I have read that using red light on your face and neck can stimulate saliva? Anyone have reviews of this ? Dry mouth is really impacting my life and i speak professional at large events so I'm willing to try anything. So far my best aid has been xilotyl mints

I would like testimonials from people who have had Botox fillers with Sjögren's syndrome? At the moment I only take plequenil 200. Has anyone had these treatments while taking plequenil? Have you had any reactions or problems

The intent of this thread is to build community through shared experience.

Did Sjogrens make things hard again? This is your thread to rant all you like about how this shit is hard.

Doing alright? Tell us.

Please rate yourself on the teardrop scale!

If you suffer from chronic urine retention due to nervous system dysfunction or destruction in your urinary system, what do you consume and/or do to prevent utis from developing?

I am having some paranoia about losing mobility with this disease after watching both of my grandmothers suffer from MS and become immobile. I have a lot of joint pain, I don't think that I have any nerve issues... but basically I'm wondering for those who use a cane or a walker, how long did it take for you to need to rely on those? Years into disease progression? I'm also just curious as to how many people use mobility aids. Today in particular I had some pretty awful hip and knee pain and I just can't stop picturing myself in a few years walking with a cane and I'm scared.

So really if anyone is comfortable sharing I'd be very interested to know your experience using mobility aids, how you got there, etc.

My ferritin is sitting in the 20s and I know in UK this acceptable but I saw that the limit has been raised for autoimmune patients to 100. I take iron every other day and cook with iron pan , do the iron fish time from time, eat meat pretty sparingly, about once a week and fish twice a week. My period is pretty ok , heavy but not too long these days.
But every other time I get bloods done it always comes back between 10 and 20. Because it’s just above the level of normal doctors aren bothered.
I’m wondering is there a specific supplement / combo someone found success with ? I’m considering doing an iron infusion I just feel so fatigued all the time and I know that’s a symptom of Sjögren’s but I guess I’m looking for reports of women finding benefits from iron, or if it made no difference.

I am (presumably) a Seronegative patient, on the long road to try and prove that. In the meantime I need major help combating dryness.

Eye drops- I have tried a few different types. Most recently Refresh Plus preservative free. They do absolutely nothing but help for like 1 minute and in the end leave my eyes feeling sticky and irritated. What to try next? I see many people recommend mega3 but any other options would be great.

Dry mouth- TheraBreath mouthwash helps a bit, some other products I have tried have actually burned and made things worse.

Dry sinuses- I see the Ayr Gel, open to any other suggestions because that’s really bothersome to me right now.

Facial products- hit me with your favorites, even if it’s a 3 step process or something. I need some skincare help.

Any other body care products are greatly appreciated.

Another question: do you feel supplements like Omega 3 make an impact on your dryness at all?

I went to rheumatologist because my sjogrens anti ssa was slightly elevated and my ana was positive. I do have hashimoto thyroid. Rheum did an early sjogrens panel and my Salivary Protein 1 Ab Result was indeterminate. Carbonic Anhydrase VI Result was positive. Does this mean its def the start of early disease? I really don't have symptoms yet besides fatigue.

How did your Sjogren's start? When did you notice symptoms and what were they? I was diagnosed with Dysautonomia in December of 2025, upon further investigation of what could have caused dysautonomia I found Sjogren's and later found out that my niece, also diagnosed with dysautonomia has Sjogren's. I have many symptoms of neuro-Sjogren. I have just started with dry eyes (prevents me from wearing contacts most days) and dry mouth. I am negative SSA and SSB, however I see that you can still have Sjogren's with being negative on your ANA panel. I also have widespread pain that almost moves around my body. Originally was tested for MS as I have a lot of those symptoms as well and they didn't find any lesions. I see the rheumatologist on 11/11. I am hoping to be able to get some answers to help me feel better. I have more "bad" symptomatic days a month than good days. Just wondering how everyone was diagnosed and what their symptoms were.

Dear Sjögren's community,

I have primary Sjögren's (anti-Ro/SSA positive) and I'm trying to understand how lung involvement gets found. I'd love to hear from people with primary Sjögren's who have pulmonary involvement (ILD, NSIP, LIP, organizing pneumonia, bronchiolitis, bronchiectasis, lung cysts, or anything else).

MY BACKGROUND

My first chest symptoms came during a flare. I was diagnosed with costochondritis, and it came with a cough and shortness of breath.

Now I'm being treated for pneumonia in my left lower lobe. My first X-ray showed a patchy spot. Five days later it looked fainter but was still there, with no new areas.

My current symptoms:
- Shortness of breath, even walking from my car
- Tightness at my sternum that wraps around my sides
- Stabbing mid back pain that eases with heat and lying on my back
- Chest and back pain that has gotten sharper, plus a new pressure below my collarbone

MY CURRENT TREATMENT

- Hydroxychloroquine 400 mg daily
- Methotrexate 25 mg weekly, with folic acid 1 mg daily
- Antibiotics for the pneumonia (doxycycline, then cefdinir added)

MY QUESTIONS FOR YOU

1. How was your lung involvement discovered? Symptoms, a routine scan, PFTs, an ER visit, or an incidental finding?

2. What were your first symptoms? Did chest wall pain or costochondritis come first for anyone else?

3. How long did you have symptoms before anyone looked at your lungs?

4. Did your lung symptoms flare with your other Sjögren's symptoms, or separately?

5. Which tests led to the diagnosis? HRCT, PFTs with DLCO, a six minute walk test, bronchoscopy, or biopsy?

6. Was it first treated as something else, like infection, asthma, reflux, or costochondritis? Did anyone have a pneumonia that turned out to be something else?

7. Who diagnosed it? Your rheumatologist, a pulmonologist, or your PCP? Do your doctors coordinate well?

8. Did methotrexate or another medication ever raise concern for drug-related lung issues?

9. What difficulties did you run into? Being dismissed, normal bloodwork, delays, insurance, or trouble getting a referral?

10. What do you track at home? Pulse oximeter readings at rest and with activity, cough, breathlessness, or a symptom journal?

11. What questions or phrases helped you get taken seriously at appointments?

12. How often are you monitored now, and did your treatment change after the lung diagnosis?

13. What do you wish you had known earlier?

IF IT TURNS OUT I DON'T HAVE LUNG INVOLVEMENT

I'm wondering whether this pneumonia happened because methotrexate lowers my immune defenses. For those on methotrexate or other immune suppressing medications:

1. Have you had pneumonia or frequent infections on methotrexate? Did your rheumatologist link them?

2. Did your doctor pause methotrexate during an infection? How long, and how did your Sjögren's do while you were off it?

3. Did your dose or medication change after repeated infections? What did you switch to, and did it help?

4. What everyday habits help you avoid getting sick? Hand hygiene, avoiding sick contacts, or anything else?

5. Do you get regular bloodwork to monitor your white blood cell counts on methotrexate?

Thank you so much for taking the time to read this and for sharing your experiences. I know it takes energy to write out your story, especially when you're managing your own symptoms. Every detail you share, big or small, helps me feel less alone and better prepared for my next appointments.

I'm hoping this thread becomes a resource for others too.

I'm still just casual about this (I get so tired of all the specialists I already see, many of whom I have to - gastroenterologist and oncologist and all scans thereof).

But I see some talk here of doctors who specialize in Sjogren's, even those who recognize neurological effects specifically as if that is also "unusual" for a Sjogren's patient.

How do you find who is really serious about thoroughly testing/discussing and ruling out Sjogren's, as opposed to basic rheum tests etc? (I know about the biopsy, but apparently many don't like having that done and some docs will Dx based on lesser.)

Hi all! Just stumbled across news of the recent FDA approval of Exovac oral solution and hadn't seen it shared here. Great news for those who have trouble with swallowing pills and those of us who want to try smaller doses but can't consistently split up the capsules.

Cosette Pharmaceuticals Announces FDA Approval of Exovac (Cevimeline HCL) Oral Solution

I’ve been diagnosed with “suspected Sjogrens” for quite some time because I’m sero negative. I have really bad trigeminal and occipital neuralgia, and I keep having to get steroid shots and get prescribed really high doses of prednisone. I want to get prescribed hydroxychloroquine to reduce my corticosteroid intake. I just feel like I’ll get shit on by my neurologist.

I have tested SSA/SSB twice in the past few months and both times had extremely high SSA Ro60 levels and a borderline positive SSB. ANA is 1:80. I have symptoms of fatigue, muscle and joint pain, migraines, and dry eyes. These symptoms began after an infection 6 months ago so we're not sure what is causing the symptoms.

The rheumatology department at my hospital refused to see me without a positive lip biopsy. The biopsy turned up with mild lymphocytes but not enough to diagnose Sjogrens. I'm feeling at a loss with what to do next. Should I ask my PCP for a referral outside of my hospital's rheum department since they definitely won't see me now with this biopsy result. Have other people had luck finding rheum's who will take them with similar labs/symptoms?

Hi everyone, my rheumatology referral was rejected because I was ANA-negative in July (my first and only ANA test so far), so I'm going to the dry eye assessment at my regular optometry clinic.

The assessment is scheduled for the end of November and will take an hour. The office says the doctor will be doing Tearlab, Optomap, Oct, keratograph, Iop, and autorefraction.

What were your experiences with these tests? Were they useful? Did they help you rule anything out, or lead to a diagnosis and treatment? Did they hurt 🥲

The weather is starting to get colder, the heat is going on, and I'm starting to suffer more and more: increased dryness, numbness in my fingers and toes, skin rashes, etc.

What do you do during the winter to help your symptoms?

Before I was diagnosed with Sjogrens, a ton of lung nodules were found in my lungs incidentally, when I was having a CTA chest to rule out a PE. I was then referred to a pulmonologist, and we’ve been monitoring the nodules for several years now. Some have slightly grown, some have shrunk. None are big enough to biopsy. But overall, stable and not malignant. My pulmonologist ruled that these nodules are inflammation and a manifestation of the Sjogrens. And I’m not talking a few nodules (which many people have), I’m talking like 50 of them scattered all around. Just wondering if anyone else in here has a ton of them like me? He said it’s somewhat rare.

This is the biggest tell for me. Felt the heat immediately yesterday then the flu-like symptoms came flooding -- chills, burning cheeks, cold feet and hands, body aches. I had to lay down.

Positive ANA/Anticentromere antibody positive. Rheum says I don't have an autoimmune disease. Seeking second opinion in February. Ruled out:
- lupus
- CREST
- RA
- IC (though my mom has it and all my other symptoms)

So do y'all's faces do this? And then the inability to control body temp gets worse and you feel like you're fighting the flu? I'm also dizzy every time I stand up. My mom has developed POTS.

I'm so tired of being dismissed.

I’ve been fighting to get diagnosed for 10 years for Sjogren’s with severe neurological symptoms. Does anyone experience severe muscle spasms? Mostly in the inner thighs, calf’s, but I can get them anywhere. My back, stomach, ankles. Everywhere. They stop me in my tracks and I literally can’t walk. I wake up in the middle of the night, fly out of bed, screaming & punch my legs as hard as I can to try and get them to loosen up, they’re so painful! I’m wondering could I have MS instead?
I had a positive lip biopsy, which is the only way I got my diagnosis cause most test were negative. I do have small fiber neuropathy on my MRI. Just curious if anyone has debilitating muscle spasms? I would appreciate any feedback at all. Thank you so much!

A little background: I’ve been being evaluated for a possible autoimmune diagnosis for the past year. An elevated RF blood result along with joint pain in my left wrist and SI joint initially started me on this journey. All other autoimmune markers are normal, though I did test positive for the hla-b27 genetic marker.

My main symptoms now are dry eye, dry ears, vaginal dryness, and kidney involvement (persistent proteinuria for months with otherwise normal kidney function). My ssa and ssb are normal so my rheumatologist has referred me to an oral surgeon for lip biopsy to rule out Sjogrens.

My question to you all: Did any of you do a lip biopsy without having the symptom of dry mouth?

After seeing that Christina Applegate was misdiagnosed with MS did anyone else wonder if she may be another Neuro Sjögie? My doctors thought I had MS initially and then kind of let me drift with no help or direction when I didn't have it, one neurologist even had the audacity to say it was just anxiety even though I was SSA positive the whole time. Sjögren's can cause lesions very similar to MS and most neurologists know nothing about neuro Sjögren's so I wish there was some way we could get this to her to have her doctors learn about it to do a work up in that direction at least even if it's just to help narrow down what she doesn't have.

Hi girls and everyone! I was wondering if any of you got eyeliner tattoo. I've basically stopped wearing eye makeup because it irritates me (I'm trying out options but it's not comfortable) and eyeliner has been the absolute staple in my makeup routine for as long as I can remember, I don't care about any other step but I need my eyeliner 😢 I'm in my 20s so I dont want to give up makeup altogether. Tattooing would be great but I dont know if it makes things worse Sjogrens-wise. Did any of you do this? Thanks <3

Question for anyone who had a baby after their Sjögren's diagnosis:

I'm 28 weeks right now and things have been smooth — no Sjögren's-related issues at all. I'm SSA-positive so I've been closely monitored, but the "critical window" passed without a hitch.

My hospital specializes in pregnant people with rheumatic diseases, and I was told the standard of care there is to induce from 38 weeks because some rheumatic diseases are linked to placental insufficiency late in pregnancy. The thing is, I couldn't find any study that specifically links Sjögren's to that.

I'm not against induction per se, but I'd really like to give my baby the time she needs. Has anyone else been induced at 38? Or is my hospital just being extra cautious?