I have tried EVERYTHING!! -hydration -exfoliation -humidifiers -lotions -oils -cool home -vitamins -etc., etc., etc….. Still I have “snow flake” skin!🤦🏻‍♀️ Anyone have any secrets?

Just to start: I've had a blood test for Sjogrens and it's been negative. I have a Fibro diagnosis, Hx of migraines, have a positive ANA, hx of Lyme. The reason I've been tested for Sjogrens in the past is I have chronically dry eyes and mouth--if I don't have a sip of water and it's been over an hour my mouth becomes completely dry and cottony. It's been forever and other causes have been ruled out. I used to be able to wear contact lenses until about 12 years ago--my eyes became too dry and they would pop out. Was sent to eye doc who also suspected Sjogrens. Now I've had what I thought was a 'mystery virus' for 4 weeks /or a terrible 'fibro flare'...but I've been running a low grade temp that that's not typical for Fibro. I'm having all over body aches, feel short of breath, my eyes feel super ssndpapery and my skin feels prickly. very light sensitive and sound sensitive. Routine blood work looks normal....but haven't looked at inflammatory markers etc., Does this sound within the realm of Sjogren's at all? and if so, what test is available other than blood serum? TIA!

hi! i’ve been hospitalized over 15 times this year and finally diagnosed with sjogrens in August. Started on methotrexate 25mg/mL 0.3mL weekly now up to 0.3mL twice a week. I’ve been on various courses of IV steroids and oral steroids as well. I’ve been on cevimeline for about 8 weeks as well. i don’t notice a different and actually feel like my condition keeps on deteriorating at the most random times.

I was started on Orencia IV today and wanted to know if anyone had luck with it or has advice.

I also wanted to know if anyone gets a rash on their face prior to flares. my cheeks and nose get this red flush that’s hot always when my flare starts and within hours it goes away.

Any advice or comments are greatly appreciated as this disease has put me through hell and back

My rheumatologist prescribed 200mg a day for me. This is the first medication I’ve been prescribed for my sjogrens. I’ve only had one flare and that was a couple months ago. My mouth was so dry for a few weeks that I didn’t think I could go on living life like that, but it cleared up. Maybe I have more symptoms but I’ve gotten used to them or associate them with just being out of shape? Has this medicine helped anyone?

Please don’t respond if you’ve had a terrible response. I suffer from very bad anxiety and will feel like I have every awful side effect mentioned even if it’s making me feel better. Thank you❤️

Edit:Thank you so much for all of your kind responses. Every one of them has been very helpful.

Is anybody on something they feel really helps with brain fog and neurosjogren’s?

I’ve tried LDN, but could not tolerate it.

Family member diagnosed 14 months ago is new to area and looking for medical resources. Any information and guidance appreciated.

Today I went to the dentist because I believed one of my fillings had cracked, because my tooth was hurting, and learned that my gums were extremely inflamed. I have been taking very good care of my teeth and haven't had cavities in a few years, but I do know that my mouth has been extremely dry. I have been using xylimelts at night to try to help my teeth and xylitol gum, using remineralizing toothpaste. I oil pull with coconut oil maybe once a week just to moisturize my mouth so it won't feel so pasty and dry.

The dentist could not offer me any suggestions to address preventing the inflammed gums besides brushing in circles, and flossing which I already do. She suggested massaging my gums. They hurt a LOT and my gums always bleed profusely when I go to the dentist.

Has anyone else dealt with specifically GUM inflammation when your teeth are fine?? Any suggestions on what helps with that? Has your dentist offered any good advice? I did some extra oil pulling after because my gums hurt so much after she poked and prodded at them.

I just need some other ideas on better gum health maintenance for people who have very dry mouth.

Hi everyone,

I’m really hoping someone here can help me make sense of my situation or share a similar experience. For months, I’ve been struggling with dry eyes, especially in the morning. It’s gotten to the point where I had to see an ophthalmologist in October, who suspects either Sjögren’s syndrome or ocular rosacea.

Here’s the thing: I was prescribed doxycycline to take for 6 weeks, then stop for 2 weeks, and repeat. During the treatment, my dry eyes improved significantly, but during the 2-week breaks, my symptoms came back with a vengeance. It’s frustrating, and I feel like I’m going in circles.

Here are my blood test results:

Anti-SSA/Ro antibodies (60kDa, 52kDa): >=240 U/mL

Anti-SSB/La antibodies: 7

I know that high anti-SSA antibodies are often associated with Sjögren’s disease, but I’ve also read that they can show up in other conditions. To make things even more confusing, my GP (who I saw when my symptoms returned during the doxycycline break) admitted she doesn’t know how to interpret the results because they’re so specific. She even suggested that the elevated anti-SSA antibodies might not necessarily mean Sjögren’s.

The ophthalmologist also told me that my eyelids are dry, and my tears evaporate quickly, which makes me wonder if this could just be linked to a tear film issue or ocular rosacea rather than an autoimmune disease.

I’m seeing the specialist again in January, but I feel so lost in the meantime. Has anyone here dealt with something similar? Could it really be Sjögren’s, or is it possible this is just ocular rosacea or something else entirely? I’d love to hear your thoughts or experiences.

Thanks in advance for any advice or insight you can share—it would mean a lot!

So forwarning, maybe don't read this prior to the procedure! I'm ultimately wanting to do this to know if it'll show anything for me (sero-negative) so don't panic yourself by reading me venting about directly after it <3

So.... ow. Holy fuck ow, idk if it's cuz I seem to metabolize lidocaine weird but my whole jaw on that side is throbby and in a tmj flare qwq The gland under my jaw also really hurts but at least heat is helping a bit (and making me salivate more, so ig bonus?). I'm assuming it's swollen partially from being extra-active lol.

I need to commiserate with people, I'm in a shitton of pain cuz the lidocaine seems to have worn off pretty quick and my whole jaw is tense. That side is also super swollen, end me now 🥲

I am concerned about taking plaquenil because I am extremely nearsighted ( prescription glasses -12) any else concerned?

I haven’t been diagnosed — 25 year old male but dry eyes and dry mouth are my only symptom and labs are negative — using Restasis eye drops and hoping it ends up just being coincidental dry eyes and dry mouth as opposed to a condition because I’ve had a litany of tests.

Regardless, I see tons of info in here and online and it’s hard to make out what’s right. It seems the conensus suggests you can life a normal life expectancy while managing symptoms — is that true, even if diagnosed young?

I’ve seen some other doom or gloom posts specifically where people are saying like “cancer and blindness are inevitable”, etc and I’m just wondering what the truth is. I know people are going to say just live your life but I want to know the truth as to whether or not realistically you should expect to live a normal life span, and as any issues arise, effectively manage them, even if you develop it young or as a male.

Thanks in advance, I have bad health anxiety so bare with that and again I don’t know if I have it, tend to think I don’t, but I do worry about this aspect living in the unknown as it relates to what’s going on and it would be nice to know this so that if ever does become my reality I have a basis/don’t panic(😂).

How does Pilocarpine work for you? Does it cause any side effects? Does it help with dry mouth or dry eyes?

Below is a poll to gather some statistics:

PS: If you answeer "It does not help and caused me other issues" , It would be great if you list what was your issues.

​

View Poll

Hey everyone, I’m a 24M and a couple of years ago I started having very random symptoms… it was around a time where I was going through a lot mentally. I have an autoimmune disorder (vitiligo), but I’m not sure if it’s one of the related autoimmune diseases to Sjorgen’s. Basically I’ve never had terrible dry eyes, but sometimes when I wake up in the morning I have blurry vision for a moment or two. I feel tired all the time (and brain fog / lack of concentration) even after a good 8-9 hours of sleep. Also started having random pains all over my body and GERD. My mouth isn’t so dry that I feel like it’s “sandy/grainy”, but it’s I feel like there’s something wrong with me. I’ve been tested for sleep apnea, with an in-lab and at home test from two diff hospitals and both results are negative. Also had bloodwork for all the regulars, no thyroid or diabetes either.

I feel like I’ve been having a rough time for the past 2 years and I’m desperately trying to find an answer for my problems so I can start treatment.

I understand that these symptoms can also present in someone with chronic anxiety/stress and I don’t mean to offend anyone here but how likely is it that I have SS? I went to a well known rheuma in my country yesterday and he ordered the blood tests. (RF, ANA, ENA, nRNP, SS-A, SS-B, Sm, RNP, Sc170 and J01). I have no idea what these are but he said let’s check just in case you have some autoimmune issue going on. So far the RF came back as negative (my result was 5) but the other results will be back in a week or so.

My understanding is that it’s very common for false negative results in SS, in case I get negative blood test results what sort of testing should I ask for next to definitely rule out SS?

Thanks for your support.

Sjoegrens with suspected secondary lupus and/or dysautonomic factor. Condition deteriorating. Major weight loss problem (16.2 bmi)… told to eat more (duh)… but limited diet bc of dysmotility, SIBO, pain wrecks appetite. Anyway- I ate my boring safe soup with a small bowl of cereal (all low FODMAP/SIBO friendly) and got super dizzy after. This is new for me. Got some kidney issue concerns too- doc on watch for worsening right flank pain. My body is always such a confusing mess of symptoms in every system: neuro, glandular, vascular, derma, gastro, muscular… crazy ER type headaches, Raynauds, you name it.

Winter just started and I am in so much pain. My hands and fingers are cracking open. They’re dry and chapped so bad! Has anyone used moisturizing gloves before? Also what’s the best moisturizer to use on hands that are already cracking open?

I have lupus and Sjogrens as a secondary autoimmune disorder but I feel like my Sjogrens symptoms are worse a lot of the time. I've managed to figure out what to do for the dry mouth (pilocarpine, gel, mouth wash, gum, and lots of water) but the UTI pain is hard to fix. I can take UTI meds like AZO which work temporarily but this pain is almost everyday and I don't want to keep taking it, because I'm not sure what the long term effects are. I've also got these gel inserts that basically lubricate and moisturize your vagina along with a beeswax salve, and they both usually work a little but right now they aren't doing anything to help, hence why I'm desperately posting here!

Also I haven't been able to talk to my rheumatologist about it because she is extremely hard to get ahold of. I was tested for a UTI at a walk in place and then at the ER again while I was there for a lupus flare, and both were negative. Could it be anything else? I'm actually seeing my OBGYN on the 18th so maybe it's something I should bring up to her?

Any and all advice is welcome! I am desperate. 😭

Edit: THANK YOU SO MUCH FOR ALL THE ADVICE ❤️❤️ I appreciate the feedback and suggestions so much. I've contacted my rheumatologist and got a urologist referral

Anyone else dealing with this? Or have any ideas of what’s going on here. Thank you!

Was told today to decrease my NSAID dosage from 2 per day to one, due to decreased GFR/4 points below normal. Has anyone else experienced this? I am wondering if it is a true NSAID link or just Sjogren’s related?

I have joint pain my knees and the NSAID really helps in the cold winters.

I know for a fact I didn’t bang my toe anywhere hard enough for it to be bruised out of nowhere. And I also know with banging it, it usually is a localised spot that turns really black after some time.

I’ve had a lot of foot pain and calf pain for some weeks I put it down to wearing sorta flat shoes. For a full week my toe was throbbing a lot and it’s subsided now 3/4 of the nail it is just bruised blue but not black like with acute trauma.

I’ve read that it can be a symptom of arthritis or raynaud’s but I don’t get cold hands and feet.

Has anyone else experienced this? Could it be something more serious like vasculitis or PAD?

Anyone else conspicuously never (or very rarely) get sick as a kid/young adult/adult before your diagnosis? I can count the times I caught a cold or flu or got an infected wound on one hand with fingers to spare, and even then, I'm reaching. I now view it as an unnoticed early indicator of a dysregulated, overactive immune system.

Hi All, just wanted an opinion. Still awaiting a diagnosis, but I have symtpons such as dry mouth on occasions, dry sinuses, always had cold feet, and normally when I get thi I have short ache pins in joints....they don't last long, a few mins and are gone. In my neck, back, elbows, hands, hips mainly. Thoughts?

In addition I always have dry skin in my face.

Hi all, I have two autoimmune conditions already - Behçet’s Vasculitis and Hashimotos, but am awaiting further seronegative work up for sjogrens. I was put on steroids recently after catching Covid and not being able to come out of a flare. This might be TMI, but the day after I stopped taking the steroids my vagina was SO dry and inflamed and I just don’t know what to believe is the Behcets and what could possibly be sjogrens. I just know I have NEVER seen my vagina that swollen! During the steroid withdrawal I also had typical symptoms of Behcets in my mouth, joint pain, plus extremely dry eyes (I have punctal plugs), dry mouth, extreme fatigue etc. Can Sjogrens also affect the vagina and cause it to swell from dryness and inflammation? I ended up using postpartum spray and A&D for relief!

I suffer from brain fog, acne, dry eyes, and various other dry symptoms and fatigue, and my doctor said that I strongly suspect Sjogren's syndrome.

But I was also told that there is a possibility of other autoimmune diseases.

In this case, are there any treatments that are somewhat common to autoimmune diseases, or treatments that are not widely known but have dramatic effects?

Personally, I can tolerate the dry symptoms, but the brain fog and chronic fatigue are very painful and unbearable.

I previously heard of a person whose fatigue was greatly reduced by Plaquenil. There also seem to be treatments such as JAK inhibitors and biologics.

Among these, what treatments do you think are effective for brain fog and chronic fatigue related to autoimmune disease? If you have any game-changing drugs or treatments, or methods that you are focusing on, please let me know. I am quite ignorant about autoimmune disease, so I apologize if I am saying something strange. Anyway, I really want to cure brain fog and chronic fatigue. Is there any good method... (LDN was ineffective in my case)

I'm 16, I've bee diagnosed around two years. Recently I've been getting worse back pain and leg pain, insomnia but due to my age I'm constantly dismissed and really need advice on anything I could do to help myself? I'm in England so healthcare is free but nobody is willing to do much with a 16 year old. I'm on Azathioprine and another tablet I can't quote spell but I'll try Hydroquoxine, I've been on methotrexate, prednisone but they have stopped them. I do sometimes have Rimituximab but I dont know what to do at the moment? Apologies for terrible spelling

I have teeth issues as well I’m dealing with but I am trying to figure out if this is my teeth causing this or the auto immune ? It’s making me feel wierd and my sinuses are terrible lately . I have throbbing on the left side and my eye hurts

Hi everyone 24M, 2 years ago I got COVID with neumonía and after that I started to have sjogren symptoms , I have been negative in all blood tests and lip biopsy with this result:

Microscopic description Histological sections show six duct-lobular units with preserved architecture. Only at the level of the excretory duct is slight fibrosis observed, without inflammatory infiltrates or signs of malignancy, nonspecific. Diagnosis Salivary gland, lower lip, biopsy: mild periductal fibrosis. See description

and a gammagrafy that showed this result;

Conclusion: Parotid glands without significant alterations. Submandibular glands with marked functional impairment.

My doctor says I cannot be diagnosed with Sjogren

Some months after I got that COVID we saw this after a forniture on the room I slept, I'm now starting to think mold toxicity may have been the thing joined with COVID, and this may have been transformed on a sjogren or autoinmune desease? I don't know I'm just trying to get an explanation on all this, I've always been so sportive , not any more, all my life healthy, not any more... Thanks for reading I wanna know some advice or tests u should do to see if mold made something on me ...

has anyone found out they were pregnant when they were diagnosed with sjogrens? i’m very much freaking out and would love any advice anyone can give me

I get the dry eye thing but why are my eyes so crusty all the time? Is it salt? I use Ocuwipes which cleans them up but hours later they are crusty again.

For the past several years I have had abnormal pap results showing LSIL but have been negative for HPV everytime they have tested. I asked my doctor if sjogrens could contribute to abnormal cells in a pap and she said she thought it was unlikely because I am 23 and on birth control containing estrogen. Anyone else have any experience with this?

The strong cortisone cream isn't working. Has anyone had luck clearing their skin with a course of prednisone? I don't see my new rheumatologist until February, but I have a regular doctor soon..thinking of asking.