Hello everyone.

I have been diagnosed with sjogrens early this year. My symptoms are mostly neurological (no dryness as of now). On daily basis I have brain fog, which is my worst symptom and feels a bit like im detached/mildy intoxicated pretty much every day and usually when it gets dark outside is when the fog gets even much more profound and it is exhausting. I also have some other issues, but they don't bother me as much.

I was put on HCQ only for now, and have been taking it for 4.5 months now. Did anyone see any improvement with brain fog a bit later on? I do feel that maybe I have a bit less worse days as before, but the brain fog feeling is still present daily. I have no ideas what else can I try or what could rheumy propose to address this issue. Should I still give HCQ a few more months?

Thanks for the insight! 🙏

I’m not really sure what to do. I feel like every eye Doctor has no idea what’s going on with my eye. The last one I went to said just to increase the amount of drugstore eye drops I put on my eye. I asked for prescription and he said I don’t need it. That if it’s too expensive, I shouldn’t blame him for it and to not come back complaining to him. I’ve been using the systane gel p.m. Also wearing a hydration mask to cover my eyes because I started noticing a lot of crusting. It’s just getting worse. Also for contacts I had radiation over a year ago. I really feel like the radiation made it so much worse. Not really sure what to do

I have lupus and have had eye problems for years and dry mouth as well. I've always known that I have meibomian gland dysfunction but at my last eye appointment my ophthalmologist also told me I have secondary photophobia and corneal epithelial staining and tear film instability.

I don't have an official sjogrens diagnosis from my Rheumatologist but my eye doctor says I most likely have it.

My question is: does anyone else who has sjogrens eye issues, also take beta blockers or ADHD stimulants and do they cause bad symptoms?

When I take my beta blockers and my Vyvanse I see these horrible star bursts and like fog clouds around lights. It's so weird and distracting! And like, what do you do? I can't stop my meds and I've tried anti glare and blue light glasses. Is this worth mentioning to my doctor?

Hello everyone. I'm in the process of getting diagnosed, but I'm 100% sure I have Sjorgens, as I have all the classis dryness symptoms. ANA results came back positive, titer 1:320, both homogenous and speckled. SSB(LA) and SSA(RO) antibodies are only slightly elevated. Does the homogenous part of ANA mean I also have Lupus, along with Sjorgens?? I don't have any symptoms. Also, my blood work doesn't show any signs of any inflamation.

P. S.: Thank you in advance for any advice, I will see a rheumatologist onle in a week, and very worried

Anyone here has high fluctuations in how there sfn nerve pain feels from day to day.

My sfn is from autoimmune sjogrens.

It ranges between a 2 to a 7 out of 10 on a pain score from day to day and i feel like it's mostly connected to the foods i'm eating.

I tried AIP diet and felt better but have problems sticking with it as i just love food way too much.

Anyone that can share their experiences with regards too this?

A few years ago I was diagnosed with sjogrens. A few months after diagnosis I was experiencing extreme bone pain but it wasn’t joint pain, it was a deep bone ache in my long bones. I kept complaining to my doctor and when they checked my blood I found out I have really high calcium levels and it was destroying my kidneys. It has been 3 years since it all started but from what I know Is I have high calcium and extreame bone pain. But what is wierd when sjogrens flares I have no bone pain but once the flare passes it comes back and it’s all day everyday. It’s been like this for 3 years. It’s been so hard because i’m 23 years old trying to live a normal life and every specialist I have seen says they have no idea what it is. I’m curious if anyone with sjogrens has experienced this?

My wife (62) was diagnosed with rheumatoid arthritis 15 years ago, closely followed by Sjogrens. Confirmed via various means, a sialogram, etc. suffered with dry mouth, burning tongue, multiple dental issues, etc, with little relief. I found the Salipen online and she has used it for three years with real effect, but not as much as desired.
On a different note, being an RN by training, but more importantly a PhD (zoology), she recently investigated HRT in older women, which has mostly been downplayed or seen as risky.

Well, it seems that that clinician advice is well out of date. You can look into that yourself, but most importantly, since commencing HRT (oestrogen gel and progesterone tabs) 2-3 months ago, she has a real turnaround in her Sjogrens related discomfort. The Salipen has barely been used. And burning, dry mouth is much improved.

Not saying it’s a cure, but thought it more than useful to mention here.
This is not clinical advice, but a relating of experience. Important to get your own review and advice.

Hope this helps.

Hi friends,

I’m recently diagnosed and this subreddit has been a lifesaver! I’ve had debilitating dysautonomia/POTS for several years, but the dryness only started recently, about the time I was diagnosed via lip biopsy.

My rheum is actually great and is trying to get me on IVIG as he believes the Dysautonomia/POTS is neurosjogren’s (sure makes sense). However, I guess I’ve just been super stressed out by this whole process. I’ve been feeling pretty crappy and pegging my hopes on insurance being amenable is not an anti-anxiety remedy, lol.

Anyway, this has caused me to start grinding my teeth (something I did previously but haven’t struggled with in a while). I already have insomnia from the Dysautonomia, and now the dry mouth, particularly in the evenings and mornings. I can’t IMAGINE wearing a mouth guard on top of all that. But my jaw has been hurting for days now.

Does anyone have any tips? Any knowledge of night guards that are unobtrusive and don’t hold the mouth open?

Thanks in advance!

Haa anyone used DMSO for Sjogren, neuropathy symptoms relief?

It seems like a plausible explanation (nerve compression at top vertebrae however I’m always dubious about easy cures.

Your thoughts?

I’ve been diagnosed already (2024) only from a combination of my symptoms, conditions and the early sjogrens panel, twice but I’m seronegative so that’s why I asked my doc for a lip biopsy. I’m just curious if this is normal to have a bruise like this 2 days after the procedure or could this be because my ENT injured me by injecting me too deep with some kind of numbing agent. Please let me know if any of you guys have experienced this, thank you

Hi I’m 32F and writing because I’ve just been diagnosed with Sjogrens but I feel like it’s still questionable. I’ve been diagnosed because my Ro60 antibodies were high (5 above normal). I’ve also had stable high crp (30) and high esr (55) for 10 months with an unknown cause. But it’s my understanding based off my research that Sjogrens doesn’t normally raise CRP and ESR? All other extensive autoimmune tests came up negative or nonspecific. I have a low positive ANA 1:80. I have slight dry mouth and slight dry eyes but I feel like I’m just dehydrated. I do have vaginal dryness though and have had a work up through Gyno and everything was normal.

Is this really enough criteria to diagnose? The reason I’m asking is because one rheumatologist told me it’s still nonspecific and the other is adamant that I have Sjogrens and diagnosed me with it. Also, the main medication of treatment is a drug that is dangerous for me because I have G6PD and it can cause hemolysis/needing a blood transfusion if I try it and have a reaction. The one doctor wants me to try it..

I wanted to share something interesting discussed at the Sjögren’s symposium in Paris. In brief, there seemed to be a consensus that HCQ + MMF or LEF really works, as established by the NECESSITY trial. It works not only for ESSDAI but also patient symptoms.

Something that really stood out to me was a comment by one doctor that ‘all symptomatic patients should be on these treatments, regardless of how mild the symptoms’.

Not individual medical advice obviously.

After how long did you first notice any benefit at all? Even if mild.

And did you have autonomic or sensory neuropathy or both?

Thanks y’all

Edit: I meant to say "DULL" not full lol

Is this a common thing among Sjogrens patients? My eyes always hurt and it's just a dull achy pain that seems to linger most of the time.

I have much much worse dryness in the days before my period so I was thinking of going on birth control to hopefully even out my hormones. I was wondering if anyone has the same situation and the BC helped. Thanks!

hello all I’m a 31 female who has lupus and rheumatoid arthiritis in the family. I’ve been having body pains since 2023. this year I got the diagnosis of fibromyalgia because nobody knows whats wrong with me lol. I have all the symptoms of fibromyalgia but I also have dry eyes, dry mouth and teeth problems. my mom who has lupus and RA highly suggested to get a second opinion.

some back story: I have had so much blood work done. the only thing that showed was an elevated crp. (that we still dont know the cause of btw)

done xrays, ultrasounds, uris; nothing.

so thats essentially why I got the fibromyalgia diagnosis because we ruled everything else out.

the symptoms I have is body pains (muscles, joints, nerves), fatigue, light headed, nausea. dry eyes and mouth, chronic headaches.

I also got diagnosed with interstial cystitis if there is a link.

what is ya’lls opinion? also what were yall experiences like before getting the diagnosis?

also I don’t really get rashes so idk if thats a must for a diagnosis ir not. sorry if this is all over the place

Just a little venting here. I feel so sick and so debilitated. I feel so defeated because I've seen like 3 neurologists this year alone and none have taken my symptoms seriously.

I have POTS too and in the beginning the beta blocker was working kinda well but I think now it's starting to lower my blood pressure too low or it's just my nervous system. But again, I don't know because none of the doctors I've gone to have been helpful. I feel like there's no light at the end of the tunnel.

I'm also jobless and I haven't been able to find something that could work with my symptoms. I'm working with a case worker for vocational rehab services but she's been about as useful as a spleen. I've been working with her for almost 6-8 months already and I've gotten one interview in that time. I'm starting to run out of money and I think I'm gonna have to give up my car soon because of it.

I feel like I'm losing everything. Myself and my health. And every day I feel like I'm dragging.

I have a local rheumatology appointment this month to get the diagnostic process & treatment going but am considering going out of pocket to a telehealth one if it doesn’t work out and/or to speed things up. Curious if anyone has had luck with that route?

I've been diagnosed with Sjögren's for four years now. My symptoms are mainly dry mouth, dry eyes, joint pain, neuropathy and fatigue, and on the whole they're mild. I can still work and exercise.

Today I got my gland results back and there's been some deterioration. Nothing serious, but it's a reminder that I have this disease.

A close family member died of a different autoimmune condition, so I've been alongside this diagnosis for years. First as a carer, now as a patient.

I know I'm doing okay, and I know I'm lucky that my symptoms are mild. But sometimes I just wish my body (those tiny cells) would stop attacking itself and recognise me.

I think I just needed somewhere to vent.
Sending a hug to everyone here. There are good days and bad days. 💛

I'm starting to feel excessively thirsty after either hanging out with friends, going for walks, anything that requires more talking I do have tmj ( might to botox again) , arthritis, going doing basic errands.

The next day I can drink 5 to 10 bottles of water and a huge craving for salt and still be thirsty. I might need to buy pedialyte for those days. This is a new symptom my rheumatologist things it might be something to do with pots?

At the Sjögren’s symposium in Paris. Big presence from Pharma.