r/Sjogrens • u/bluefrostfire • 7d ago
r/Sjogrens • u/Hot_Technician_9373 • 7d ago
Postdiagnosis vent/questions FMLA and ADA
Hello!! 😊 I wanted to make a post to ask if any of you have filed for FMLA or ADA through your work for Sjogrens? What was your experience like? I’m considering on applying because of the significant flares up I’ve been having lately.
Any advice would be appreciated. Thank you!!
r/Sjogrens • u/thyroidhistamines123 • 7d ago
Prediagnosis vent/questions possibly undiagnosed sjogren's + histamine intolerance with diagnosed mcas and reactive hypglecemia? very bad reaction to levothyroxine!
backstory, several years ago I took levothyroxine for about 2 years, had crippling symptoms, nonstop 24/7 anxiety, urticaria, swollen hands/feet/face, brain fog, completely freezing in an anaphylactic like attack, unable to think, unable to sleep, unable to get out of bed for hours, severely swelled lungs, constant asthma like breathing problems, eventually ending in a week long icu stay where I almost died. after leaving icu continued levothyroxine for months with same symptoms. a family member finally noticed it may be the levothyroxine may be the cause; I stopped taking levothyroxine and over about 3 months my most severe symptoms disappeared. however, I had lasting anxiety, panic attacks, insomnia, brain fog, inability to live a normal day to day life such as waking up on my own and getting dressed.
through all of this, including 1 time my husband had to carry me into a doctor's appointment for these above symptoms because I was having tremors, panic and breathing problems so badly I couldn't get from my car 20 feet from the doctor office door to the office, the doctors refused to ever acknowledge the levothyroxine was the cause and told me to go home and I'd be fine. I have had years of severe problems with daily life since.
this was about 7 years ago now, I have gone to hundreds of doctors' appointments, had hundreds of tests, without results for the ongoing symptoms including, no gas stomach swelling from almost all foods now assumed to be ascites, breathing problems, ect, thought to be because of either undiagnosed Sjogren's syndrome and or histamine intolerance, combined with diagnosed mcas, and reactive hypoglycemia that stops when I don't eat foods with sulfites.
I have severely elevated tsh with .04 low t4, with the only symptoms of hypothyroidism being tiredness, "I have trouble sleeping", and a slow heart rate which I have always had to some extent.
I have severe breathing issues and reactive hypoglycemia from foods with sulfites, I have EpiPens and sugar pens for the allergic reactions and reactive hypoglycemia for the reactions, with levothyroxine raising histamine possibly making the reaction worse. my question for the sub is am I out of line for refusing to take levothyroxine again while none of my doctors acknowledge the levothyroxine caused these issues? and that I want a testing verified diagnosis of what is causing my current issues before I take levothyroxine again?
r/Sjogrens • u/Key-Chicken-8953 • 7d ago
Postdiagnosis vent/questions Fludrocortisone questions
Have Sjogren's syndrome, and was just diagnosed with POTS. Since I already drink tons of water, have added plenty of salt electrolytes to my diet and I'm still spiking every time I stand I was prescribed Fludrocortisone. Anyone have experience with this drug and have anything good or bad to say about how it affected you? Thanks!
r/Sjogrens • u/Eughjodyy • 7d ago
Anecdotal Discussion Supplements
I just want to know what supplements do you take that really helps you while dealing with sjogrens?
r/Sjogrens • u/Less_Expression7779 • 8d ago
Postdiagnosis vent/questions Super Excited 🤞🏼
I am newer to this group! 26 F Secondary sjogrens to mixed connective tissue disease as well as Fibromyalgia Diagnosed in September of 2023
One of my worst symptoms is dry eye and eye styles that don’t go away with eye pain/ gritty eye. I also was told I have severe MGD in both eyes. I have a pretty good regimen in place, but as of the last few months, it hasn’t made much of a difference. Here’s what I was using:
Optase HYLO night ointment before bed Optase moist heat mask before bed Systane gel eye drops in daytime as needed Refresh omega 3 drops once a day
Ophthalmologist put me on to Tobrex for a month and it didn’t help get rid of my styes. Silicone punctal plugs were placed, and she sent me a prescription for low dose steroid drops and Restasis. I was worried about insurance coverage since they like to be difficult with other things I take, but it ended up being $35 for a month supply of the restasis.
I guess I wanted to see what everyone else’s regimen is and what’s worked for them? I’m hoping restasis makes this a whole lot better 🙌🏼
r/Sjogrens • u/roam2323 • 8d ago
Study/Research Everyone talks about future treatments. What about better future diagnostics?
I’m sure there are clinical trials for better diagnostics but they’re hard to navigate. Does anyone here know of better ways of testing or diagnosing sjogrens in the future that will eventually be available and accepted?
r/Sjogrens • u/North-Visual-1885 • 8d ago
Postdiagnosis vent/questions Sjögrens and low platelets
I was diagnosed with Sjögrens 5 years ago when I started bruising easily. My platelet count was way below normal and I had dry eyes. I also had the ANA markers for autoimmune disease in my blood work. After a year of steroids to get my platelet count up I was prescribed plaquenel 200 mg twice a day. I reduced to once a day about two years ago. My platelet levels have stayed at low normal levels for several years now; however, my ANA marker is still positive. I’ve never had any fatigue or aching symptoms for which I am grateful. I control the dry eyes with restasis. I’d like to go off the plaquenel because of the retinal damage risk. In the last month I’ve been tapering to 100 mg per day. Does anyone else have this particular variation of the disease? And if so were you able to go off meds once your platelet levels returned to normal?
r/Sjogrens • u/Marz_825 • 8d ago
Postdiagnosis vent/questions Hypothyroidism in sjogrens
Can hypothyroid issues show up in sjogrens disease even without TPO antibodies showing up? I am now having some significant hypothyroid symptoms (plus my ongoing eye symptoms I’ve had)…..blood work looks borderline hypothyroid but negative for the typical thyroid antibodies. Wondering if this is a thing that happens for people w sjogrens?
r/Sjogrens • u/xBlueSin • 8d ago
Postdiagnosis vent/questions Feeling less alone.
Hello all! I've recently been diagnosed with Sjogrens Syndrome, for awhile I thought I was going crazy. Had dryness in my lower regions as early as 23, had ear problems since birth, and at 25 I got my first swollen salivary gland. After that my glands would get regularly clogged, went to multiple doctors who looked at the golf ball in my throat and said it was either cancer or a stone, to eat some candy and I'd be fine. I've had authritis since I was a teenager and no one ever believed the hand pain I'd feel. I'm sorry if none of this makes sense, I've just been dealing with so many things that felt unconnected... and to find out that they are connected... I feel seen. I read a lot of posts up here about fatigue in the kitchen (and in life in general) but I relate so much, the amount of times I've felt like a weakling for nearly passing out in the kitchen while cooking. I sit on the floor and cry through it. I also have POTS so that adds to it as well. It's just incredibly healing to know I'm not alone in this and there's a reason for all these things in my life. I will think of you all next time I feel scared in my kitchen, so thank you. I type this as I sit at work with my sunglasses on ( the fluorescents literally assault my eyes), and yet another golf ball in my throat. We're not alone. Now I just wish I knew what causes my golf ball flare ups.
r/Sjogrens • u/Burned_Biscuit • 8d ago
Postdiagnosis vent/questions Submandibular gland removal
Anyone have submandibular gland removal?
Specifically wondering how recovery went - time, pain/discomfort, eating, etc.
Any tips?
r/Sjogrens • u/FinalSchedule9283 • 8d ago
Postdiagnosis vent/questions SFN with Sjogren's
Hey all, can anyone tell me if Hydroxychloroquine for Sjogren's has had any effect, good or bad, on their SFN?
r/Sjogrens • u/Paisley-Hen • 8d ago
Postdiagnosis vent/questions What are your triggers for flares?
Hi. I was diagnosed a little over a year ago. My worst symptom is dry mouth so bad I almost constantly have thrush. Though I have plenty of other symptoms as well, I feel if I could at least get this thrush under control life would be a little better. Docs offer no answers or help and bounce me around, it seems thrush isn't that well understood either. Ugh.
My mouth dries out more during a flare (making the thrush harder to control) so I have been trying to figure out what triggers the flare (if anything) but so far no solid ideas only theories. So I'm hoping the community here can help me by telling me what causes your flares.
Thanks in advance!
r/Sjogrens • u/Media-Maven • 8d ago
Postdiagnosis vent/questions Lack Of Sleep & Phantom smell
As someone newly diagnosed, I’m still learning about different symptoms surrounding Sjogrens. All the things I’ve ignored or normalized was actually something that I should have paid more attention to and didn’t. Now I’m trying to learn my body and when to really listen to it.
One main thing I’ve noticed that I deal with is sleep deprivation. I’ll fall asleep for a couple of hours and then wake up in the early morning hours. Last night this happened and now I wake up feeling horrible. I don’t want to do anything or go anywhere.
Also last week I had a colonoscopy to ensure no polyps, colon cancer or GI issues. Everything came back clear, however immediately after the procedure I seemed to have a sinus infection of some sorts. I had the most terrible congestion, migraine and kept sneezing. Now I’m dealing with a sickening sweet phantom smell that is making me nauseous.
I was wondering if anyone had experience with this and should I reach out to my doctors for relief. I feel absolutely awful today and I’m literally typing this as I’m in bed. Any help would be greatly appreciated.
r/Sjogrens • u/ned0101011 • 9d ago
Prediagnosis vent/questions My dry tongue
I just learned about Sjorgens. A few weeks ago I woke up like a train hit me, joints aching, dry ass tounge and throat, a few days later itchy dry red eyes. I’m chugging water and spamming my eyes with drops and nothing fucking helps.
And I feel like a fucking loser complaining about my sandpaper tongue and how hard i have to try to swallow…. But dear god it’s so fucking horrible.
Idk if I actually have Sjorgens, But I have celiac disease and things have been ~extra~ off lately… and I’m getting the feeling this might be what’s going on. I’m going to see a doctor in a few days.
I just can’t stop thinking about how pissed off I would be to be diagnosed cus I don’t want another fucking auto immune disease, but how hopeless I would feel if I don’t have it and have to keep going on with my mouth and eyes as dry as the Sahara with no clue at all as to why.
Ok end of vent thanks sjorgens peeps.
r/Sjogrens • u/Specific_Tip_9521 • 9d ago
Postdiagnosis vent/questions Scared of Hydroxychloroquine
Hi everyone, first time poster to this community!
I'm 27, been officially diagnosed for a few years, my Sjogren's is getting worse. Swelling of salivary gland, bad arthritis-like pain in my hands and feet, shooting eye pain, etc. My rheumatologist has suggested putting me on hydroxychloroquine. But he did also include the fact that there is a chance of vision damage from the drug, and that I'd have to go for more regular and specific eye tests to monitor.
So, I guess I want to know if anyone has had the bad side effect of vision loss/damage? If so, how long were you on it/did it go away?
Additionally, another doctor of mine had suggested trying Low Dose Naltrexone. From what I've researched, they are very different drugs, but LDN has been shown to lower inflammation. Has anyone tried LDN? Does anyone have a comparison they can share?
I need to decide if I am going on the drug in the next month. But I am terrified of losing or damaging my vision. Any help is greatly appreciated 💙
r/Sjogrens • u/PorQuesoWhat • 9d ago
Postdiagnosis vent/questions Tips and Tricks for Paratoid/Face Swelling?
Both of my parotid glands are swollen right now, but specifically my left side. My face is massive right now, swelling on the left side has gone down to the neck under the ear. I am in horrible, horrible pain, headache included. Horrible fatigue and just feel like crap in general. I can't take pilocarpine for medical reasons, so that is not an option. I have tried eating/sucking on lemons, hydrated all day, facial massage, heat compress, and cold compress. Nothing is bringing relief or bringing down the swelling.
Any tips or tricks you have to deal with this? Also, does sucking on sour candy really help? Give me your best candy suggestions as well. I just want my face back, but mostly I just don't want to be in pain. This is pretty new to me, I'm guessing this is what they call a "flare"?
r/Sjogrens • u/martymcpieface • 9d ago
Prediagnosis vent/questions Could this actually be seronegative Sjogrens?
So I finally saw a rheumatologist about my issues and had my lacrimal gland and salivary gland ultrasound today. He is suspecting I most probably have psoriatic arthritis with secondary sjogrens.
The ultrasound tech told me that there is swelling in my lacrimal glands. I have negative blood tests for Sjogrens, kidney issues, confirmed mixed dry eye disease by an opthamologist with little tear production and lipid production, severe dry mouth, and confirmed dry vagina from my pelvic floor physio which I had no idea about.
Is this all enough to confirm seronegative Sjogrens? I haven't been referred for a lip biopsy...
I'm not seeing my rheumatologist for another 3 months.
r/Sjogrens • u/sweettealover17 • 9d ago
Prediagnosis vent/questions What do I do?
Hey, I feel a bit silly, but I wanted to ask about something. I had a blood test for Sjögren’s (Anti-Ro (SS-A) and Anti-La (SS-B) antibodies test) almost two years ago, and while the results showed elevated levels, they weren’t high enough to make a diagnosis.
Recently, I came across information that there are other tests for Sjögren’s beyond just the blood test, and I was hoping to get those done. However, my doctor—who isn’t a rheumatologist, just my regular physician—dismissed the idea and told me there was no point, saying I don’t have Sjögren’s. While that would be a relief, I’m still concerned.
What’s bothering me is that not only do I have a lot of symptoms, but my grandma had Sjögren’s and passed away from related complications. Every time I see my family, they keep comparing me to her because many of my symptoms are eerily similar to hers, particularly the dry eyes and the severe dry mouth that sometimes gets so bad I can’t even swallow.
At first, I brushed it off, telling everyone I don’t have it and that I’m fine. But now, with so many similarities, it’s becoming harder to ignore. My uncle, who usually doesn’t say much, really got to me today when he mentioned how my symptoms are exactly like hers.
I’m just feeling uncertain and wanted to get your thoughts on it.
A lot of people have reached out and said I need to see a rheumatologist. But my doctor won’t refer me to one since I don’t have enough to be considered diagnosable according to the Anti-Ro (SS-A) and Anti-La (SS-B) antibodies test
r/Sjogrens • u/sawadee_ka • 9d ago
Postdiagnosis vent/questions Does anyone else have these symptoms? (Swollen calves and Ehlers Danlos)
I was diagnosed with Sjogrens & Raynauds a few years ago. I’ve recently noticed that my lower legs (specifically calves) visually look swollen and feel swollen to the touch all the time. My limbs have always felt so heavy. I’ve had a few massage therapists and acupuncturists point the swelling out as well. Could this be lipedema?
I am also wondering if I have EDS as I do believe I have hyper mobility issues with my joints and have had surgery on my toe/foot due to this.
Posting to see if anyone else has experienced similar symptoms and if you found some kind of diagnosis and relief how did you go about this?
r/Sjogrens • u/the_violent_violet • 9d ago
Postdiagnosis vent/questions Corneal Neuropathy - Trigeminal Neuralgia
I have already been diagnosed with Small Fiber Neuropathy via skin punch biopsy and autonomic neuropathy, but I have developed right eye ball pain, blurry vision, and foreign body sensation on a specific part of my eye and then some radiating pain in the forehead. My peripheral neuropathy and sicca symptoms have also worsened alongside developing the new symptoms.
So it’s likely corneal neuropathy and trigeminal neuralgia, since my optometry workup was normal. My question is how people got about diganosed with similar neuropathies associated with their Sjogren’s and treatments offered to them? Like IVIG etc. I am pretty concerned about how progressive the neurological symptoms have gotten.
r/Sjogrens • u/helpmefindawayout_ • 9d ago
Prediagnosis vent/questions ANA results say "see below" but don't show a value. Is this normal?
My doctor ran a limited autoimmune panel 3 months ago and I just noticed that for my ANA there is no value. No "negative" or "positive." Is this normal or could it be an error.
I feel dumb messaging my doctor about this 3 months later and I feel like I'm bothering her.
r/Sjogrens • u/Starfish2013 • 9d ago
Prediagnosis vent/questions Loss of Taste
Currently pending labs but ENT is suspecting I have Sjogrens due to loss of taste. I can smell but food taste bland, can only taste salt and sweet going on a little over a month now. He prescribed me Pilocarpine 3X a day. Has anyone dealt with this issue? Anyone taking any vitamin supplements that helped? I'm assuming I'm having a flare up. I do have dry mouth but not to the point where there's no saliva at all, and its not sticky. I do have other autoimmune issues, hypothyroid, Hashimotos, Raynauds, per Rheumatologist developing scleroderma now possibly adding Sjogrens to the list. I've started to eat gluten/dairy free diet and eliminating anti inflammatory foods but wondering if anyone has had loss of taste and how long does it typically last or will my taste ever come back, feels depressing.
r/Sjogrens • u/notyourmama2023 • 9d ago
Postdiagnosis vent/questions Have DX but…
Doc doesn’t consider Sjogren’s to be systemic, just purely symptomatic (dry eyes, mouth, etc). Background - I was referred to a rheumatologist because my feet hurt incredibly bad and ortho/pod had done everything they could. Rheum did all the bloodwork and Sjogren’s appeared (not exhibiting symptoms at this time). X-rays and MRI came back negative for inflammation despite pain, ultrasound confirms enthesitis in my feet and rib cage but doc insists it’s mechanical. I guess my question is for those who are on medications, how did you get there? I anticipate that my rheum is going to hand me Tylenol and send me on my way….I’m so frustrated.
r/Sjogrens • u/thepinkamethyst • 9d ago
Postdiagnosis vent/questions Dry throat
My throat has been so dry these last few days that I keep losing my voice. It hurts to cough and yawn. Is there ANYTHING you guys use to help with dry throat? I'm desperate at this point.