I've seen multiple ENTs and none of them are aware of sialendoscopy. Can someone recommend a doctor that can or has done this for them?

I have a persistent swelling in my face (cheeks, which no doctor seems to notice, but it’s definitely there), a swollen parotid gland that doesn’t go down even with corticosteroids (I’m on plaquenil now) , and an inability to fully open my mouth. This was my only symptoms, and I finally received a diagnosis after blood tests and a salivary gland biopsy.

PS: I’ve been unwell for almost a year, and I was diagnosed two months ago. The reason I’m writing this message is because I have a swollen lymph node in my neck, with occasional discomfort in my neck and ears (along with my jaw and cheeks, but that’s not new).

Has anyone else experienced what’s shown in this screenshot? (It’s an article on PubMed.) Should I be worried? I’ve had this lymph node for several months now, and I just scheduled an appointment with an oncologist. If nothing is found, is it possible to prevent the onset of cancer?

PS: I had two ultrasounds of the parotid glands and a CT scan before my diagnosis, which didn’t show any stones, and according to them, the glands were of normal size. The parotitis was only confirmed through the biopsy and the fact that it is a common symptom (and the only one I had back then) of Sjögren's (confirmed with the presence of antibodies).

Just got it done this afternoon, and I think I already accidentally undid the stitch. Sorry if this is graphic but did anyone have a fairly large hole left over after the biopsy, that was cauterized…? It doesn’t hurt to the touch on the inside of the lip/doesn’t bleed, & I’m on antibiotics already for something separate so I’m not super worried about infection, it just kinda feels like I bit my lip way too hard and there’s a hole left over that my tongue naturally wants to be on top of? Is this normal? I’ve felt the “hole” there since I left the office by my bf is fairly concerned (partially bc the skin is black from the cauterizing)

Please help 🥲 I really can’t make the time to go back to that doc this week & I’m worried now, ty!

I recently did blood tests with a rheumatologist and everything was in the normal range except my SSA at 6.5 and my ANA being positive. I've struggled for YEARS with chronic fatigue, brain fog, nausea, frequent headaches, joint aches and I noticed I am unable to grip things well. My body feels weak 99% of the time and I have always been diagnosed with depression and anxiety. My dad had lupus (allegedly) but he was in and out of my life then passed when I was 12 so I am not 100% sure on this. Simple things like opening a can with a can opener makes my finger joints sore and I am extremely tired after a trip to the grocery. Working 40 hours a week feels like too much on my body if I don't stay in bed for more than one day (on my days off). I have dry throat often and feel overall unwell more so than healthy, but not in a "flu like symptoms" way. I guess why im rambling is... I am not sure how to go about this. My rheumatologist sent me a message telling me I have Sjogrens, gave me two resources to learn about what it is, and said to follow up with him in 3 months. This makes me feel like maybe my diagnosis isn't that bad and I just have to tolerate it unless it escalates. And yet I struggle everyday to muster up energy to do simple tasks or even socialize.

I guess what I need is some sort of advice from people who live with it, as a way to know what to anticipate or how to vouch for myself with my doctors?

Hello! I have benn diagnosed with lupus in 2000. In 2017, after a lung remission, symptoms came back and I was diagnosed in addition, with Sjogren’s and antiphospholipid syndrome. After a year I got pleurisy and pericarditis. After that a long long time I had some type of stabbing pain when sneezing. I started to be afraid to sneeze. In time it got a little better, but I fell like it’s not the same as before. When it’s bad weather I sometimes get a pain in the lung and heart area. I wonder if this is something to be scared of. Can it get to something worse? Is it a sign of something worse?

In addition to that I have a persistent cough. A very productive cough that I have for several years now. I get it every morning and sometimes after some types of foods. Is this common? Cand it go away?

My mom was sick like 2 or 3 times in the past year and a half and her GP recommended X-ray just in case... They found some scarring on her lungs and suggested CT scan for possible ILD due to Sjogren's syndrome. The CT scan results are back and she is yet to meet her GP and her rheumatologist but we are worried about how bad this could be... I would appreciate any feedback from people with similar health problems. The results show cystic formations and multiple nodules (at least this is what I managed to understand from reading it), and it also says that they suspect possible pulmonary fibrosis. She doesnt really experience any shortness of breath or anything related to her lungs. The only symptom is dry cough. She also has been diagnosed with RA and Sjogren's in 2006. Google always shows me the worst possible scenarios and I am really worried right now....

anyone had to leave their job due to the disease? what was the job? what do you do now?

at what titre were you diagnosed? has it increased or stayed the same since then?

please share your experiences if so

My joint pain is everywhere... shoulders, neck, groin, knees, and hips. On week 2 of Plaquenil, I really hope I get some relief by Christmas! How long does it take usually?

Sometimes both hit me but I feel like my dry throat is worse

Does anyone experience anhedonia and or other weird cognitive issues with sjorgens?

We keep having graphic images uploaded to posts without the spoiler, despite the rules and a handful of complaints.

The only way to completely stop this is to stop everyone from adding any image at any time.

Do you prefer:

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anyone had/have a tongue that felt like it was burning? is it constant or does it come and go?

Seriously, wtf?

I'm getting so tired of scrolling through my feed and seeing random faces and mouths and body parts. We're not doctors, we can't help you! This is pointless and kinda gross (sorry, I know ya'll are just... actually I don't know what is going on).

I'm going to unsub but I've found this to be a really great community and would like an explanation... and to be able to come back someday if maybe there could be a rule or a flair or something so I could avoid this content.

I don't know where ya'll get that sjorgrens manifests as a rash, or irregular mouth... things or in the sclara of your eyes... I'm actually kinda shocked I haven't seen someone's... intimate areas... yet. This is too much already, I shouldn't wish that into existence. 😞

I'm tired ya'll.

Hiya, can anyone offer any advice/tips for digestive problems with sjogrens. I have had endoscopies before and both showed some gastritis (I’m taking omeprazole) but no matter what I do the food is constantly feeling stuck, acid reflux and pain! The dryness I know isn’t helping!

So what I mean is, what exact process actually goes wrong and causes it to activate? Does it begin in the GI? Or does it begin in the immune system? I'm asking for the true medical/scientific explanation here.

Or at least as much as scientists and doctors have figured out.

What is the "switch" that turns it on?

Anybody else find themselves soaking their bedsheets at night? It’s gotten worse for me since diagnosis.

recently started using it, & I noticed some of my teeth feel 'grainy'. anyone had this experience?

Hi, I’m recently diagnosed and new to this community. Yesterday I had the schimler eye test and both eyes are very dry. I scored a 3 in one eye and 8 in the other. My dr has prescribed some medication to start with and suggested down the road I try this lipiflow treatment which is a 10 minute process and costs about $500 out of pocket. I’m curious if anyone saw long term results to make it worth the ridiculous price. FYI, my dr suggested it but in no way was pushy about it. Thanks!

Does anyone with SS have an issue with one hand that gets really dry and red and cracks this is mostly on the ‘back hand’ side. It’s odd because my other hand is fairly normal but my right hand is like that as well as finger nails are brittle and possibly pitted. It basically looks like nail psoriasis on that hand. Idk if this is possibly SS related or something a little more simple like arthritis. I still need to get an early SS test done ( the rheum is not familiar with an early SS test but was willing to give me it, so I might need to change rheumatologist if I’m positive). I don’t have a dermatologist because of my insurance.

once a new doctor began asking me if i was experiencing raw eyes & nose, it seemed to check the boxes. i’m slated to PU scrip of… something with a P tomorrow.

So, I am working on finding a rheumatologist. Try to figure out what the heck is going on. I had to stop my MTX for 2 weeks because I needed my TDaP vaccine. Had a lid dermatitis flare. Coincidence?? 🤷‍♀️ Well I took my dose of MTX on Wed night and today was a work day-12 hour shift as a nurse. I can’t believe how well I felt!!!! My eyes are still crappy, but no joint pain. I was at the point that I thought I needed a knee replacement but the MTX has “fixed” literally all the problems i have had with tendinitis in almost every joint. It’s like psoriatic arthritis, but I don’t have psoriasis. It’s so bizarre. I am hoping they can figure out what I have. Kind of random, but thought I’d share. Hope it’s ok I hang around until a rheumatologist tells me definitively that I don’t have Sjogrens and a possible differential diagnosis. Cheers

I read recently that if a mother with sjogrens has a child, that the child could end up having problems with their heart.

I’m concerned because I’ve had sjogrens symptoms for years and I finally was just diagnosed in the spring of this year.

My physical therapist is the one who suggested that I get checked.

No one else ever thought I could have it even tho I told so many ppl my symptoms. My disease went untreated for a long time.

My daughter is a teenager (and autistic) and she has a lot of sharp chest pains and they come on suddenly where she stops what she’s doing and will just grab her chest and yell out and it scares me. She has seen drs and gotten ekgs and everything needed but the results all come out ok.

She gets some exercise and doesn’t eat too terrible. She’s slightly overweight and she’s 16. I never know what to believe on the internet so idk what to think or what to do. Her sister, my older daughter (I have 2 girls) she’s 19 and doesn’t have this problem.

My question is, has anyone heard of this or have any info about this or has anyone gone through this and was it serious? What was the outcome? How was it treated or can her issues be prevented from getting worse.

I wish I had been diagnosed sooner but I was in a bad situation. I was a single mom and I didn’t have very good insurance at the time. I also didn’t know back then that I needed to be my own advocate because ppl just don’t seem to care.

My therapist was the person who told me to do my own research and be pushy to get certain tests if I felt that something was wrong. She’s right! Medical professionals don’t know our bodies the way we do.

I’m just so worried that my daughter could have a lifetime of problems because I didn’t push harder to find out what was wrong with me.

I was depressed, I didn’t think anyone cared and I ended up being right about that😔

21F from UK Hi, I have my first rheumatologist appointment tomorrow.

What should I ask the rheumatologist? Anything I need to know? What should I expect, what happens in the first appointment?

My GP tested for ANA and it came back as negative.

Some of my symptoms: • Dry eyes and blepharitis • Dry scalp and skin • Dry nostrils, sinuses, and throat • Vaginal dryness • Dry mouth • Hair thinning • Cold hands and feet • Itchy skin after showering • Redness in legs after walking • Itchy rash on eyelid

The Swallowing Innovations Lab (Si-Lab) at the University of British Columbia (UBC) is seeking participants for one of our research studies (“A salivary bioscience approach to swallowing in Sjogren’s syndrome and healthy controls”). Our study is supervised by Dr. Stacey Skoretz (sskoretz@audiospeech.ubc.ca), Si-Lab Director, and has undergone ethics review. We are looking to understand how changes in saliva affect swallowing in individuals with and without Sjogren’s syndrome. 

Who can participate?

We are looking to recruit adults who are:

- Diagnosed with primary Sjogren’s syndrome

- 19 years of age or older

- Fluent in English (spoken and written)

- Independent with activities of daily living (e.g., personal hygiene)

What’s involved?

We will ask participants to visit Si-Lab to participate in assessments, including:

1)    Oral cavity assessment

2)    Tongue and lip strength measurement

3)    Saliva sample collection

4)    Questionnaire completion

5)    Swallowing test while eating and drinking

Your participation is entirely voluntary and would take approximately two hours.

What are the benefits of participating?

By participating in this study, you would help us to better understand, manage, and treat changes in saliva and swallowing that are associated with Sjogren’s syndrome. We hope that the information learned from this study can be used to benefit individuals with Sjogren’s syndrome.

To learn more or to participate in this study, please send an e-mail to vletawsk@student.ubc.ca.

Disclaimer: Please note that direct interaction with this social media post may publicly link you to the study.

My physiotherapist recommended the above. There is some limited discussion about its possible good effect on autoimmune diseases. Any one with any experience with this forvSjogrens and/or good results? They idea is to help drain the lymph system with a lighter than normal pressure etc.. Thanks for your help.

Even since I had my first flare and got diagnose with Sjogren's, I consistently have low blood pressure. I tried exercising and eating more but I continue to have low blood pressure. Anyone can relate?

Hello all. After doing very well for four months I now have bad symptoms again. My Dysautonomia is back and weakness to the point of a cane again. I’m already on hydroxy and IVIG every three weeks at max dose. The IVIG seemed to work perfectly and I was slowly recovering and my Dysautonomia was completely gone for a while. Now everything is back and my SSA has doubled since last tested (it is now 5x reference range). My Ana has doubled since last check (now 4x reference range). I keep hearing that ritaxan is better for neuro sjorgens and possible IVIG resistant CIDP. My rheumatologist just added cellcept and said ritaxan is too expensive. What should I do? I told her I don’t care about the price. I have yet to take the cellcept.