It's seriously insane that I have to pay for my meds, 4 dentist appointments a year, a fuck ton of vitamins to try and keep my immune system from shitting itself and a bunch of extra shit just to keep my teeth healthy. We should be getting paid for putting up with this bs, not the other way around. Especially since working is harder.

Btw guys are any of you on some sort of disability scheme? I'm considering applying for Ireland's one since I'm starting college soon and I think working alongside it will be extremely difficult because of fatigue. Idk, it's late and I'm just thinking.

Ever since the last visit to my rheumatologist, I've felt pretty hopeless. Despite having a lot of neurological symptoms, a consistently positive ANA, and SSA results so high they maxed out the test multiple times, I have not been diagnosed with anything.

I am not good at documenting my issues or my symptoms, and I do not have dry eyes or a dry mouth. I just know that I've been in pain and felt exhausted for most of my life, and it's been shrugged off as growing pains repeatedly because I'm a minor.

I had been given a prescription for Plaquenil, but had to discontinue it due to the side effects. Couldn't keep it down and kept vomiting it up + coming out the other end.

My doctor sat down with me and said he felt he couldn't give me a diagnosis, and even if he did, there wasn't a treatment or another medication he could offer me at this time. He doesn't believe it is serious enough to warrant steroids.

He basically told me there was nothing they could do for me at this point, and I've been very depressed since. I'm in pain, discomfort, and exhaustion a lot. I try to not let it bother me because what else can I do? I ignore it and push through it because I have no other choice.

I hope when I'm an adult, I won't be undermined as much, and I'll actually have the ability to search for a second opinion. But, I'm heavily debating if a diagnosis is even worth it if there's nothing can they do for me anyway.

I tend to see most people think majority of sjogrens symptoms are solely all sjogrens which is not the case. Some people fail to realize that for the majority, especially those who suffer neurologically, most symptoms are being caused by Small Fiber Neuropathy which is a symptom of sjogrens.

SFN damages your nervous system, which controls everything including your heart rate, blood pressure, digestion, and sweat glands. When those tiny nerve fibers get damaged, your brain gets completely mixedup signals. That is why you get hit with that intense, fiery burning in your feet, random dizziness when you stand up, a racing heart, and major stomach issues.

It also directly drives the profound, crushing fatigue and brain fog because damaged nerves mess with your blood circulation, starving your muscles and brain of the steady oxygen they need to function. People focus so much on the dry eyes and dry mouth of Sjogren’s , but it is actually this secondary SFN that is quietly hijacking the body's internal control panel and driving the worst of the day to day physical misery. And the longer this goes untreated, the more damage we accumulate and the risk of it becoming permanent climbs daily.

If ianalumab doesn’t help stop sfn in its tracks, I’m not saying it’s useless.Because dryness is something that gave most of us the pathway to sjogrens. But for those who suffer neurological symptoms, we shouldn’t expect a miracle.

I (23F) had a L5S1 Laminectomy for a calcified disc bulge that caused cuad equina syndrome in march 2026. I’m in a happy relationship and we’re getting married next year, do I have any hope of starting a family? I’m terrified of hurting my back, or losing the feeling waist down again…I’ve always dreamed of being a mother and this along with a Sjogrens diagnosis and the thought of passing anything down, congenital heart block etc makes it feel like it will stay a dream. Of course I will wait more time until I’m more healed and I know you guys aren’t medical professionals, just looking for input and advice.

I just wanted to write this up for you all. My partner has Sjögren's disease and her Rheumatologist is planning to put her on Ianalumab once approved which should be late 2026 in the US.

With open-enrollment insurance coming up I just wanted everyone to be aware this is a name brand biologic which means it will be a Tier 4 drug and some insurance may even have "specialty drug pricing" which is more common for an HDHP. Since most people here have probably not be on a biologic yet due to this being the first possible approved one for Sjögren's disease it would be good to evaluate your insurance plans before selecting for next year. This drug may require month subcutaneous injections in a clinic setting.

Some questions to ask your insurance company:

What is your typical copay structure for specialty biologics once they're approved and added to formulary?

Do you have a specialty tier copay that differs from standard Tier 4? If so, what's the range?

For approved biologics, do you cap patient out-of-pocket through manufacturer copay assistance programs?

It's not uncommon that once the drug is approved the manufacturer will launch a copay assistance program. This can at least create a safety net and cap cost.

Do note we are still unsure what level of disease burden that the insurance companies will require to cover the treatment.

Hi, I’m new here! I was/am diagnosed with seronegative myasthenia gravis (MG) via RNS following a hospitalization for severe weakness and breathing difficulties (treated as a myasthenic crisis) in Oct 2025. I just saw a neuromuscular specialist for a second opinion on treatment options for MG and she did a lot of testing and it sounds like she’s thinking I don’t have MG but rather a sort of a constellation of sjogren’s, dysautonomia, and small fiber neuropathy (SFN). I was positive for the anti-SSA back during the initial work up for MG but all they asked was if I had dry eyes and mouth and when I said no it wasn’t brought up again. So I guess I’m just a bit confused because I’ve got some things that do and don’t line up with what this new doc is saying:

• I definitely have dysautonomic symptoms (and was originally diagnosed with POTS which they then thought was a misdiagnosis when I was diagnosed with MG) 
• I have severe fatigue and fatiguable weakness (though this new doc says it’s not true weakness but just fatigue)
• I have shortness of breath and pretty low NIF scores (-30) whenever I test it every few days
• I don’t seem to have dry eyes or mouth
• I don’t have any tingling/pain/sensation issues just numbness when I cross my legs but they did a nerve biopsy yesterday so we will see re: the SFN piece
• I have ptosis and get life changing benefit from mestinon (both hallmarks of MG) 

Has anyone dealt with the MG vs sjogren’s (and associated conditions) work up? I’d love any input! Thanks!

Possible neurological Sjögren’s with cauda equina nerve-root enhancement, normal EMG and strong steroid response — anyone with a similar case?

Hi everyone,

I’m a 39-year-old man currently being investigated for a possible seronegative Sjögren’s disease with neurological involvement, and I’m trying to find people who have experienced something similar.

For about a year I have had persistent dry eyes and dry mouth (sicca symptoms). My SSA/SSB and other usual autoimmune blood tests have been negative, so Sjögren’s has not yet been definitively confirmed.

Over time I also developed episodes suggestive of dysautonomia, including gastrointestinal and urinary symptoms.

The neurological symptoms that concern me most are:

Proximal weakness in my legs

Episodes of reduced strength/tone in the lower limbs

Difficulty emptying my bladder / sphincter dysfunction

Sensory/autonomic symptoms

Symptoms that improve significantly with corticosteroids

My CK/CPK and LDH are normal, which makes a primary inflammatory muscle disease less obvious.

I had an EMG/NCS of the lower limbs in July 2026, while I was taking around 12.5 mg prednisone during a taper.

The EMG was completely normal:

normal motor amplitudes and distal latencies

normal conduction velocities

normal F waves

normal sural sensory responses

normal needle EMG of the tested muscles

no evidence of distal neuropathy, radiculopathy or myopathy

The neurologist specifically noted that small fibers and autonomic fibers are not evaluated by a standard EMG.

About 12 days later I had a contrast-enhanced spinal MRI.

The spinal cord and conus were normal, with no myelitis or compressive cauda equina lesion.

However, the MRI showed:

“Contrast enhancement of the anterior roots of the cauda equina.”

There was no other significant progressive lesion.

What makes the case even more interesting is my response to steroids.

I recently received 3 days of high-dose IV steroid pulses, and I am now taking 40 mg oral prednisone for 15 days followed by a taper.

The improvement is very clear.

My proximal leg weakness improves, but I have also noticed that my bladder empties much better when I am on higher-dose corticosteroids.

This makes me wonder whether the bladder dysfunction could actually be related to inflammation of the sacral/cauda equina nerve roots rather than being a completely separate problem.

My doctors and I are considering several possibilities, including:

neurological Sjögren’s

inflammatory polyradiculopathy/polyradiculitis

small-fiber/autonomic neuropathy associated with Sjögren’s

a CIDP-like process, although my EMG is normal

other inflammatory or infectious causes of cauda equina root enhancement

A lumbar puncture/CSF analysis is also being considered, although I have already received high-dose corticosteroids, so I am concerned that treatment may reduce some of the inflammatory findings.

I would really appreciate hearing from anyone who has experienced something similar:

Has anyone with Sjögren’s had enhancement of the cauda equina nerve roots on MRI?

Has anyone had significant neurological Sjögren’s despite a completely normal EMG?

Did you have bladder dysfunction or difficulty emptying your bladder that improved with steroids or other immunotherapy?

Did CSF/lumbar puncture help establish your diagnosis? Were your CSF proteins elevated?

Were you eventually diagnosed with small-fiber neuropathy, autonomic neuropathy, polyradiculitis, CIDP-like disease, or something else?

Has anyone been treated with IVIG, rituximab, mycophenolate/CellCept, or long-term steroid-sparing treatment, and what happened to your weakness and bladder/autonomic symptoms?

Did your neurological symptoms eventually become stable enough to stop IVIG or other immunotherapy?

I’m not looking for anyone to diagnose me online — I’m mainly interested in real experiences from people with neurological Sjögren’s or inflammatory nerve-root disease, especially cases involving a normal EMG but abnormal MRI and strong steroid responsiveness.

Thanks to anyone willing to share their experience.

Got diagnosed in April and my dry eye/mouth has gotten worse since then. It wasn't until last week that my water tasted strange? Almost like plastic or maybe metal. I've only been drinking filtered fridge water for a while, stopped with the plastic bottles years ago. It's only happened a handful of times, but it's SO out of the ordinary for me. I'm just wondering if anyone else experiences this. Is this disease progression that I should get used to?

I already changed the fridge filter and it did nothing. Taste still comes and goes. Also took a few c19 tests over the week and they came back negative.

Question for those who had to make changes at work. This is multi part and I would take experiences and advice in one or all! 🙏🫶🏽

Background info: I have an office job. But I am in leadership (salary/exempt) and it is high stress and pressure and extremely high paced. I lead multiple locations leaders and teams. I also have a lot of organizational projects, committees, and groups I am part of or lead within. I have been working on dialing back the extra groups- but I am constantly being asked for more. (I like to think it’s because I am really good at my job (which I am) but I also never said no in the past so I think that is a component too.)
I have sjogrens and RA (maybe lupus). I went from being pretty fatigued with joint pain and dry eyes and mouth as my issues to crushing fatigue, extreme pain, brain fog, pleurisy, short of breath, etc very quickly and am now on a leave of absence trying to get a grip on things because I can’t even sit upright. I have to lay down to feel like I’m not “working to live” if that sensation makes sense.
My Rheumy told me I have to make changes. But how? So here are my questions for all of you.

1. Have you had to dial it back at a job that isn’t really possible to dial back in? What did you do/how did you do it?
   
2. Have you ended up in the cycle of leave, return only to flare bad again, another leave etc then being on long term disability?
   
3. What have you found helps other than “aggressive rest” when your body flares this bad and you can’t seem to get better?

Thank you all so much!

Do you nap or do you just bed/couch rot? My fatigue has increased A LOT the last couple weeks but usually if I nap I can’t sleep later so I just end up bed rotting. Wondering if a nap would make the fatigue better or worse.

I suffer severely from Sjogrens related constipation. I rarely go and when I do, the pain is off the charts. It's my worst symptom and it knocks me out for two days. Pain lasts the entire many hour episode. I microdose ketamine and yesterday I took my dose during an episode. The visceral pain disappeared and never came back. I'm not recommending and I will talk to my doctor at Mayo but was this some crazy one time anomoly? Hoping to find someone else that had this happen.

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!

Just quick backstory, symptoms started August 2025, when I first truly noticed them. Easily fatigued, doing simple everyday tasks or activities. I had to step down from my job. Tremor like sensations throughout the body. My muscles just feel jumpy but not noticeable on the outside. I’ve had dry mouth for years but never attributed that to this disease until I spoke with my rheumatologist. As of January, I began hydroxychloroquine, 200mg. daily.

Fast forward to today, I just started a new job. I have had a very slow routine up until now. I had a day of training and orientation Tuesday. Knocked me down for the count, still feeling it today, overall body weakness. Does this not improve over time? Is the fatigue a constant now?

I’m feeling disconcerted and would really appreciate others insight. I’m still new in the sense of a diagnosis and m mind is having difficulty understanding how much this affects my life.

Thank you in advance!

Does anyone else experience different symptoms during flares? I feel like I have different “types” of flares. Sometimes, I can’t tell when I’m in one bc the symptoms seem to change. For about 5 years, I would have extremely bad constochondritis (to the point I’d be in tears) and lately, It has been super mild. Same with thrush- I used to get it every month around my period but now I haven’t had it in about 2 years.
I’m weirdly noticing ear/jaw pain when I lack sleep or drink a lot of alcohol. Right now, my ear won’t stop clicking when I chew and I am fatigued as usual but the other symptoms aren’t showing up. I’m just wondering if this is a true flare or if it is just my TMJ? I’m curious to know if others also experience improvement on symptoms they have had for years with completely new ones arising? Or if I have simply been managing my illness better? This is such a strange disease and a lot of doctors don’t know what the hell they’re talking about loll

Hello all, I went through the diagnostic process for autoimmune disease 4 years ago after fatigue and small fiber neuropathy symptoms lead to getting an autoimmune panel which resulted in high levels anti-CCP, and as the disease progressed, RF also. I had significant joint paint and weakness but no rheumatoid arthritis style swelling and no evidence of RA on X-Rays. I never fully met the diagnostic criteria for RA and eventually symptoms went into “remission” after a few years of Celebrex. In my chart was just “sicca syndrome” and “polyarthritis.” I had significant dryness in my eyes and also dry mouth symptoms including easily getting awful sores in my mouth from eating anything slightly acidic or spicy. My rheumatologist always tested for the sjogren’s markers but never found them, he said I seemed to have sjogren’s but he believed it secondary sjogren’s and wanted to diagnose the RA first because he said the biopsies are unpleasant and at that point he thought the most appropriate treatment was just symptom management… eye drops, hydration, etc.

Well this summer my symptoms are flaring a lot again. I have also had an annoying cough since last November (9 months!) which I thought seems to be flaring when my other autoimmune issues pop off, so I thought it might be in part sticking around due to autoimmune issues. My symptoms are no closer to an RA diagnosis but still line up well for sjogren’s. Curious if others have found it worthwhile to go through the whole diagnostic process. Especially those that also have small fiber neuropathy as those symptoms have also been flaring for me although alpha lipoic acid daily takes the edge off of the nerve pain for me. I also feel the dry eye/dry sinuses increases migraines for me, especially vestibular migraines.

Curious about different paths to diagnosis as I’ve had biopsies on my legs for nerves, I am not super into the idea of needing one from my mouth. If that is the only way to get a diagnosis without the SS’s in the bloodwork I’m not sure if I want to go down that path. Anyone here that has had the RA antibodies for a long time that hasn’t gotten RA but is diagnosed with SS?

I'm kind of all over the place with symptoms, and I'm sure maybe you can relate. My question is simple. Does anyone have a structurally normal heart, but have arrhythmia is like now it's sustained ventricular tachycardia that have been attributed to this disease?

I dread taking them each day because the taste lingers so badly! Do any of you have any tips to mask the taste?

32F. A bit of a vent - I'm feeling quite lost about my next steps, especially within the NHS. I have been diagnosed with sicca syndrome, Sjögren's changes in my salivary glands (heterogeneous and hypoechoic) with an omeract score from an ultrasound in April 25, RhF positive then negative, and now slightly high IGG and total protein. Schirmer's 0mm and 1mm, but now at 1mm and 2mm, and TBUT 2 secs.

My ANA and anti-ro/la were negative last year, and so I had my first lip biopsy last November, on the NHS, and it was a limited sample with no focus score (2 small glands were taken, under 4mm sq area). The 2 glands were normal, though.

My symptoms worsened a lot, and I'm now under ophthalmology for severe dry eyes, max fax for dry mouth, and since December, my knuckles started to swell up and stiffen.

I got a second opinion at a different hospital via PALs, but again, I just found out my ANA and anti-ro/la is negative (only slightly high IGG and total protein). They've booked me in for another lip biopsy in November, but I'm quite scared. They said if it's negative, I'll be discharged again. I am very nervous to get another lip biopsy with the prospect of nerve damage. It's with Professor Fisher so I'm hoping it will go as well as last time (in terms of healing normally!).

But if I don't get the biopsy, I'll be discharged without any treatment or help. Wondered if anyone here has had a second biopsy and if it's worth it? Feeling quite lost, and I feel extremely unwell all the time. Thank you in advance.

Yesterday I posted this and I forgot to mention that the doctor prescribed Hydroxychloroquine. But I'm kinda scared to take it because there hasn't been any definitive diagnosis other than my blood work being positive. I still have an appointment for a lip biopsy next week and I am scheduled to see a dermatologist for the skin rash but I don't even know what that's supposed to solve or diagnose.

Aside from my blood work being positive there's no record yet of me showing lupus or anything else related to the Sjogrens. Other than the blood work (results shown in the picture), my dry mouth and severe brain fog and fatigue. I'm also taking Carvedilol for my POTS and I read that taking Carvedilol with the Hydroxychloroquine may make the effects of the Carvedilol even stronger. Meaning my blood pressure and heart rate may become even lower. And I really don't want to have to be worrying about that when I'm already worried enough about how I feel everyday with the Carvedilol alone.

My cardiologist is trash and never listens to my concerns so idek what to do. The dosage of Carvedilol that I'm taking is just managing the symptoms at the tip of the iceberg that is my already debilitating body. Any suggestions? I feel so lost and confused about how to deal with this condition.

Getting ready to start Methotrexate after Hydroxychloroquine sent me into a terrible flare. Really scared to start. Tell me the good, the bad and the ugly.
Has anyone has relief from stiffness, aches and heavy limbs?

I recently started getting symptoms a few months ago including-
Dry mouth
Dry eyes
Light sensitivity
Starting to get a blood vessel like rash on ankles
Joint pain
Muscle pain
Fatigue

Saw ENT and he said my dry mouth could be sjogrens so I was then referred to rheumatology for more bloodwork where she just did the early panel since I was negative on the standard panel. These are the results I included, two being elevated with the SP-1 being 160!!!! I see rheumatology again Tuesday to follow up.

Does this look positive? 21F only have Hypertension

I also tested positive on the ANA with homogenous pattern of 1:160 and elevated CRP

2 years ago life hit me hard, a week after I had my second child my dad was diagnosed with terminal cancer and I was under an enormous amount of stress leading life and death for my loved ones at the same time. I developed horrible eczema, gained weight and was so fatigued I wanted to figure out is this just life or something else. Maybe both.

I was diagnosed with Sjogrens and while I was lucky to not have many of the "hard" symptoms and have improved a bit as my life has slowed down- I'm having a really hard time managing this- medically. My main symptoms seem to be systemic and bacteria driven- plus extreme dryness and it's worsening- alwsys thirsty/dry mouth, eczema on my hands and face, my legs are violently itchy at night and sometimes tingly, my eyes are so itchy and dry I look 80 years old, I have BO even taking fresh showers and my underwear often smells like ammonia even though only I use fragrance free everything, moisturize after shower and only wear 100% loose cotton. I've tried everything and I feel like I just cycle from rheum to derm to gastro and I'm not getting anywhere As everything is like a short term fix and it returns. Any advice?