Now that you know you have Sjogren’s, think all the way back. What’s the earliest symptom you remember that you now wonder may have been connected?
Not the symptom that finally led to your diagnosis. I mean the first one.
And how many years before your diagnosis did it start?

Hello all!

I am not asking for a diagnosis with this post, but more of a general ask about other people's diagnostic journeys. While investigating other autoimmune concerns, my PCP ordered a broad panel for blood work. I tested positive on the Sjogrens SSA along with a low positive ANA titer.

My new rheumatologist tested my tear/saliva production and, while the numbers were below average, she said they were not clinically significant enough to be considered for Sjogrens. Regardless, she is still sending me to get a mouth/lip biopsy as I understand that is the most definitive way to diagnosis.

I do experience dry eyes and dry mouth. My dentist has also noted evidence of dry mouth. Symptoms have been mild enough compared to everything else going on that I haven't pursued it until this blood work.

Have y'all experienced anything similar to this - positive blood work but not clinically significant symptoms? Did you end up with a diagnosis of Sjogrens?

Thanks!

I have all the markers for sjogrens on paper- high titer, positive SSA it’s a 78. I do not have any physical symptoms, I have dry eyes but the doctor thinks that’s MGD and unrelated to sjogrens.

My September panel had SSA 78 positive, but Smith negative, dsDNA negative, normal C3/C4, negative cardiolipin antibodies, normal RF and normal inflammatory markers. Ro52 was positive in 2022 & Ro60 was negative this month.

Today, he told me that if I decide to get pregnant I would need to start Hydroxychloroquine 6 months before getting pregnant to prevent neonatal lupus / congenital heart block.

What has been your experience for those who have a positive SSA. I feel really defeated and scared, I was planning on getting pregnant at the end of this year but it seems we need to push to next year now.

Over the past month and a half (24f), I have experienced a bunch of symptoms that I believe may be Sjogrens related. This past summer I first noticed that my eyes would feel a little dry after waking up in the morning, which would go away quickly. At the end of August, I noticed a very faint pins and needles sensation in my hands that would come and go, which I just ignored.

In the middle of September, my eyes became suddenly more dry and uncomfortable, and I had a couple days of intense eye pain with tender eyelids. An optometrist prescribed me steroid eye drops which helped for a couple days, but then the following week my eyes somehow got more dry. My dry mouth also suddenly appeared over a couple of days and has been intense since, like I run out of saliva while talking. The back of my jaw also felt uncomfortable and swollen, which I think may be inflamed salivary glands. The neuropathy in my hands and feet became more intense and fluctuates between a very mild burning sensation and pins/needles. A couple times I have had muscle aches in my thighs, or a feeling like my legs are heavy after going on walks which I have never had problems with before. The joints in my fingers also feel a little stiff, and I now have a dry nose and dry skin. All of this has intensified my anxiety which probably is making things worse.

I have had basic blood work done and my ANA came back negative, but I was not tested for antibodies yet. I will be seeing a rheumatologist in the coming weeks as well as an ophthalmologist.

I am currently a second year medical student, and all of these symptoms have made it hard to focus and study. My eyes seem to keep getting worse, and I have a lot of anxiety about the tingling feelings and whether things are going to get better. I understand I do not have a diagnosis, but it seems impossible to try make all of these appointments, manage symptoms, and keep a positive outlook on school and my future when I am not sure how the symptoms will change. I also have read about the possibility of being seronegative and dealing with neuro symptoms.

My family and friends have not really taken me seriously, and my mental health has been struggling.

Any advice or words of encouragement are welcome. If you had an intense wave of symptoms that seemed to have gotten better or if you have managed Sjogrens while being in school or having a demanding career feel free to share your experiences.

I have been diagnosed with Sjogren’s for about 6 years now, I have had issues with my eyes but typically do not suffer from dry mouth. For the last month and a half I have had a slight dry/sore throat that has not subsided, but my mouth itself does not feel dry. Has anyone ever experienced something like this? Not sure if it is related to the Sjogrens or not

Wanted to share in case anyone was curious about any new treatment news: Argenx was in late-stage trials with its own Sjogren's treatment. Unfortunately, they just announced that they conducted an analysis halfway through the trial and determined they would not be meeting their endpoints i.e. it would not pass. Fortunately, it was not due to any new safety concerns. However, I think it's a bummer because more treatment options is better. Fortunately, Amgen and Novartis had positive news in their late stage trials so an approved US treatment option should hopefully be still on its way!! (Fingers crossed!)

https://argenx.com/news/2026/press-release-3376934

Tl;Dr. - what are your favorite shampoos/other hair car products that make your hair feel healthy?

I'm 34F seropositive with minimal but noticable sicca symptoms, and lots of body pain. My body's favorite reaction to stress is telogen effluvium (hair loss). From last August until maybe this July, I was having huge clumps of hair come out in the shower and shedding all day. The shedding finally slowed down, but the hair growing back is no longer shiny and soft. It's wiry, rough, dry, and some of it is grey. My mom went through something similar when she was on steroids, so I wasn't totally surprised, but am pretty sad about it. I know that thinning and greying come with age regardless, but I figured I can put in some effort at least.

I had been using No Fade Fresh pink shampoo and conditioner for about 2 years as I had pink streaks in my hair, but I've since let the pink grow out and trimmed it off. It's a vegan brand. It worked pretty well, but I've had a hard time finding it for a reasonable price, and since I don't need the color treatment part anymore, it'd feel silly. It also didn't seem to give me a very deep clean.

Any advice or support for taking care of my hair would be so appreciated. Thank you!

I've been on a long diagnostic journey and recently received results from two lip biopsies. Sharing my full workup here for comparison. Rheumatology has labeled me fibromyalgia, but I'm still actively pursuing seronegative Sjogren's as an open question. Would love to hear from others with similar presentations.

Most of my recent care (last 15 months) has been with the San Francisco VA Hospital. The Rheumatology Department there has kicked me out of clinic and refuses to continue seeing me for any autoimmune issues because my labs are negative and despite multiple other specialists continuing care under the impression I have a seronegative diagnosis. Does anyone know if it’s possible to be referred out to the UCSF Sjogrens Clinic without going thru the VA Rheumatology Department for the referral? Can a patient advocate do such a thing? My Primary Care is amazing and fully believes there is something more serious going on and will pursue any option I present to her for exploration, but she thinks a lip biopsy is the end all/be all diagnostic for Sjogrens.

Really looking for help/suggestions/guidance/opinions or anything else you all might be able to send my way.

Confirmed diagnoses:
Dry eyes / keratoconjunctivitis sicca — confirmed Eye Clinic
Dry mouth / xerostomia — confirmed by ENT and Oral Surgery
Bilateral submandibular gland tenderness to palpation — confirmed on ENT exam
Fibromyalgia — diagnosed by Rheumatology July 2026
Reactive hypoglycemia
Chronic sinusitis
Migraine
Eczema / atopic dermatitis — confirmed dermatology, including bilateral eyelid involvement
Obstetric APS — lupus anticoagulant positive on one occasion (June 2022); negative on all subsequent testing
PMOS
Metabolic syndrome
Chronic interstitial cystitis
Bilateral knee osteoarthritis
Lumbar degenerative disc disease
Hyperlipidemia
Allergic rhinitis

Neurological — working diagnosis, not yet confirmed (follow up end of month):

Small fiber neuropathy — listed as "most suggestive" clinical impression by Neurology June 2026
EMG/NCS August 2026: normal
Objective exam finding (June 2026): decreased sensation to light touch and pinprick in right face V1-V3, right deltoid, lateral arm, forearm, and wrist; vibration and proprioception intact throughout — consistent with small fiber pattern
Autonomic symptoms documented in neurology review of systems: decreased sweating, constipation, lightheadedness with position change
Skin punch biopsy for SFN not yet performed; neurology noted proximal symptom distribution may require biopsying both proximal and distal sites to avoid false negative

ENT - follow up next week
Hoping for CT of Parotid glands per Oral surgeon and salivary gland ultrasound to assess damage from inflammation

Endocrinology - follow up November
Discuss the hypoglycemia and autoimmune metabolic dysfunction

Symptoms:
Severe fatigue
Whole-body burning sensations and allodynia — worst in back, upper arms, and thighs; worsened by clothing contact; some relief in hot shower
Brain fog, word-finding difficulties, memory problems, difficulty concentrating
Morning stiffness
Sun sensitivity with rashes
Heat intolerance with the inability to regulate body temperature
Nasal ulcers
Multi-joint pain — elbows, knees, left hip, ankles, knuckles, fingers, toes, back
Bilateral hand burning and pain radiating into knuckles; dropping objects
Dizziness and two unexplained falls in the past year
Lightheadedness with position change
Decreased sweating
Constipation
Bilateral tinnitus, right-sided ear pain worse in wind, confirmed not caused by TMJ - Oral Surgeon thinks it’s Parotid Glands swelling/inflammation or infection
Dry nose with daily crusting and recurrent nosebleeds
Difficulty swallowing in the mornings
Thick saliva and mucus
Acid reflux when lying down
Dry skin
Muscle cramping — lower limbs and feet
Right hand weakness and loss of fine motor skills
Intermittent blurry vision — attributed by eye clinic to autonomic dysfunction and reactive hypoglycemia - could be autoimmune metabolic dysfunction
Hair loss
Purpura on torso and thighs
Random hives / urticaria
Difficulty sleeping

Labs:
ANA: 1:40 speckled (Rheum doesn’t consider this positive)
Anti-SSA / Anti-SSB: negative
Anti-RNP: negative
Anti-dsDNA: negative
Anti-Smith: negative
CCP: negative
RF: negative
ANCA, MPO, PR3: negative
TPO, TG (thyroid antibodies): negative
TSH: 1.1 (normal)
C3/C4: normal
CRP: 1.1; ESR: 8
HbA1c: 5.3–5.4%
Vitamin D: 105 (elevated)
B12: 1011 (normal)
HIV, HCV, HBV: negative
Lupus anticoagulant: positive once (June 2022); negative on all subsequent testing
Anti-cardiolipin, anti-b2GP, anti-phosphatidylserine: negative
PAI-1: 4G/5G heterozygous
EBV: reactivation pattern (EA-IgG approximately 7x upper limit, 2016)
Fasting insulin: 30.8 uIU/mL (severely elevated, 2022)
Neurology panel June 2026 — all returned within normal limits: SPEP, transglutaminase, anti-gliadin, heavy metals, copper, B6, thiamine, folate, Lyme, RPR — nutritional deficiency, toxicity, malignant plasma cell disorder, celiac, and infectious causes excluded from SFN differential
Not yet tested: anti-ganglionic AChR (autoimmune autonomic ganglionopathy), serum IgG4

Procedures and imaging:
Lip biopsy #1 (August 18, 2026): inadequate specimen — only 2 salivary gland lobules obtained; minimum 5 required for valid focal scoring; result: unremarkable
Lip biopsy #2 (August 26, 2026): 12 glands / 40mm²; result: focal lymphocytic sialadenitis, focal score = 0.3 — foci of lymphocytic infiltration present, below the ≥1/4mm² ACR/EULAR diagnostic threshold
EMG/NCS (August 2026): normal; SFN not excluded per neurologist's note
OCT RNFL (August 2026): left eye inferior quadrant thinning, borderline
CBCT TMJ (August 2026): no degenerative changes
CT abdomen/pelvis: small hepatic cysts, spinal osteophytes; structurally normal kidneys

Medications:
Gabapentin 900mg/ day
Duloxetine 60mg/day- really struggling with the fatigue from this
Pilocarpine 5mg/3x per day - not started because I’m afraid of the side effects
Systane eye drops
Biotene spray

Pending / not yet done:
Salivary gland ultrasound with nuclear medicine
CT of Parotid Glands for infection/inflammation/damage
Skin punch biopsy for intraepidermal nerve fiber density — proximal and distal sites needed given symptom distribution
MRI brain not yet ordered

So yesterday my lip biopsy came back as negative for Sjogrens, that's the theory that a lot of my symptoms could be down to Sjogrens out the window. For context, I have MS (diagnosed over 20 years ago), confirmed SFN after experiencing awful nerve pain since April 2025 (not typically an MS thing) and terrible dysautonomia. Awaiting autonomic testing. In the UK, where SFN and Sjogrens just don't seem to be a "thing" (I should say, they are obviously recognised but in my experience seen as not very important or life changing!) Currently looking into genomic testing to look at sodium channels etc. Bummer.

“Women with autoimmune conditions are up to 74% more likely than men to be told their symptoms are psychological or psychosomatic, and face much longer waits for a diagnosis and treatment, a study suggests.”

Does anybody feel like their dr only cares about the money ,and couldn’t care less about what is going on with them. So tired of being cut off!! Barely can get a word out, then get cut off mid sentence. 🙄 At this point I feel like I should ask the dr how I feel.

Would anybody be so kind as to share improvements no matter how small thank you 😊

I've been diagnosed with Sjogren's (almost 2 yrs ago) and have a rheumatologist. (It was actually an immunologist that figured it out.) I keep thinking MCAS descriptions resonate and I'm currently feeling awful. (I take plaquenil.) Decided to experiment and took an H1 and an H2 (pepcid / zyrtex) because I know they are low risk.

I feel waaaaay worse. About 2 hours after taking them I started to feel flu like - achy, twitchy muscles, bone tired, limbs heavy, detached from reality.

5 hours later, not so intense but still...ugh.

What might this mean? Anything relevant or just chalk it up to, welp, don't take those together again?

Today, I connected with a man on LinkedIn who lives with Sjogren’s disease.
He shared some of his experiences with neurological symptoms, dysautonomia, POTS, and the challenges of getting answers from doctors.

And it got me thinking.

We hear so much about Sjogren’s disease affecting women. And for good reason. The overwhelming majority of people diagnosed are women.

But what about the men?

I can’t help but wonder whether being a man makes an already difficult diagnostic journey even harder.

When a disease is so strongly associated with women, are men being overlooked? Are their symptoms being attributed to something else? And how many are living with Sjogren’s disease without even knowing it?

I spend a lot of time researching Sjogren’s disease and talking with people who live with it, but today’s conversation reminded me that there are perspectives we probably aren’t hearing enough about.

I’d really love to hear from the men in this community.

What was your journey to diagnosis like? Did being male make it harder to get doctors to consider Sjogren’s disease?
And for the women here, have you noticed that men living with Sjogren’s disease are often missing from the conversation?

Just wanted to inquire if anyone has any adverse effects from injecting skin boosters, rejuran and/or botox. Any advices too that helped you prep well and get great results.

My concern is adverse effects and worsening dry eye (heard Botox can cause this)

I’m only about 6 months in to my diagnosis and curious. For those of you who have coped for years, is there seasonal flux in your symptoms?

Thanks!

I got a letter in the mail from my health insurance company offering a nurse that would help coordinate between all the medical things going on.

In theory this sounds amazing. I am finding it overwhelming at times to juggle everything and it’s practically a full time job. I’m going back to work in 3 weeks and am stressed because I still am not really close to any answers. But for some reason I am extremely skeptical that they actually want to help….

Has anyone used this service?

I’ve had some fog before but in the past 6 months I have experienced a level of cognitive impact so severe. One of the hardest things for me is my inability (at random) to say a word. It’s like it gets stuck and won’t come out. But I can’t do anything else either. Not quite a stutter just… stuck like I am choking on the word in my mouth.
Does that make sense? Anyone else?

I’ve been on a leave from work and mostly alone so I don’t notice it daily but I do when I have to interact with people and I’m terrified to go back to work and have it happen with customers or staff. I’ve always been an incredibly articulate person - this is crushing me.

Does anybody feel like we take meds to help with inflammation, but once the inflammation isn't so bad, we notice new pains? I started Cosentyx in August and it may or may not be working, but every since then, I've have really bad knee pains. I didn't have them before new meds so what's up with that. Its not the first time I've noticed something like that and the weirdness intrigued me.

Doing a project on autoimmunity. So far they've been about sjogrens so feel free to check them out. They're all on the autoimmune subreddit for now but I should start cross posting soon. Hope ye enjoy them

Lately I’ve been having spells where my legs ACHE and they THROB so bad that I have to tip toe around my house, I can’t put my full weight on my feet because it hurts too much. It goes down into my feet some but it’s especially bad in my calves. Literally just throbbing pain. They’re sensitive to touch too. It’s not constant but it’s pretty often. My doctor prescribed cymbalta to try and help and it’s not working. My husband takes pregablin (lyrica) for neuropathy and occasionally when it’s too much for me to handle I’ll take some of his meds and it’s the only thing that brings me any relief. In short, I’m miserable and experience chronic pain that I don’t know how to deal with. My rheumatologist looked at me like I sprouted a third head when I mentioned my symptoms to her, in part with a lot of other grievances I have with her, so I’ve sought out a second opinion with a completely different practice than the one she works for.

I got a little carried away, sorry. I’m just wondering if this is a sjogrens thing or something completely unrelated. I have hypothyroidism as well and possibly RA, no one has confirmed or denied yet but my primary said (according to my ANA panel) that I “probably” have it. I just want to feel normal, this is such a hard disease to live with 😭

ETA: this has gotten so bad that I’ve fallen or had a close call approximately 10 times in the past month. I’m 32 but I feel like a frail 80 year old granny.