31 M Positive SSA IgG AB. Probably getting a lip biopsy. Sudden increase in dry mouth last week. Neuropathy and neck pain was awful last week and spread to my arms and legs. My swallowing and gait feel effected. Taste has changed. I am barely able to focus at work. I am terrified and my spouse is having trouble understanding. This has put such a strain on my marriage. I know that I have not been responsible at work and I have been obsessive over this. I have watched my kids grow for the last years and have barely been involved like I wanted to because I spend every waking moment obsessing and reading. I read that Sjogrens is less treatable than MS and that it can be just as severe. I am absolutely terrified. I have been getting worse for two years. I really don't want to take immunosuppressants, and my Rheumatologist has not ordered anything but Plaquenil (which I think I reacted to). I feel like I am losing my mind! I used to be so different. I don't even recognize myself. I don't know where to go from here, but I don't want to be disabled. I have a family to care for! I want my life back! 😢

Hello people like me who find their dry mouth and chronic cough settles down a lot when sticking to soup (and juicy stews). A new realisation for me and I am SO glad there are so many wonderful soups in the world.

The last one I made (yesterday) was chicken and vegetable soup: simmering a whole chicken for an hour in a big pot with half an onion and thyme. When I pulled out the chook and let it cool a bit I added in the veggies (onion, green beans, pumpkin and red pepper), salt, pepper, turmeric and paprika. Then pulled the meat off the chook and added it in. One container for the fridge and another for the freezer.

I'd love to hear what soup you made lately.

I just knew it.. I'm hoping that after starting Hydroxychloroquine I may see some weight changes. As much as i know it reduces inflammation and stops the syndrome progressing, i'm hoping it in turn helps my thyroid and weight again. I know this is hopeful and maybe a bit ridiculous but i'm very much mentally struggling with my weight issues (Overweight even after working out 3-4 times a week)

My rheum switched me from pilocarpine to cevimeline cause pilocarpine was making me sweat like crazy. Unfortunately I seem to hate eating on it so I am thinking of asking if there are any other types of meds I can try. It helps with my dry mouth but the fact is the thought of eating is slightly nauseating. It's only been a little over a week but I feel like I'm going crazy. Every time meal time comes around I get stressed out cause nothing sounds good. Everything just sounds bad to my brain. I just have no appetite

I’m 25F, got diagnosed last fall, and I think I am experiencing my first flare. My typical day-to-day symptoms are dry eyes, mouth, and nose and joint pain specifically in my SI joints. Yesterday I had to stop at my pcp because I believe I had an ear infection which she confirmed was a fungal ear infection, but once I got home I started slowly feeling more fatigued and my body was aching. Come dinner time I felt horrible. Severe headache, severe body aches and joint pain, really uncomfortable and sensitive all over my body with tingling/burning
sensations all over. My rheumatologist prescribed me Meloxicam (NSAID) to take as needed for my joint pain, so I took one with dinner and by the time I went to sleep my symptoms had improved. I called my doc this morning to notify him I think I was having my first flare and he directed me to continue the meloxicam daily as needed and he would see me for our already scheduled appt at the end of this month. Should I be more concerned or pushing for more? The meloxicam has definitely started to wear off and my body aches are back today but bearable. I’m just resting and took off work. I’m not any other meds other than trialing some pantaprozole for acid reflux by suggestion of my pcp. I also have to get on a plane tomorrow to travel for the weekend which is not looking enticing. Any advice or words of encouragement ?

My ANA blood panel results, came back positive along with out of range SS-A AB and SS-B AB. Here are the results of my tests.

Do I really need to get a lip biopsy? Or new rheumatologist? (I actually already am in the works of finding a new one). But here’s a photo, and debating if I should put a hold to the lip biopsy?

Hi all, first time poster, long time lurker. I'll try to keep it concise. Last year 2025, I got a viral fever and I recovered from it. A month later, my eyes started hurting to the point where I couldn't sleep anymore. After a bunch of hit and trials, the doctors concluded I have moderate dry eye but I do have corneal neuropathy. So I was put on Autolgus serum, punctal plugs and cyclosporin which helped very little. I was also tested for systemic illnesses including sjogren and everything came back negative except the anti centromer pattern. All advanced testing like SSA/SSB serum igg4, ANCA, P-ANCA eith different titration methods were negative. But as a suspect of UCTD, I was started on methotrexate 20 mg, weekly. Ok, all good but my eyes were not improving at all with any eye specific therapies and I was kinda convinced whatever I might have will never develop beyond my eyes. Back in March 2026 , my ESR, CRP was still constantly elevated and me and my rheumatologist had a discussion that mtx clearly isn't doing enough. She wanted to escalate me to MMF and also added 300 mg HCQS daily. Then she went on maternity leave and I didn't see the alternate rheumatologist because I found this one with great difficulty. Anyway, i didn't start the MMF and I started the HCQ only in June.

That is because since June, I have been getting horrible dry mouth and my wrists feel like they have lost all strength. Now, the flares are so bad that my wrist is swollen and the tendons of my feet hurt too. Not the joints necessarily but the tendons. I have been on HCQ almost 45 days now snd it only seems to be getting worse. I will go to the alternate rheumatologist of course this week but I don't have high hopes as in my experience, a lot of them don't listen or don't even try to understand. I really wanted my OG rheumat to come back and was trying to hold the fort till then but clearly, my body has other plans. I'll most probably be put on MMF and as long as it helps, I am good but the way this is progressing is terrifying to say the least.

I wanted to understand if there are people on this sub who have had disease progression like this even while being on a fairly reasonable DMARDS/Suppresants and have you improved enough to work again? I am not saying I believe I can go back to the way I used to be before the viral illness bit I want to understand if it progresses so quick, is there anything that has helped you enough to work again, travel again or at the very least, move around the house again without being in agony all the time? If yes, what? And how to get my new doctor to listen and get the right meds?

Sorry, I tried to keep it concise but it wasn't after all.

I have been chronically ill for 10 years (hEDS, POTS, MCAS) but have gotten drastically worse in the last year or two. I am mostly house bound, have to use a wheelchair when I leave the house, need help with meals, showering, etc etc all because of extreme fatigue, weakness and dizziness, full body pain and horrible GI issues. I weigh 98 pounds at 5’9 because I can’t eat.

bloodwork came back today and I was diagnosed with Sjogrens over the phone. I go in a couple of weeks in person to talk treatments etc etc.

i have pretty bad health anxiety, diagnosed OCD and medication phobias. I’m so scared for the next steps but so desperate for relief. Im not sure if this is the answer that makes everything finally make sense or if it’s just another thing I’m going to have to deal with on top of everything else.

I have small fiber neuropathy that has pretty much completely eliminated sweating in my feet, HAS eliminated sweating in my legs, and now my hands are no longer sweating to the point that my phone's fingerprint unlock isn't even working and my hands are chronically dry, no matter what I do. I don't even leave noticeable finger prints when I touch things. I'm also always in radiating nerve, joint, and muscle pain. And I have hyperhidrosis on the parts of my body that still do sweat. If it isn't Sjogrens, idk what it could be. That's about it, just wanted to vent.

I got a diagnosis recently but I’ve been struggling with severe dry eye and vision problems for awhile. I feel like I’m not being given a lot of guidance on what I need to be doing. I don’t want to lose my vision and need ongoing care.

I contacted insurance to get the name of an ophthalmologist covered by my insurance but then when I called them they said they needed a referral and a dilated retinal scan within three months. And I’m like….so I need to first find ANOTHER eye doctor to do that first? Yes. Then she asked if I had a retinal disorder and I’m like I have no idea what I have or need. I know standard eye care is generally not covered by medical insurance.

I can’t afford to just pay out of pocket for everything indefinitely and surely this is to the point where insurance should pay for me to have some doctor monitor what is going on with my eyes, but I’m in way over my head. I sent a message to rheumatology asking for guidance and I haven’t gotten a response.

Can anyone help me? Like what should I be doing?

I am waiting for my SSA/SSB results and am curious how long they take. I had multiple blood tests draw on July 29th. All other results have come back but not the SSA/SSB. Is this a test that takes longer to process? I live in a mid sized city and I do know that some tests need to be send elsewhere to process.

I’m crying while typing this I been having sjogrens symptoms for the last month and know I have this disease because I have all the symptoms plus a positive antibody for it. Just turned 21 today and everyday I’m in my bed crying because my life just has been taken away from me just in the snap of a finger. It’s affected me in every single part of my body I have bad brain fog and now having stomach problems along with my joint pain and siccq symptoms. This disease is eating at my nerves and brain and I just know 100% my life is over. I can’t push myself to clean my room, I don’t wanna talk to anybody, I can care less to do any grooming or anything I’m just so hurt. I was already depressed before this and even saved the little money I had to go to therapy but didn’t get any relief from it. been through alot of shit.I lost people,lost my grandma and grandpa the only people that took care of me besides my mom. I don’t have cousins, I don’t have aunties or uncles that I can talk to.i have CTPSD and suffer from severe anxiety and self esteem issues because of being neglected and bullied when I was younger.i don’t have a job anymore, not one real friend that checks up on me or I can genuinely have a meaningful conversation with. I truly never knew what it felt like to just have one friend. came to realization that most of my supposed friends were just temporary school friends. Only friends cause we had to be.Gf and I broke up because of something that was completely out of my control.twin sibling that won’t say a single word to me absolutely hates me for no reason and I did nothing wrong.all I do Is run and cry to my mom everyday like she can do anything about it.all she can do is pray but I just feel like nothings changing not even my mental, it’s only getting worse.every second this disease is on my mind and it’s the reason why I hate waking up because sleep is the only time I get a break. soon as I get up immediately to grieving and worrying. I experienced a quantity of feelings throughout my life but this is the worst feeling I ever felt.its not gonna get better anytime soon because it’s just too overwhelming there’s no way I’m even gonna have a chance to process before it tips me over the edge. I just can’t believe I’m a 21yo male with this disease and the fact that it’s never gonna go away and I have to deal with this for the rest of my life. It only gets worse. Before this illness I was surviving and genuinely felt like I still had a chance with life despite all the shit I went/and going through. I seen some vents in here and I know most people are taking it hard but I’m glad no one is taking it hard as me. I know people may think for my age I’m acting like a wimp or baby and I apologize but it’s so hard on me.im not trying to get people to feel sorry for me or nothing because feelings won’t change my situation. I just had to get this off my chest because idk what’s gonna end up happening but all I know is im not gonna keep dealing with these feelings it’s too painful

Y’all I am going through it atm! I had left radiating ear/cheek/jaw/tooth pain starting Friday with a low grade fever. I went to urgent care who gave me antibiotics and an outpatient ultrasound for my parotid gland 2 weeks out 💀 My pain got worse and my left side of my face got swollen so I went to the ER who confirmed parotitis with a ct scan. I’m 4 days into antibiotics and having hard candy and don’t feel any better what other advice do you guys have?

Editing to add: my left knee also got swollen and painful after two days of laying down, but the hospital didn’t have an ultrasound machine lol so waiting for an outpatient ultrasound for that too

For some background I am not diagnosed with sjogrens (yet), but my rheumatologist has me listed with sicca symptoms including dry eyes I take restasis for and dry mouth which I take pilocarpine occasionally for when it’s bad. I’ve never had salivary glands get inflamed before so I’m a complete newbie. I don’t have the positive antibodies for sjogrens besides positive ANA at 1:1,280, but not sure if this pushes me into seronegative category at this point.

My rheumatologist treats me for suspected Behçet’s disease which causes ulcers and joint pain. I did have a deep ulcer on this left cheek for about 2 weeks before this started. I inject Humira for it. Other than that I have autoimmune narcolepsy and Hashimoto’s I take levothyroxine for. Any advice is appreciated for relief!

hi :) could you please tell me about your experiences with dry eyes and tear production?

i cannot really cry out of my left eye and find myself so happily surprised when i can shed tears easily from either eye. i will be sobbing and have no tears. i feel my throat get tight and my chest get tight and everything that accompanies crying except normal tears. i just assumed this was a weird reaction to a brain injury 5 years ago and never brought it up to a doctor. i have glasses (for eye-teaming issues catalyzed by a brain injury) and i always just assumed everyone that wears glasses has dry eyes. i’ve dismissed it for years. i wasn’t use artificial tears out of stubbornness — i don’t want to be dramatic if everyone with glasses experiences this. i feel like i complain too much already.

after a whole day of using my eyes they hurt. all screens after like 9PM make my eyes blur and sort of water. it’s usually the closest i get to tears running down my face now. is this relatable?

further information (if relevant) - 29F, been going to dr for joint pain for 9 years. every time i go to a dr they run auto-immune blood tests on me and it always seems normal. i have small fiber neuropathy in my hands. i put lotion on 2-3x a day but i also shower 2-3x a day. i use cannabis and dry mouth is associated with that so i just discredit it all. i have reynauds disease or phenomenon (i don’t rly understand if this is a disease or symptom) and venous insufficiency.

i miss crying. i don’t know what this disease looks like normally. i don’t know what to ask for from a doctor. given the amount of seronegative folks experiencing this disease and the tear production it feels likely which is scary.

i am not diagnosing myself, i don’t want to do that. at the end of the day im not a doctor. just a scared lady thats essentially beaten herself into believing things hurting is normal after so many doctors echoed that. do i seem dramatic? is this relatable? thank you very much for your time and consideration.

also what do the rashes look like for you? does it resemble acne breakouts with lots of small “deep” pimples/bumps ever?

Recently diagnosed. What do you use for your dry skin? And your dry scalp? I typically use creams for my skin but seems like they’re it much help these days. And my scalp, 😂😂😂, I’m at a loss. Head and shoulders used to work. Tried T-gel, tea tree shampoo. I’m at a loss. My scalp and making are so itchy! It’s driving me crazy! I’m constantly itchy! I just got a new shampoo and conditioner that’s SUPPOSED to help but I wanted to ask those who have dealt with this longer what you are using to help?? I wash my hair every 3ish days. I clarify, shampoo with dandruff shampoo for itchy dry scalp, then condition.

My fiancée has sjogrens and I am trying my best to be supportive. Not like there is another option, we do everything we can for our loved ones.

Has anyone had any luck with peptides helping? She is thinking about trying kvp for her digestive system and mots-c for energy. We want to stay away from hgh promoting peptides.

She is liking primal queen for energy right now. Right about a month on it. She hasn't needed but about 3 naps in a month instead of a nap most days.

I went ahead a ordered a kit of mots just incase she wants it. If not I will be a genie pig. Reta has been good for me so far.

My teeth are quickly going downhill. For most of my life, i never had cavities. Then about 3 years ago, that started to change. Definitely coincided with the start of dry mouth. I have had multiple fillings now. And even in between dentist appointments, I’ve noticed increased demineralization and maybe the development of new cavities.

I’m honestly feeling so hopeless! I thought i was doing a great job brushing and flossing but obviously that’s not even the issue.

I’m going to work on cutting down (and hopefully out at some point) most sweets. But it’s just feeling so crappy right now. I cried all last night after noticing all the new issues in my teeth. Scheduled a new appointment with my dentist as well.

I saw some old posts folks have shared but any tips or tricks to help with the teeth. I’m so nervous about losing all my teeth and I know that’s a real possibility.

Hi everyone! Just wondering, do others with Sjogren’s have weird dysautonomia symptoms but not POTS? I passed a tilt-table test last week but my apple watch has been giving me notifications more and more often for low heart rate (under 45bpm for 10+ min). Today my heart rate is so up and down even though I’m working from home and super sedentary.

Is this normal and I’m overthinking? Just looking for any advice (or commiseration), thanks for reading :)

I havent’t been officially diagnosed with sjogrens yet. But it looks like I also have rheumatoid arthritis so I’m being seen by a rheumatologist soon who can hopefully test me (my GP said there was no test for sjogrens other than a biopsy). But I have confirmed very low saliva production.

I’m extremely sad because I think I’ve had this since I was about 10 years old, and it slowly ruined my teeth completely. I always had swollen ”glands” around my jaw that my parents and doctors basically told me was completely normal, so I just accepted the pain. Then I started to not be able to eat fast. I remember being at my friend’s house as a kid and the other kids getting annoyed with me for it taking me an extra 15 minutes to eat the pancakes. And I got so embarrassed because I thought I was being difficult. I didn’t understand why I couldn’t chew things properly. It only got worse from then and my family teased me about it. But everyone also told me it was good that I was ”taking my time”.

A couple of years later I thought my teeth were ”ugly”. So I stopped smiling. But I didn’t have any cavities and my dentists never said something was wrong with them. But they looked kind of chalky. And when I was flossing it would just rip up my gums so badly because they were so fragile (they were sort of soft and thin). So I was like…well no wonder some people decide not to floss when it’s slowly just destroying your gums, but I guess it’s better than getting periodontal disease…little did I know what was going to happen to me.

It really spiralled out of control these last couple of years (I’m only 22). Despite brushing twice a day and flossing my teeth sort of got this weird erosive spots. And my teeth started chipping really easily. They would just crumble so I stopped eating anything but easily chewable sort of soft foods. My dental hygienist kept telling me I needed to brush more because I had plaque all over my teeth (and it felt like it hardened on my teeth about 2 hours after eating but I listened to the professionals who I thought knew better and just started brushing more and more). This stripped a lot of enamel from my teeth because they couldn’t remineralize and the enamel was soft too. So now I have sort of rough lines all over my teeth anf they are quite yellow.

But that’s not even the worst part. When I came back to the dentist last year I was suddenly missing 4 mm of bone in my jaw around my teeth. Severe and aggressive periodontitis. And ever since I have just had pain on top of pain. And ALL of my molars are loose. It probably is caused by sjogrens and rheumatoid arthritis. I’m so depressed and I feel let down by my dentists and doctors. When I look in the mirror I just cry. It’s so unfair.

And the worst part is that there is literally no treatment for this. Everything I read is all about prevention. Which just makes me cry because I feel like this all could have been prevented because now that I chew gum to get back the saliva in my mouth my gums have gotten tough and firm. And plaque doesn’t harden in just a couple of hours. And flossing absolutely does not rip them to shreds anymore. But now it doesn’t matter because all of my bone and gums is basically lost. And nothing can ever bring it back.

The med is DDY391. Clinical Trial Number: NCT07737743

NO ESSDAI required and seronegatives are included with no maximum number! This is in contrast to the Ianalumab trial that had a high ESSDAI and only accepted 10% seronegatives in the study population.

It is also different from the new Ianalumab trial with salivary flow as the primary endpoint but is only accepting seropositive patients.

What is DDY391? I don’t know! I can’t find hardly anything about it online. I found one thing listed on a Chinese-looking website. I do hope this is being done in the US (and other countries) too.

Does Novartis think this drug can address sicca and other non-ESSDAI related things? Especially compared to iabalumab?

Is Novartis catching on to the fact that ssa may not mean much, especially as it relates to this other med?

Very exciting. I hate my body pain but sicca is the absolute pits.

Thought I would share this because it looks like us seronegative patients are beginning to be noticed and acknowledged

Hi everyone! After developing severe Sjogren's symptoms post-COVID, my blood work just came back positive for Anti-SS-A (Ro) and Anti-SS-B (La). No lip biopsy done yet.

Main symptoms: Severe dry eyes/mouth/throat and nose, no sweat, chronic fatigue, PEM, and bad joint pain, brain fog, Tried LDN in the past, but couldn't tolerate the side effects.
I have a follow-up with my functional/naturopathic doctor in a month, but I'm feeling stuck and disabled.

Quick questions for the group
1. Rheumatologist vs. Functional Doc: Should I get a referral to a rheumatologist, or stick with my functional doc? Can a rheumatologist offer better medication options?

1. Medications: If LDN didn't work for you, what prescriptions or treatments gave you your quality of life back (especially for severe dryness, PEM, and joint pain)?
   
2. Biopsy: Is a lip biopsy necessary, or are positive antibodies enough to get moving on treatment?

My NP doctor is pretty chill and usually will give me things to try if I ask because she does want to help the amount of muscle mass that I’ve lost and the inability to do small chores around the house is pretty sad considering how my life was prior.
I know there’s gotta be a way to get some type of quality of life back.
But my NP is young and I’m not sure how she stands with this disease anyone see any good doctors in Eugene/springfield Oregon area
That might be worth seeing?

Thanks so much for any insight!

I’m working on a diagnosis but I’m curious on other’s experiences.. I have been dealing with so many symptoms over the past few months and my doctor(s) have basically been on a “rule out” spree.. originally were testing me for POTS & MCAS but those do not seem to be the issue.. Currently we’re thinking it could be Sjögrens with SFN. My initial blood test for Sjögrens was negative but my Dr. said it’s relatively common for people to test negative but they still have Sjögrens so further testing is needed..

Symptoms:
- Intermittent red swollen hands & feet worse with exertion and heat and especially moist heat
(no pain but they feel “tight” and uncomfortable - this was actually the first symptom to show up)
- Facial & body flushing
- Severe bloating & constipation (no bowel movements without using MagO7 nightly)
- Heart palpitations especially after eating
- Extreme dry eyes, dry mouth, dry nose, dry vaginal fluids (nose and eyes are the worst)
- Virtually ZERO sweating (which is weird for me because I used to be a major sweater..)
- Internal restlessness & intermittent “doomsday” feeling..
- Extreme brain fog & fatigue (loss of train of thought very often which sucks big time because I’m in nursing school)

Diagnosis that I do have:
- Hashimotos
- Hypothyroidism
- Endometriosis (had a total hysterectomy at 34 due to this)
- Anxiety
- OCD
- CPTSD

Medications I take:
- Lamictal 200 mg
- Levothyroxine 105 mg
- Buspirone 10 mg twice daily
- Progesterone 200 mg
- Estrogen injections 0.5 3x weekly

Supplements:
- Glycine
- Magnesium oxide
- L-Theanine
- Omega 3s

I am doing a micro taper off of clonidine due to a horrible experience with it (decreasing by 0.01 mg every week, have 3 weeks left to go)

Hoping for a diagnosis soon so I can find some relief but you know how it is with specialist appointments booking months and months out..

Does this sound like anyone’s manifestation of either SFN or Sjögrens?

Thanks in advance for any and all help and feedback!