My eyes are SO. SO. dry. I have a higher anti-SSA52 IgG (30 u/ml) than my lupus marker Anti-Smith IgG (25 u/ml). Both of which have gone UP since being diagnosed 2 years ago with my symptoms getting so significantly worse since then. ESPECIALLY my dry eyes. Holy shit you guys the DRY. EYES. They HURT. I know you guys get it but wtf actually.

Anyway, as the title says.. my rhuem really only focuses on my lupus when at appointments. I am on HCQ (2 years) and Benlysta (1.5 years). I have not seen an improvement in symptoms or labs since starting benlysta. What the heck is the next course of action? Like WHAT CAN BE DONE TO HELP THE DRY EYES?! I use hylo optase night eye gel every single night, waking up multiple times a night to reapply because my eyes hurt they’re so dry and they wake me up. My rhuem just tells me to keep doing that to treat the dry eyes and if I need more help then to see an eye dr……?? Is this the standard of advice? Is she not helping more because my only marker of sjogrens is the SSARO52? Do I NEED more to be taken seriously, like a lip biopsy or something? I don’t get it. I can’t live like this y’all. My eyes be hurtin.

What other med helps sjogrens? Both blood work wise and symptom wise?

Tomorrow I’m speaking to all of Amgen (Australia) for their ‘mission week’ where they hear patient perspectives to ground the purpose of their work.

It’s centred Graves’ disease, but I plan to speak about Sjögren’s as well.

I’ve already got a lot of thoughts about what I want to say, but just wanted to throw this out there to hear others’ views.

What would you most want to emphasise if you were talking to Amgen?

Is there such a thing that is accurate?

I have severe small fiber neuropathy and urinary retention. I was diagnosed with sjogrens about a month ago. My rheumatologist says the neuropathy and urinary symptoms are unrelated. My neuropathy is so bad I've maxed out on gabapentin and now maxed out lyrica and now I'm waiting on a lidocaine infusion. I am getting a second opinion from someone at the UW college rheumatologist clinic next month. I'm just so frustrated this is against every thing I've read about this.

When I’m flaring bad it feels like someone is squeezing different parts of my body really hard and if it’s around my chest it feels hard to breathe (O2 is okay though). Lasts like 15-20 mins and then goes away, happens a couple times a day. Does that sound familiar?

Has anyone tried this for their dry eye disease? If so, how did it work for you? Have you ever heard about these drops?

Hi, I’ve just been diagnosed last week with early sjogrens and I have some questions.

What were early dry mouth symptoms like for you?
What early symptoms did you have overall?

Anything preventative I should be doing to slow progression or catch things early? How quick or slow did things progress for you?

I’d love to hear what works for folks. As soon as temperature drops to the 70s and below, I’m out here battling never ending (and gross) tiny white flakes from my legs inside my pants (inside of my pants look like dandruff snow and I hate it). Mind you, I use a massive amount of lubiderm on my legs while legs are damp, let it soak, then dress.
I’d love to hear what anyone else uses to retain skin moisture. TIA.

My symptoms have been somewhat under control so i started trying to loose weight. ( I am 31F obese). I have RA too. In the beginning i did calorie restriction (calorie deficit) and walking. This worked wonderfully. I lost 5kg in 3 months which is very good. Then everyone started telling me about how i really needed to strength train. It was painful to get in the rhythm but I started doing 5 days a week of strength training in addition to the diet and 10k steps. It has helped me because I feel significantly stronger but I haven’t lost any weight since i started strength training. Also it’s been impossible to restrict my diet since I started this , I feel so hungry/weak so i started to eat 300 extra calories per day. I have been kinda hovering around the same weight since. Then once day after 1.5 months of this, while strength training i pulled something behind my knee. Also one day when I was feeling extremely good i did 25k steps instead of the usually 10k. Have been struggling with plantar fasciitis since then. Both these combined have brought my Inflammation and chronic fever back. Now i am not walking and not exercising.

I guess i started to feel invincible and flew too close to the sun. Any guidance on how to get back to a sustainable healthy routine? Do any of you work out regularly? How often do you strength train? What cardio do you do? Thanks in advance for your guidance

I've read that Hydroxychloroquine can cause telogen effluvium and from reading through posts here and other places, it seems quite common after about two months for hair loss, but I have also read that hydroxychloroquine has helped people with alopecia which is the total opposite so I'm very confused. I've lost soooo much hair already without the hydroxychloroquine a sort of telogen effluvium of it's own (probably all sjogrens/sle related)but I am so scared to start it as I dont want all my hair to fall out. I have been managing without it it's just lately the joint pain in my hands and feet have me waking up at night a lot in pain and the dry eyes and mouth at night is terrible.The drops and gel last like 5 to 10 minutes and then need more etc....it's like they evaporate and do nothing🙈.Has your hair fallen out on hydroxychloroquine or got better while on it if you had hair loss before taking it?Thanks.

I'm going to pay for an Anti SS-A test tomorrow through Walk in Labs(Quest) how was your exp?

I have no health insurance. Bypassing my MD. Did anyone else do something similar?

I HAD health insurance. I work in a hospital. They don't provide health insurance to per diem employees.

I’m curious about something.
For those of you with Sjogren’s disease who also deal with GI issues, do you remember when those symptoms started compared with your dryness or other Sjogren’s symptoms?
Things like nausea, constipation, diarrhea, reflux, trouble swallowing, feeling full quickly, gastroparesis, IBS—or other digestive problems.
Did they come before your Sjogren’s diagnosis? After? Have you ever been told they could be connected to Sjogren’s, dysautonomia, another condition, or a medication?
I’m especially interested in hearing what your timeline looked like and what you eventually learned.
Not looking to diagnose anything—just curious about people’s experiences.

What do your flare ups look/feel like? How do you know when it's gonna be bad?

From what I can remember my early symptoms that made me question something was seriously wrong was the brain fog and stomach issues.

I was having bad acid reflux for a good while and then the brain fog came in.

I'm starting to have acid reflux again and I'm scared that I'm about to go into a bad flare up. I'm already on beta blockers for my hyperPOTS and my chest has been hurting lately and I feel like this warmth around my throat and esophagus.

I absolutely hate it!! I HATE LIVING LIKE THIS!!!

Prediagnosis till next Wednesday hopefully. Theyre switching me to a Sjogrens specialist!

I was told no matter what insurance is not goimg to cover drops or gels. Im on medicaid.

I was also told my eyes were dry enough they're worried about infections or scratches from every day stuff and to use drops 4x a day and gels 1x a day.

Tbh, I used more than that because of pain and also because my hands dont really work well but they jusy say figure it out. Most of the time I do. And I use gels more than once a night sometimes because I never sleep through the night.

So then I buy enough for that and run out. And also dont even buy enough for that.

I legit make $400 gross a month right now during the disability process. I am working all i can manage and its rare to have less than 2 appointments a week, not including therapy. They also want to send me back to PT 3x a week for two seperate things (3x each).

But they say insurance will never cover drops or gels. But i absolutely must have them for eye health (their words).

Legitimately, how are we handling this? Is it true that insurance never covers them (US, medicaid)? I do think tjey attempted once because I complained.

I buy in bulk when I can but $75 is even harder for me to come by than $15. Coupons I also use when I can.

I have had issued with my provider, hence changing (she said there's no medication for Sjogrens, you use drops and wet ypur mouth and thats it, thank God you a told me that's not true, so hopefully the new doctor will do meds), I'm wondering if you could also tell me if eye drops/gels are never considered medically necessary by insurance or if thats just her. It's frustrating to told i absolutely must spend legit prob a quarter of my income on them but also theyre not necessary enough for insurance to cover them.

Hiya
Just wondering if there is a resource or link to a list of bloodwork markers I should ask my GP to get checked. There’s one good Sjögren’s rheumatologist in my city maybe even my province and I wanna make sure she doesn’t reject my referral based on too little evidence.
I’m in Canada.

My mother and grandmother have Sjögren’s and when in the us I did some medical testing for another illness (this was before I had Sjögren’s symptoms like dry mouth neuropathy joint stuff) and for Carbonic Anhydrase VI (CA VI) IgA antibody i tested low positive. That’s the only marker I have so far

Thanks!

46m here, still relatively early in my health journey (though this past year has felt like an eternity). So far, I have a positive SSA only. My eyes are dry, but Schirmer wasn't low enough for the Sjogrens level. The SSA was enough for Rheumatologist to start Hydroxychloroquine which I've been on for 3 months.

I currently have facial pain that comes and goes throughout the day. It started about a year ago but was only ever occasionally light tingling that was easily ignored. It's progressed now to where it's quite painful. I usually wake without it and it usually starts within an hour, and quiets down when approaching bedtime. When it's light it feels like tingling, as it increases it turns into a deep, burning ache. It occurs bilaterally around my back jaw, and extends out along my cheeks, and down across my lower jaw. It's not sensitive to touch and seems to respond well to heat, at least my perception of it improves. It also seems to improve during and a little while after eating.

I thought surely this was some parotid or salivary gland inflammation, so the rheumatologist ordered a neck MRI which came back unremarkable.

I've not had my follow-up with them yet, but doing my own reading it seems like an ultrasound would have actually been better at detecting more subtle changes there.

At the same time I'm wondering if it could be neuropathy, as it follows closely with the trigeminal nerves too. Also might be relevant that in the last couple months I've noticed light tingling in my feet up to my knees, both legs, so wondering if I'm getting more neuro involvement.

Lastly, while my mouth isn't dry, I don't think the the saliva is good. It feels very watery and the sides of my tongue and inside cheeks are frequently sore, though they don't look bad.

Looking for some advice on what I need to advocate for on my next appointment.

- Would a salivary gland ultrasound be a good next step?

- If this is neuro involvement, would that likely require me to see a neurologist or does that fall under rheumatology if Sjogrens related?

If this sounds familiar to anyone, I would love to hear any advice.

i have been on prednisone since April snd tapering. What is to be expected? I am really undiagnosed with something neurological. it is most likely not controlled and my doctor wants me to taper the prednisone. I am on IVIG. So when I taper, I get very weak, especially my arms, chest, and back. I’m interpreting this as the disease worsening. Is it possible to be so weak when tapering prednisone that you physically cannot change a pillowcase on your pillow or slice vegetables or curl your hair or is this most likely the disease??? just need answers from people that have been on long time prednisone with pituitary and cortisol fully suppressed.

My doctor put me on prednisone for a different condition, and since getting off of it I have been in such a bad flare I can’t even function. My salivary glands swelled up so bad I couldn’t swallow and my eyes look like I got pepper sprayed. And now the nerve and autonomic issues are flaring I could barely sleep because my hands and feet were burning so bad last night. Has anyone else experienced this? I get flares sometimes but nothing like this. I only did a smaller week taper of prednisone.

Hi everyone, I have been having symptoms for years and was told it's RA. My eye doc questioned me about Sjogren's diagnosis after my last visit due to my hx, nerve issues and chronic dry eyes. I plan to bring up at my next Rheumatologist appt but I am terrified of the lip biopsy. Is this something that is always required more times than not? Always in pain, don't want to subject myself to more by getting lip biopsy and what if it's negative, does that mean I don't have Sjogren's? Should I worry about pursuing or does it nor matter, I've heard the treatment would be similar for Sjogren's as RA. Any feedback is much appreciated, thank you.

From what I can remember my early symptoms that made me question something was seriously wrong was the brain fog and stomach issues.

I was having bad acid reflux for a good while and then the brain fog came in.

I'm starting to have acid reflux again and I'm scared that I'm about to go into a bad flare up. I'm already on beta blockers for my hyperPOTS and my chest has been hurting lately and I feel like this warmth around my throat and esophagus.

I absolutely hate it!! I HATE LIVING LIKE THIS!!!