunnel syndrome in both arms from breastfeeding positions and carrrying baby all day. Some days are better than others. Then a month ago I had a reoccurrence on altered sensation in my outer ankle and top of foot (this happened 5 years ago, neurologist said the nerve was bruised from sitting on it and it went away after a few months).

Gp ordered an ANA test and it came back 1:80 speckled which was a shock to me. GP has ordered ENA test to take in a Month and getting a nerve conduction study done.

Separately I have had an infected chazalion on my eyelid for about three weeks. The optometrist put yellow dye in my eyes and commented how very dry my eyes were which also surprised me as I don’t have any symptoms of that? I never have to use eye drops or feel any gritty or dryness. I’m now concerned it could be sjogrens and the research has terrified me (cancer risk, people saying it’s not just dry eyes it’s systemic and can attack other organs etc)

Does it sound like I have sjogrens? Is this a really scary diagnosis if it ends up that way? Can you live a normal life? Can I have more kids and live a long life?

Hi there! This is my first time ever posting on Reddit so forgive me if I do something wrong lol! Tomorrow I’m getting my lip biopsy done and I have absolutely no clue what to do after! everything I’ve seen just says the basic “all soft foods” and “take lots of Tylenol or ibuprofen“. the only tip I’ve seen is someone mentioning to use the numbing gel on the sides of the incision to help numb it a bit better. I’m sure my doctor will go over some other stuff with me but I am very aware that some people will probably have their own tips for the best recovery! I’ve also been super anxious about all of it so I’d love to hear about anyone’s experience so I know it won’t be too bad. Thank you!!

I would love to hear your success stories. I’m about a week on the diet but, have “cheated” on accident because I can’t remember all the rules. I ate pretty clean before but, I am trying to follow this diet to a T. I am noticing less inflammation in my joints and a little more energy. Dry eyes and mouth are there still… I can’t tell if there’s improvement.

I (20M) been having symptoms last 2 weeks such as severe dry mouth thats not as bad now as the flare but now fluctuates,blurry vision, severely dry skin, burning joint pain mainly in my knees and wrists, fatigue despite sleeping 8+ hours, cold feet and brain fog and body aches. I wanted to know if anyone with the same symptoms had the same or similar results.

For all of you who have tried and failed hydroxychloroquine - what happened?

I think I might be failing it. I started it in November and ever since February, I’ve had increasing dizziness. I don’t have POTS or other autonomic dysfunction that I know of, and all blood work comes back clean (minus autoimmune bloodwork). I’ve had a brain MRI, been to the ENT, eye doc, even had prism glasses. I’ve taken supplements out of the rotation thinking that would be causing it, but nothing has helped.

Wondering if anyone else has had to stop due to dizziness and if so, can you describe your dizziness?

In February I started methotrexate, to hopefully decrease the inflammation in my joints, but shortly after starting I began to have increasing salivary gland pain. Both my parotid and sublingual glands started aching, which they hadn't done before. Eventually things started to improve (very slowly), but just this week I had a dose increase and the salivary pain is back! At first I thought it was a coincidence that the pain began when I started MTX, but could it be causing it somehow? Anyone experience anything similar?

Hi, if anybody is in the San Antonio or Austin area and you have a good rheumatologist in regards to Sjogren’s, would you let me know? You can DM me if preferred.

My current rheumatologist isn’t that great. Sort of like yeah you have Sjogren’s, what’s the big deal? Would like someone who is more proactive and seems to care.

Anyway, I hope this is OK mods. If not, I understand if you have to remove.

Thanks in advance

I have Mctd (mixed collagenosis) and a huge part of my symptoms are dry eyes, even tho sjögrens is zero-negativ like 30-40% of the sjögrens patients.

A huge trigger of my eye-dryness are screens and i can only use them with brightness at max.5% (try to adjust it on your laptop for one second and tell me how much you can see) also my yellow-setting is at 60% to shut as much bluelight out as possible. This helps a lot and is the only way i can use screens, even though i can hardly see anything. And still my eyes are burning.

How is it for you with screens? Any problems or normal?
if you have problems with screens could eyedrops really help you? Which?

I started long haul COVID after being infected with Omicron. It took me over a year to get back to 80 percent. Then, I got reinfected in spring of 2024. Things went down hill. I had brain fog, extreme fatigue, frequent migraines and many other symptoms and couldn’t live a normal life. I gradually got better with various therapies over time but still have visions issues including eye strain/pain and dry eyes, orthostatic hypotension, dry/painful mouth, heat intolerance, occasional joint pain etc. My autoimmune blood test back in 2023 was negative. However, I feel many of my symptoms are very similar to those who have Sjogren. Just wondering if anyone here started to experience these symptoms after COVID infection and then diagnosed with Sjogren? Or Sjogren symptoms worsened after COVID infection? I know someone with Lupus who got significantly worse after COVID.

Getting into new ophthalmologist specialist today, but traumatized because dilation inflames my eyes, (one eye got blurry from it last time for months) and I'm worried they will demand that, on a first visit.

Do dilating drops flare you up and if so, how to approach this matter "you will not be dilating my eyes today" with a new doctor. Eyes have been inflamed for 4 weeks. Also, Im worried he will do an "Ocular biopsy" can I avoid that? Thanks!

I’m curious if anyone else who takes Ubrelvy to treat migraines has had a similar experience. I’ve had at least five instances now where I’ve experienced pain relief from Ubrelvy during an intense flare. Yesterday I started getting a full body flare with widespread pain that was burning/aching, and by evening I was completely debilitated. My whole body just hurt, but I didn’t have typical unilateral migraine pain. I think it was brought on by weather changes overnight. Other times when I’ve experienced this type of pain it’s from having too much sun exposure or too much activity. Before I went to bed last night I took Ubrelvy, and now waking up I have complete relief from the pain.

I did some searching about the mechanism of action of Ubrelvy and how it might explain the pain relief from a Sjogren’s flare. Looks like it could be related to CGRP, calcitonin gene-related peptide, which transmits pain signals.

I thought I’d share and see if anyone else had a similar experience? I plan to bring this up to my rheumatologist at my next appointment to see if I might need a referral to neurology since I haven’t been formally diagnosed with small fiber neuropathy or dysautonomia but I suspect I have both.

Background: SSA/SSB positive, diagnosed in 2025, on hydroxychloroquine for almost 1.5 years.

I'd like to learn more about clinical trials for new medications that are currently being studied. I'd also love to hear from anyone who has participated in a clinical trial—the pros, the cons, whether you'd recommend it, and who I should contact if I'm interested in enrolling.

I'm a 33-year-old woman with more than one autoimmune disease.

Thank you!

After years I (30F) tried waxing my legs at home, but now (next day) I have the impression it also ripped a thin layer of skin 🫪 some parts of the leg are more red, a bit lighter than the rest of the skin.

I'm absolutely not a waxing expert, anyone here had the same experience? Do you think that's really what happened?

I now have mild neurotrophic keratitis after what I imagine were years of dry eyes without realizing it.

Did any of you experience being told your eyes were moderately or severely dry without having felt it prior?

Did you start to feel it when starting treatment?

Anybody feel a flare coming on, presumably from the air quality? I’m suddenly aware of how good I felt a couple weeks ago compared to now. Joints hurt, hands swollen, mouth and eyes extra dry.

Hello, I'm relatively new to Sjogrens

I've started showing symptoms at the beginning of this year, and I've been recently diagnosed just a week ago

What can I expect from this?

I'm 24f

Does every flare make everything worse?

Does the meds really help?

My eyes already sting everyday, and I even have pain on my chest and throat due to dryness

I just want to know

Hey everyone!

I figured I'd share what happened with my salivary gland. Last Sept (2025), my neck swelled up like I had a golfball on the side of my neck. Excruciating pain, trouble speaking, trouble swallowing. Went to ER, they told me salivary gland and laughed. I ended up going through the gauntlet of doctors until I found an ENT that specialized in salivary glands here in LA.

Fast foward to Feb 2026, I had a saliendoscopy with a stent placed in my mouth. Under my tongue had become so discolored and tall that I accidentally bit it a few times just chewing gum. Following surgery, zero stones were found! On top of that, the portion under my tongue was pure fibrosis. They had to cut that entire visible part out to even find normal ducting again. I had never heard of Sjogren's at this time and assumed I would be fine.

My surgery site ended up getting infected and towards the end of my antibiotics, I started developing visual phenomena that I was told was visual snow. It was driving me insane. My body also entered fight or flight mode and would NOT chill. We had to stop all SSRIs that I was on for years just to get my body to chill out - out of nowhere. Even my ADHD meds.

Fast forward to April 18, I went to the hospital with suspected stroke. All labs and imaging came back normal, but I had all symptoms of stroke. I've had persistent headaches, visual issues, dizziness, disorientation, tinnitus, you name it since then. Worst of all, my left salivary gland started acting up AGAIN. While it doesn't swell as large this time, I get pain that radiates up into my tongue, floor of my mouth, cheek, and in my neck. I went back to ENT and we were potentially fully going to remove it, but after doing a soft tissue CT, they said they were not able to continue care as the imaging came back normal other than swollen/inflamed/aggravated lymphnodes right next to the salivary gland. They also noted the salivary gland to be swollen, but normal looking tissue. I was at a loss.\

While I'm going down the rabbit hole with Neurology, my PCP asked me to go see Rheumatology. After telling the Rheumatologist everything, she ordered a billion tests (ok not that many, but 14 vials worth of blood work), urinalysis, requested all records from other offices, scheduled me with head & neck surgery, is going to have me do an ultrasound in 2 weeks, perform all physical Sjogren's tests, and most likely wants a biopsy. Most of my bloodwork is coming back clean, but as I have horrific issues with dryness in my sinuses, skin, and my eyes will randomly burn horrifically out of nowhere - as you guessed, we talked a lot about Sjogren's! I'm not sure what to come of it, but I see a lot of folks posting normal salivary glands across reddit or stones and I wanted to share what it looked like when mine messed up without stones haha. You definitely do not want a horn under your tongue. I hope all of you struggling find your answer and get some relief! I hate to think that anyone else has had to suffer like this and I just want my life back, which I also want for all of you. Fingers crossed and curious to see if anyone has had a similar story! I can also share a medication breakdown and testing breakdown.

ALSO, I know it's bad facial hair. Hahaha I wanted to experiment with what it looked like if I grew it out and my wife almost killed me hahaha. Sorry in advance.