I don’t have an official diagnosis but I’ve had 2 doctors tell me they suspect I have it from my blood work (ANA positive and speckled) and I have symptoms. I’m seeing a rheumatologist in a month and a half, and I just don’t want to wait that long to try pilocarpine or cevimeline. The dry mouth makes me really incredibly dangerously depressed and mints barely help. I’m hoping for a medical miracle with one of these medications and I just can’t wait a month and a half. Do you think the dentist would prescribe me them if they determine my dry mouth to be bad enough? I just want to be able to talk comfortably. I can’t have a conversation without discomfort and I have to talk all day because I’m a waitress.

Hi all! I have Hashimoto’s disease, and I know that autoimmune diseases come in multiples.

Recently, I’ve been having what I thought was a usual flare up, but I had new symptoms I didn’t recognize.

My hands hurt, my eyes hurt, itch and feel dry, and then I got a sudden rash all over my body (small red pimple) and when the rash was appearing, my mouth felt very dry.

Now, the rash and pain are gone, but my eyes and now my nose are SUPER dry.

Could this be Sjogrens??? Thank you 🙃

Hey, guys. I’m looking for some insight, if possible. It was recommended to me on a Scleroderma board that I consider reaching out on this board for other patient’s insights on their own experiences with seronegative Sjogren’s syndrome. I know we're all laymen and I am expressly not looking for a diagnosis or for whether or not I have Sjogren's; just anecdotal input based on your own experiences. It’s been suggested that I may have seronegative Sjogren’s, as opposed to scleroderma, since I don’t have the sort of skin changes or Raynaud’s that’s typical of scleroderma.

Here’s my history. Any insight would be enormously appreciated; I’ve been very sick for the last year, and I’ve ruled out anything that isn’t autoimmune.

I am Anti-centromere antibody positive, with a positive ANA (1:320 Centromere). I am negative for Sjogren’s antibodies and for Rheumatoid factor.

GI: extreme nausea (it was worse back in Jan/Feb, when I believe that whatever I had was in a flare; it’s since ebbed considerably so that I can leave the house and I’m not popping Zofran 24/7). Intermittent but total loss of appetite. On/off constipation or diarrhea; much less common than the nausea, and much less disruptive.

MUSCLE: Muscle pain/inflammation. Sore hands and feet. Swollen hands.

GENERAL: Fatigue. Dizziness. Weakness. Malaise, like a bad flu or a hangover.

CARDIAC: High HR (up to 150bpm) with dizziness and weakness. Palpitations that come and go.

SJOGREN’S-SPECIFIC: Dry mouth, no matter how much water I drink. Dry, itchy eyes. Gynecological dryness/coarseness, which is abnormal for me.

NEURO: Eye twitching that crops up only when my inflammation crops up (every 3-4 days, lasting for 3-4 days, then off again). Lip twitching (much less often, but very noticeable). Paresthesia in arms and back (from inflammation I'd imagine). Occassional bright flashes of light out of my left eye–the same eye with the twitch.

This is an especially important note, because it was what originally made me discount Sjogren’s and lean more into systemic sclerosis: in Feb ’24 I had a high CRP of 19/Sed rate of 20, which dropped to a CRP of 13 in April. What I’ve read (which with respect to Sjogren’s admittedly isn’t much) indicates that Sjogren’s does not typically cause high CRP and whole-body inflammation.

Infectious disease panel is clear. Abdominal CT/ultrasounds/chest X ray are clear. Gynecological/hormonal issues are clear. Labs are fine.

Has anyone here had anything remotely similar to this with Sjogren’s? The presence of the anticentromere antibody + my acute GI symptoms led my new rheumatologist, in our original consult, to jump to systemic sclerosis. How common is seronegative Sjogren's? Do other patients suffer such systemic, acute symptoms?

I can't tell you how much any insight, however small, is appreciated. I've been extremely sick; I'll be following up with my rheum later, but until then, insights from other patients are pretty invaluable. Thanks, guys.

I’ve been really struggling mentally with my ability to keep going and keep fighting every day. My self esteem is non existent, and I just can’t seem to cope. If anyone has some tips on how to have a better perspective and better relationship with myself despite my body failing and the looming misery of the rest of my life…. Please please share. I also can’t stop resenting people with healthy bodies.

I've been formally diagnosed with Sjogrens for almost 5 years. Over the past 2 weeks I've been dealing with a blocked salivary gland due to a salivary stone. Unfortunately it is the gland located under my tongue. Has anyone else dealt with this issue? If so, any advice on how to help work the stone out?

Hey everybody..

Recently been diagnosed with lupus, Sjogrens, MCAS and they’re searching for cancer now because my symptoms are so severe. I’m 25yoF and have spent the last four years dealing with this no matter how many doctors, medication, etc. I’m tired of feeling so alone and in a body that seems to just hate itself. I graduated college and am studying for law school and feel like I’m barely hanging on to life now when everyone else my age is moving on I.e. careers, children, marriage. Just venting but any advice or thoughts are helpful.

I’ve have Sjogren’s for a few years now (that I know of, as I understand you can have it for years before symptoms start getting bad) for me the extreme dry mouth was what made me seek medical care. Tests came back positive, which was no surprise, and I’ve had my dry eyes just getting worse and burning. I cannot actively cry anymore, only tear up a little, it’s so strange, and I’ve been told there’s nothing anyone can do it’s just all otc solutions. Eye drops help give some temporary relief. My dry mouth I can’t even use Biotene mouth spray or rinse because while it does help for a little bit it causes like white patches on my tongue that feel like burns and mess up my taste. That’s the best way I can describe it. Well, I’ve been having some GI issues lately, I’ve always suffered from GERD but more bloating, gas, stomach pain, etc. Do my doctor sent me to a GI who ran a couple tests for Celiac and the antibodies test came back positive. I think I’ll have to wait for a biopsy to get an actual diagnosis, which won’t be until the end of next month. Has anyone with Sjogren’s also been diagnosed with Celiac on here? If so, has changing your diet helped with the Sjogren’s symptoms?

Hi all. I have a long awaited rheum appointment this week, I have symptoms of Sjogrens and hoping for a patient doctor to answer lots of questions. What should I expect? What happens if my blood work doesn’t show Sjogrens? Can I still have it without blood work being in my favor?

Does anyone else get really dry eye with large sensitivity to light? How do you manage it?

Anyone tried Astepro? Wondering if causes dryness?

I’m curious if the lack of saliva (dry mouth) is causing this for you guys. If so, what’re you doing to fix this?

Does anyone hand kidney issues due to sjrogens B?

Everytime I eat,it’s not jst flare up symptoms like burning and joint pain but I notice my throat hurts when I swallow. It only happens after I eat.

Has anyone had anything similar for their results? I’ve been googling while I wait for the doctors office to get back to me and this seems like a whole lot of nothing. I’m scared I’m back to square one.

DIAGNOSIS(ES): Minimal chronic lymphadenitis, mostly normal but with a few plasma cells and with 1 focus of ~ 50 lymphocytes; nonspecific.

For those of you with either Raynauds or SFN how did your symptoms start? Did you suddenly develop full blown Raynauds one day or did it build up slowly?

I’ve been starting to notice some new cold intolerance and sensitivity in my hands, but no ‘classic’ signs of Raynauds just yet. I know SFN can cause weird temperature changes too.

Thanks!

I’ve been newly diagnosed with Sjogrens. I’m 36 F with dry mouth and constant fatigue as my symptoms. My rheumatologist prescribed me Hydroxychloroquine. I just started taking them but I know she said it works slowly but is there anything I can do in the meantime to help with the fatigue?

I will most likely be diagnosed with Sjogrens. For me it started with high liver and muscle enzymes that could not be explained with any other condition... Then severe leukopenia and dry mouth accompanied with swelling of my parotid glands. And the most striking symptom for me is that I have muscle wasting and severe weight loss with normal appetite and basically I eat whatever I want, but I am severely underweight?

I had the ANA panel which showed elevated antibodies that refer to Sjogrens. Now I have to do the dry eye testing and maybe a lip biopsy as well in order to get the official diagnosis. Lupus and other autoimmune conditions have been ruled out and my doctor told me it is most likely (like 99,9%) probability of Sjogrens.

Sorry for the lack of structure of my post but I am still really confused. Is there anyone wth Sjogrens that manifests this way (weight loss, muscle atrophy, lack of saliva and parotid swelling?)

Any experience would be appreciated

EDIT: They just did the Schirmers test, it came back borderline (borderline shortage of tears)

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2818491 C

Just posting for awareness.

The intent of this thread is to build community through shared experience.

Did Sjogrens make things hard again? This is your thread to rant all you like about how this shit is hard.

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Can anyone tell me why the med reduced my joint pain significantly? I could never talk to my rheumatologist about it and now I’ve moved and am (maybe without reason) worried a new doc will not want to rx it and the pain will come back. Severe debilitating pain in knees hips ankles and shoulders.

I’m just wanting to understand why or how it works, but I’m not seeking medical advice.

I’ve had Sjogrens for about eight years now with the usual symptoms, dry eyes, dry mouth, aches and pains taking hydroxychloroquine. For the past six weeks I’ve had a dry tickly cough every day and almost constant acid reflux. I’ve been eating Rennies antacid tablets before, during and after meals. Assume these are inked to the Sjogrens condition. Not due to see my rheumatologist again until September. Should I request an early appointment with him or just go to see my GP?

Will pilocarpine or cevimeline or anything help with vaginal dryness specifically getting more wet during sex. No matter how much foreplay happens no additional fluids get produced and I have to reapply lube frequently during sex and masturbation. I’m taking a probiotic and I drink a lot of water because of the dry mouth issue. I just don’t understand. My eyes still cry when sad, my mouth still salivates more when there’s food in it, but my vagina….can’t produce anything even when I’m doing stuff and very turned on. Is there any hope for me.

Not to sound completely ignorant. I just feel like I’m still in a fog and all of this is so new to me. I was diagnosed last week.

My main symptom was the extremely dry mouth and trouble swallowing, which has pretty much resolved itself, fatigue that makes me exhausted after minimal activity ( I could easily sleep all day), and the shortness of breath that causes panic attacks, which all of my doctors say is in my head. I just don’t want to waste this appointment and make sure I get all the right answers on how to take care of myself.

Really looking for an honest opinion. Thank you!

I get this weird electrifying pain in my jaw?? next to my ear? when I chew. It makes chewing unbearable at times. Like the gland next to my ear, if I had to guess. It feels like a sharp pain shooting through my jaw. This is the best way I can describe it, I’m hoping somebody knows what it is!

I'm a 24F, diagnosed in 2022 june. So, every week I try to go 5 days gym, but then something happens, sometimes I'm too tired after 3rd day, sometime I get some new symptoms or illness, like diarrhoea, migraine. Sometimes its all fatigue. It feels to be a failure. How do you guys manage?

Accidentally took my mid-day dose this morning with my AM dose. Google says I will live but the saliva is absolutely out of control