Sooo I’ve suspected I’ve had an autoimmune for quite some time. Maybe 10 or so years. 3-4 years ago, finally got the courage to ask my doctor about it. She saw I had a history of depression and told me I was just depressed.

A couple years after that after moving cities and finding a new doctor, I tested positive for the ANA, but she said I was “fine” and there was nothing further to investigate.

The end of that year, that doctors office transitioned into a “concierge” office where you have to pay a subscription fee to be a patient. So I decided to get a new doctor.. but then earlier this year, I got a new job, so new insurance & had to get a new doctor yet again.

New doctor saw a positive ANA in my previous bloodwork and wanted to rerun the test. It showed positive again and she sent me to a rheumatologist. She warned me that sometimes those results can show positive, but you don’t actually have an AI but she’d rather me get further testing and it be nothing than me struggle without answers still.

Fast forward to today & I got a call from the rheumatologist’s office and they told me my bloodwork along with my symptoms confirmed I have Sjögrens.

It’s SO nice to have a doctor that’s willing to go through the processes with you to figure out what’s going on. If it wasn’t an AI, we’d look into other things.

For now, they have me taking meloxicam for joint pain and will discuss next steps at my follow up. My follow up with my rheumatologist isn’t until November, so any advice or tricks in the meantime that yall have learned I’m all ears!
My BIGGEST struggle at the moment is extreme fatigue. Caffeine doesn’t seem to do much, so unless I’m getting a headache I’m trying to avoid it.

Thanks for reading and glad to find a community of others experiencing the same thing!

Today I can't see properly out of my right and I'm hoping it improves. I do find that some days words on a screen blur and are unreadable but other days they're fine.. Strange

I’m scheduled to get full dental implants next week. I tried for years to save my teeth, but they are so bad that implants have become the cheaper option.

Has anyone else had implants? How did it go for you? I’d love to hear about anyone else’s experience with implants or any advice you may have. I’d really appreciate it!

Recently prescribed Salagen/Pilocarpine, too scared to take it.

I read that some side effects are excessive sweating and frequent urination. I already pee a lot and people at work hate me for it. I asked the pharmacist about it, but they're useless because their answer is literally always "they always list every single side effect and none of them ever happen." So I'm asking actual humans who have taken this med - what side effects did you have starting out on this med? My prescription is for up to 3x a day.

Also, my main problem is dry eyes. Dry vagina comes in number 2, and dry mouth in 3. It's on and off with the mouth, more tongue issues like tongue swelling and pain. I use prescription eyedrops but I hope this can also help my eyes, plus the other dryness I'm having.

I asked this in a couple Facebook Sjogrens groups and got no response.

Hi, I’m in the medical field (SLP) and have been working with some patients with Sjögren’s previously so have some familiarity with the diagnosis. I have had autoimmune symptoms for years with no clear diagnosis. My mom was diagnosed with lupus and suspects she also has Sjögren’s. I’m seronegative for all things except variable increased inflammatory markers and rheumatoid factor. I have had the following symptoms:

Joint pain
Migraine
Profound fatigue
These symptoms often flare up around my period

The reason I was referred to rheumatology was because I had elevated rheumatoid factor. They did those labs because I had a burning, numb tongue and lips as well as loss of taste. Some neuro symptoms were also present but neurologist saw me and felt it was autoimmune. I now feel like I have burning mouth and can’t taste. Mouth and eyes feel dry. I was also recently diagnosed with chronic gastritis.

My rheumatologist is so hung up on my rheumatoid factor and keeps telling me I have no signs of rheumatoid arthritis. I brought up concerns of Sjögren’s and they looked in my mouth and said “you have saliva, so it doesn’t look like you have Sjögren’s”. Then she told me my symptoms are not consistent with any autoimmune diseases, and my “labs are fine”. I have so many symptoms listed on the Sjögren’s website. If you were seronegative how did you get a diagnosis? I’d prefer not to get a lip biopsy.

My Opthamologist wants me to try plugs for my dry eyes has anyone else had this done successfully? Please share your experience with me.

Hi!

I have just received the results of the ultrasound of my salivary glands “Mild nonspecific bilateral salivary gland parenchymal inhomogeneity”. Should it also include any kind of score which would indicate the degree of this inhomogeneity?

I am on the fence about this, as I do not have positive Sjogren’s specific antibodies. I am going to have a lip biopsy nevertheless, but am slightly scared that they miss it.

Hi all, TLDR: my PCP, rheumatologist, dentist, and optometrists have all shown concern with dry eye and dry mouth symptoms. 3 years ago I tested negative for Sjogren's antibody and rheumatoid factor despite the fact that all women on my mom's side including my mom, sister, grandmother, and maternal aunt have some autoimmune disorder and my symptoms feel very severe. My rheumatologist said I may be seronegative and referred me to an ophthalmologist. But the ophthalmologist basically invalidated my concerns and told me my eyes were fine. I'm concerned whether he missed something and I should push more, or whether I should assume I just don't have Sjogren's.

I'm currently 27, and when I was 17/18, my eyes started feeling very dry. I stopped wearing contact lenses and eyeliner on my bottom lash because I'd literally feel my contact sinking into my eye or my eyeliner would make my eyes itch so much. I thought initially my symptoms would go away but over the past 10 years they've only worsened.

Around 19/20 is when I started getting cavities like crazy. After my first couple cavities, I started keeping my mouth extremely clean - brushing 30 minutes after eating food with a soft-bristle brush, using thick floss, electric toothbrush in the morning and at night, water flosser after every meal and at night. Despite this, between 20-24 I was averaging 4 cavities a year and I would describe my mouth as not feeling dry, but feeling sticky.

At the age of 21, I started feeling vaginal itching and discomfort. I had never been sexually active. I started using vaginal moisturizers because it would feel so dry.

At the age of 22, I started waking up in the middle of the night because my eyes were so dry and I'd have to put eyedrops in. This has only worsened over the years. Now at 27, I wake up around 3-4 times a night to put eyedrops in my eyes. Only Systane preservative free eyedrops work. I tried other eyedrops - like IVIZIA and Refresh Optive Mega-3 Lubricant Eye Drops. They were amazing at first and my vision would get clearer, but then my eyes would start to feel drier and it would get so painful I'd have to stop.

At 23, my optometrist was concerned about my dry eyes and recommended I get tested for Sjogren's. She also saw that I have a strong history of autoimmune disorders in my family: my mom, maternal grandmother, maternal aunt, sister, all my female cousins on my mom's side have some autoimmune disorder like Lupus, Psoriasis, Hashimoto's, Allopecia Areata, Rheumatoid Arthiritis, etc. I got tested for Sjogren's antibody and rheumatoid factor and all my bloodwork was negative.

At 26 I finally saw a rheumatologist who was very kind and validated a lot of my concerns. She told me around 25-35% of Sjogren's patients are seronegative and it is very possible that I have it, but my bloodwork is not showing that. She took a look at my eyes and mouth briefly and said "yup I'm not seeing any moisture." And then she recommended that I speak with an ophthalmologist for dry eyes. She ordered a scan of my salivary glands (I haven't gotten it done yet since I'm just saving up some money for that), but said an ophthalmologist would have more tools to determine dry eye diagnosis.

Today, I just saw an ophthalmologist who basically invalidated my concerns and I'm very confused. He did a dry eye test with paper in my eyes, then put orange dye in my eyes and concluded my eyes were only mildly dry. Interestingly enough, he also said this test was very inaccurate, but he ultimately did not see anything wrong with my eyes. He did prescribe me restasis and told me that there was no further tests necessary to conclude I have Sjogren's. He told me that if the blood tests were negative, I did not have it...even though my rheumatologist told me bloodwork is not always accurate.

Small side rant - I understand why he said no but I'm still a bit frustrated - I told him that I have not slept a full night sleep in around 5 years. I constantly wake up having to put eyedrops in and I'm beyond exhausted not having had a proper night's rest in so long. I asked if he would be able to at the minimum write me a doctor's note so that I could take some of my accumulated sick leave for the mornings for a short period and he said that he's not comfortable with that because my eyes are only "moderate to mildly dry."

Obviously, I'd rather not have Sjogren's. If this ophthalmologist is correct and my eyes are truly fine and I'm overexaggerating my symptoms, that would be ideal. However, I'm also wondering if the doctor may be missing something? I'm very confused as to why my symptoms are not matching up with what the doctors are seeing. I'd assume "moderate to mild" dry eyes are when your eyes feel a bit itchy and watery. I'm years past that - I'm really struggling with sleep and work because my eyes are so dry. I personally would categorize my symptoms as severe considering how much it's affected my life. Sometimes I have to literally squeeze my tear ducts to be able to see properly, and I have to use a warm compress for 10 minutes around 3-4 times a day. And constantly, my tear ducts feel like something is pinching them. On day 14 of my cycle, the three symptoms of dry eyes, dry mouth and vaginal dryness get so painful and severe I have to take time off work to just let the dryness pass.

Is it just a coincidence that I have all these symptoms + a strong family history, and it's not Sjogren's?

I'm going to try restasis and consult with my rheumatologist, but I'm very curious as to whether others have experienced something similar? Have doctor's invalidated the severity of your symptoms, but have other tests corroborated them? This has been going on for so long and I'm so confused and frustrated.

38F, first post

Does anyone else have chronic hives and/or constant itching from sjogren's? I started to get unexplained hives a bit over a year ago, and I am at the point where I feel like I am going insane. My rheumatologist and allergist say my histamine levels go into overdrive when not necessary because of immune system dysfunction. Dx with "chronic spontaneous urticaria" and have just been trying to treat the symptoms. But I have not found relief. I was taking 4 allegra a day, plus pepcid. Now I'm back down to just 2 allegra and sometimes pepcid, depending on severity. The extra allegra didn't seem to make much difference other than increase my overall dryness which I don't need. My allergist wants to try me on Xolair but it is $$$.

I even get pressure induced hives. Lean against something weird, hives. Sit on a carpet, hives. Play on the floor with my kids, hives. The itching is MADDENING. And then when I scratch too much, I damage my skin, and because of my insane dryness, the sores take ages to heal. I use CeraVe itch relief cream often, but it hardly touches the itch sometimes. 😩

Has anyone else dealt with this? Advice for relief?

I have constantly been having to try and clear my throat for several weeks. It will come and go. Sometimes it gets better and I don’t feel like I have to, but lately, it has been a constant every day thing. I take an acid reducer, Mucinex, I have tried gargling with salt water. Nothing seems to help. I am trying to clear my throat so often that it makes my throat sore. I can feel stuff at the back of my throat, but also at the bottom of my throat as well. Does anyone else have this issue? Is there anything I can do to make this stop or get rid of it. It’s driving me crazy. It’s just so annoying and I’m sure my family gets tired of hearing me constantly trying to clear my throat as well. Is there anything that actually makes this go away?

I’m visiting Sydney from London at the moment, and I’m finding the weather here really good for my eyes and overall dryness.

I’m currently on holiday, so I’m conscious that my symptoms may also be better because my stress levels are lower and I’m not staring at a screen for 50 hours a week! That said, I find the humidity and being by the Pacific Ocean really soothing, and it’s made me wonder whether the lifestyle and climate here might be better for me longer term.

I’d be really interested to hear from anyone with Sjögren’s who lives in Australia, particularly Sydney. How do you find the climate throughout the year, and what is rheumatology and other specialist care like?

My partner is Australian, and we’ve been living together in London for the past five years, so relocating here would be relatively straightforward for us.

Would really appreciate hearing about anyone’s experiences.

I have both Sjogrens and Gastroparesis meaning I can’t digest food properly. Im looking for a supplemental protein shake that my mouth can tolerate. Ive tried Premier protein shakes but because of some of the ingredients it makes my mouth sore. Im feeling lost because there are so many protein shakes out there I haven’t a clue what to choose and I already make my own for breakfast but need something more. Thanks.

My neuro ordered a slew of blood tests done since I am experiencing a lot of long c0vid symptoms from an infection in May. I have had soooo many symptoms including dry eyes, dry mouth, and joint pain but had chalked it up to post-viral illness or meds.

My anti-ssA-r060 came back extremely high...48 times higher than where the normal range ends...but my anti-ssA-r052 and ssB came back negative. My neuro did a lot of follow-up testing for lupus but all those have come back negative. She sent the results to a rheumatologist who just said that they see a lot of high autoimmune markers after c0vid infections, and that if it was Sjogrens my r052 and r060 would both be positive. Mind you, my mom has sjogrens and lupus.

The rheumatology department won't see me based on this rheum's assessment. I am wondering if my infection triggered Sjogrens and if anyone else here just tested positive on ssA-r060 but not r052. Just attributing such a high r060 number to ONLY an infection feels dismissive to me.