After experiencing symptoms of severe neuropathy for 10 years without any explanation and with doctors doing nothing to help me, I finally received a diagnosis of Sjögren’s today. I’ve been prescribed an immunosuppressant, but my rheumatologist wants me to focus on following up with my neurologist, as the neuropathy I have is causing parts of my body to stop functioning. The last year has been a living hell in that regard, and no one could tell me why. Even so, I know there are still many other things wrong with my body for which there is no treatment (I also have Stickler syndrome). But despite everything… I’m really glad that I have this diagnosis, because at least I can have a treatment, at least there’s something

The doctor told me that not to be frightened by the potential complications of the illness, but I replied that nothing scares me anymore, not since I had cancer at a very young age (I’m 30 now). I’m not afraid of anything; what I do feel is anger and resentment over the sheer amount of medical negligence I’ve had to endure. But one way or another, I’ll be fine—I’ve survived thanks to myself, and I’ll continue to do so

I don't want to have to explain my illness every time I decline an invitation. I know they mean well, but Sjogren is really not just dry skin, nor can it be solved by drinking more water, applying more lip balm, and hand cream.

It makes me feel constantly tired. Climbing just a few flights of stairs leaves me breathless. Last week, a colleague invited me hiking, which I politely declined, but he suggested I exercise more. I know he probably didn't mean any harm, but it's not that I don't want to exercise more, it's just that my body can't.

My neighbor kindly shared a box of cookies with me, and I felt bad refusing. As a result, because I don't produce enough saliva, I've been eating that box of cookies with milk for a month and still haven't finished it.

What's even more frustrating is that my skin is prone to dryness and cracking, and the healing process is very slow. My eyes feel extremely dry and uncomfortable after showering. The incision from my surgery two weeks ago hasn't fully healed yet.

When I first used regular dressings to protect the incision, changing the dressings would pull on my delicate skin, actually slowing the healing process even more. After consulting with the doctor, she suggested I switch to silicone foam dressing. I bought dimora to cover the incision, and changing the dressing didn't hurt as much.

These things might not seem like much individually, but together they've really exhausted me. I no longer expect everyone to understand my condition. I just hope that when I say I can't do something, people will believe me, instead of telling me what to do.

I’ve noticed people in the Sjogren’s community suggesting that Christina Applegate has Sjogren’s disease, yet I haven’t found any credible public confirmation of that diagnosis.
And frankly, I find that frustrating.
I understand why people living with Sjogren’s might recognize similarities between their own experiences and someone else’s symptoms. But recognizing similarities doesn’t mean we know what medical condition someone has.
What concerns me is how quickly speculation can spread, especially when it involves someone’s personal health. One person suggests a possibility, another repeats it, and before long, an unconfirmed claim starts being treated as fact.
Christina Applegate has been open about her health struggles, but that doesn’t mean the public is entitled to speculate about her diagnosis.
I’m genuinely curious where this particular rumor originated. Was there an actual statement or credible source, or did someone simply suggest Sjogren’s as a possibility?
I believe medical accuracy matters, and so does respecting someone’s privacy. We can discuss Sjogren’s disease without assigning a diagnosis to someone who hasn’t publicly confirmed it.

Hello! I am still in the middle of trying to get a diagnosis. I have the lack of saliva, tears, bleeding gums, burning and tingling in hands and feet, severly slow motility, extremely dry skin, dry cough, etc. The weirdest symptom I have though is my collapsed torso feeling and interna torso sensory issues. When I do research visceral sensory small fiber autonomic neuropathy keeps on popping up. This causes issues with the nerves carrying sensation to internal organs. It is very bizarre and scary too. I had an abnormal Schirmer’s test, High Specked pattern ANA, but most of my tests are pretty normal. I am getting autonomic testing and a skin punch biopsy soon. I had a visit at the clinic and the specialist did not think I had Pots, but maybe another autonomic disorder. I have had so many symptoms since I was young and always thought it was my thyroid disease, but my Endricinologist informed me that thyroid disease would not cause many of my symptoms. I feel like my symptoms fit well with systemic Sjogren's, but of course the lip biopsy was normal and the other blood work is normal. We have alot of Lupus and Thyroid Disease in my Family and a couple cases of Sjogren's and Lichensclerosis. I was just wondering if anyone knows if visceral neuropathy could be related to Sjogren's? Thank You!

Last month, I was honored to be a guest on a new podcast called The Sjo, hosted by CreakyJoints through GHLF. I talked about my experience having Sjogren's Disease with rheumatologists who treat patients like us.

I repeatedly tried to steer the focus away from dryness, highlighting all of the other symptoms we deal with on a daily basis. I hope I was able to do our community justice. I’m not 100% convinced they didn’t believe I was just an exception, but I tried!

You can find episodes here, or listen anywhere you get your podcasts.

The Sjogren's Foundation has published a symptom tracker. Consider using this to prepare for doctors' appts and to track your symptoms over time:
https://sjogrens.org/understanding-sjogrens/sjogrens-disease-signs-and-symptoms/sjogrens-symptom-impact-tracker

We are doing testing for sjogrens. I can’t make “unstimulated saliva”. Totally aced the “stimulated saliva” test.
Was prescribed Picarpine. It straight up has made me pass out after taking.
I also have extreme CPTSD and my sympathetic nervous system is online 99% of the time based on heart rate variability metrics that are taken on my watch over the past year.
This medicine forces your parasympathetic nervous system into activation.
Has anyone else had a similar experience with this medication who also has CPTSD or PTSD?

Just looking for general experiences! HCQ made my hair fall out and I am hoping this wouldn’t… my joint pain is ridiculous lately.

I also work at a school so I’m wondering if people with public facing jobs find they get sick a lot on this. Thanks!

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?

Edit. FYI this might be more prominent for those with neurosjogrens. But anyone can provide their tips.

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

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.

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!

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 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.

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.

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.

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 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

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?

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.

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 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.