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 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.

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?

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?

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?

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.

I started experiencing symptoms when I was 18, and I’ve had a hard, movable lump in my submandibular gland ever since. I suspect it might be making my dry mouth worse, my dry mouth is constant and has really messed up my teeth, but my doctor doesn’t think it needs to be removed. Has anyone else had this and had it removed? If so, has it helped with your dry mouth? I don’t understand why they don’t want to remove it.

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?

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.

If anyone has any suggestions for dealing with severely dry, flaking and scaly/rough skin, redness, and acne on the face, I would be so grateful. Since being diagnosed it seems like I’ve progressively aged 10 years due to the skin dryness/cracking. Currently using skinfix triple lipid peptide cream, which helps a little, but not enough. I’m scared to put new things on my skin for fear of an allergic reaction; if anyone with a similar experience could share what works for them or their holy grail ingredients/products, that would be amazing.

Just wanted to vent off some steam with some issues I've been struggling with lately. Some of this may seem out of order or rambles a bit so sorry in advance.

Starting off with that some of this relates to Sjogren's and some of it doesn't.

TLDR(To Long Didn't Read)- Got a herniated disc between in c6/c7 because of a drug reaction or multiple drug interactions. Seeing pain management soon and finding new doctors.

So I had a spine MRI done last Monday and got the results. Doctor who ordered it is out of town for the next two weeks.... but I had another doctor look at the reading along with googling it myself. I have a herniated disc between C6/C7 that also may be compressing the nerve.

In the beginning of June, I had a severe neurological reaction to either one medication that I had been on for a bit or it was a severe interaction between several medications that I was on.
I've asked multiple doctors and no one really has an idea at this point and I guess it really doesn't change treatment any. The neurological symptoms were severe stiffness in neck and a few other joints, migraine, numbness/tinging in hands and feet, muscle spasms in legs, light headedness, vision issues and tongue felt like it was being electrocuted. These symptoms continued for 3 more days afterwards. My body decided to have an autoimmune flare up as well and started to have severe eye dryness, and more joint pain. Also developed a palm sized rash on my chest that has yet to leave.

The med or meds that reacted/interacted are Caplyta and Nardil. Both of these are heavy duty anti-depressants. It could've been either EPS or Serotonin Syndrome with these or somewhere in between. Both of these can effect the muscles in the neck causing the herniated disc. I struggle with fairly severe depression and I've tried around 12 medications along with several treatment modalities for it at this point over several years. I see a therapist as well as I've participated in some clinical research trials for depression. I'm somewhat stable currently and know what to do if it ever worsens but have discussed some ideas on a few more treatment options.

I was taken off the Caplyta completely and the Nardil dosage was reduced as well and that seemed to have stopped the main symptoms from happening.

The symptoms that I've been experiencing since this medication issue is chronic pain in neck/head, vision still seems to be a bit off in some ways, weakness in left arm, and random tingling in hands/feet since the initial symptoms. I've had double vision for 4 years but the double vision seems to be worse sometimes now. I've been having these issues on and off since June so it has been somewhat tough to deal with.

Doctors struggled to treat me since they were afraid to add any medications to the melting pot of my body along with the fact that the Nardil interacts with a large number of meds in some way. My PCP thankfully scheduled an MRI and EMG after hearing about my chronic pain and muscle weakness.

I'll be seeing a pain management doctor soon and starting PT soon as well. I also have an EMG in August so hopefully it'll show something. Also looking for a new neurologist and rheumatologist. The neurologist can't seem to make a decision and then gets mad when I ask to get transferred from him to another doctor. The rheum annoyed me when I explained some skin issues that I was having and told me that she wasn't a dermatologist and having seronegative Sjogrens means it isn't related to Sjogrens... I haven't responded to that message yet since I'm now sure how I want to respond to it.

Thanks for letting me vent.

So I’ve shared my story before, SSB/SSA negative, 1:160 ANA speckled, my lip biopsy was positive with a focus score of one and I saw a rheumatologist and they refused to give me a diagnosis without seeing optho. Well I saw optho, they gave me restasis anyway even though he said I didn’t meet Sjogren’s criteria for eyes. They ran a bunch of tests.

I’m seeing the rheumatologist again on Friday and now I’m paranoid since I’m not “Sjogren’s criteria” even with a positive lip biopsy that they’ll take me off of Plaquinel. It’s literally the only medication I’m taking that has significantly changed my QOL. If it isn’t Sjogren’s then wtf is it? Why are they treating it like Sjogren’s if it isn’t significant? I’m so tired of fighting for care. Not to mention I have most of the co-occurring conditions like MCAS/EDS/POTS/ENDOMETRIOSIS/occipital and trigeminal neuralgia/gastroparesis/etc. I have full body issues that are very autoimmune in nature so wtf is with these doctors? My dysautonomia doctor/pcp and others are all convinced I have it.

Prior to starting Restasis my eye dryness was so painful it would routinely wake me up. During those episodes it felt like someone was ripping my eyeball out of my eye socket, and I would be screaming in pain. Restasis (along with frequent daytime drops and heat mask therapy) helped control the problem. I had not had one of these episodes in months, although I had experienced some recent instances of more moderate nighttime dry eye pain.

Last night it came back with a vengeance. It could be related to the fact I had eye surgery for something unrelated a few months ago. Gel drops did nothing to help; I finally brought it under control with eye ointment. I am trying to stay awake at work, while working through the pain (and lingering blurriness from the ointment).

Does anyone else experience eye pain that is this severe?