Now that you know you have Sjogren’s, think all the way back. What’s the earliest symptom you remember that you now wonder may have been connected?
Not the symptom that finally led to your diagnosis. I mean the first one.
And how many years before your diagnosis did it start?

I have all the markers for sjogrens on paper- high titer, positive SSA it’s a 78. I do not have any physical symptoms, I have dry eyes but the doctor thinks that’s MGD and unrelated to sjogrens.

My September panel had SSA 78 positive, but Smith negative, dsDNA negative, normal C3/C4, negative cardiolipin antibodies, normal RF and normal inflammatory markers. Ro52 was positive in 2022 & Ro60 was negative this month.

Today, he told me that if I decide to get pregnant I would need to start Hydroxychloroquine 6 months before getting pregnant to prevent neonatal lupus / congenital heart block.

What has been your experience for those who have a positive SSA. I feel really defeated and scared, I was planning on getting pregnant at the end of this year but it seems we need to push to next year now.

Over the past month and a half (24f), I have experienced a bunch of symptoms that I believe may be Sjogrens related. This past summer I first noticed that my eyes would feel a little dry after waking up in the morning, which would go away quickly. At the end of August, I noticed a very faint pins and needles sensation in my hands that would come and go, which I just ignored.

In the middle of September, my eyes became suddenly more dry and uncomfortable, and I had a couple days of intense eye pain with tender eyelids. An optometrist prescribed me steroid eye drops which helped for a couple days, but then the following week my eyes somehow got more dry. My dry mouth also suddenly appeared over a couple of days and has been intense since, like I run out of saliva while talking. The back of my jaw also felt uncomfortable and swollen, which I think may be inflamed salivary glands. The neuropathy in my hands and feet became more intense and fluctuates between a very mild burning sensation and pins/needles. A couple times I have had muscle aches in my thighs, or a feeling like my legs are heavy after going on walks which I have never had problems with before. The joints in my fingers also feel a little stiff, and I now have a dry nose and dry skin. All of this has intensified my anxiety which probably is making things worse.

I have had basic blood work done and my ANA came back negative, but I was not tested for antibodies yet. I will be seeing a rheumatologist in the coming weeks as well as an ophthalmologist.

I am currently a second year medical student, and all of these symptoms have made it hard to focus and study. My eyes seem to keep getting worse, and I have a lot of anxiety about the tingling feelings and whether things are going to get better. I understand I do not have a diagnosis, but it seems impossible to try make all of these appointments, manage symptoms, and keep a positive outlook on school and my future when I am not sure how the symptoms will change. I also have read about the possibility of being seronegative and dealing with neuro symptoms.

My family and friends have not really taken me seriously, and my mental health has been struggling.

Any advice or words of encouragement are welcome. If you had an intense wave of symptoms that seemed to have gotten better or if you have managed Sjogrens while being in school or having a demanding career feel free to share your experiences.

Hello all!

I am not asking for a diagnosis with this post, but more of a general ask about other people's diagnostic journeys. While investigating other autoimmune concerns, my PCP ordered a broad panel for blood work. I tested positive on the Sjogrens SSA along with a low positive ANA titer.

My new rheumatologist tested my tear/saliva production and, while the numbers were below average, she said they were not clinically significant enough to be considered for Sjogrens. Regardless, she is still sending me to get a mouth/lip biopsy as I understand that is the most definitive way to diagnosis.

I do experience dry eyes and dry mouth. My dentist has also noted evidence of dry mouth. Symptoms have been mild enough compared to everything else going on that I haven't pursued it until this blood work.

Have y'all experienced anything similar to this - positive blood work but not clinically significant symptoms? Did you end up with a diagnosis of Sjogrens?

Thanks!

Like two months ago my eye doctor sold me some eye drops that he recommended. They were like $20 so I didn't think much of it and since the doctor recommended it I also didn't think much of it.

I've started to notice that they make my eyes feel worse some days. I've tried other eye drops that I've used that another eye doctor in another city I lived in recommended and when I used those my eyes felt relief immediately.

So, is it possible that not all eye drops are created equally and could be making my eye dry worse?

Note: I don't know the brand of this specific eye drop my current eye doctor gave me. But the other ones I normally use are Refresh PF.

In the past my lipase has been normal but today showed as low, a value of 8. Does anyone have low lipase and does this for sure mean Exocrine Pancreatic Insufficiency?

I started taking digestive enzyme (digest gold) 5 months ago due to comments on this group that recommended it to help with digestion. I do get some discomfort on upper left abdomen at times. But alt, ast, ggt, alp all normal.

I will be seeing my doctor in the week for further testing or feedback, but just wanted to ask if anyone had similar experience. And what testing confirmed it for you?

In the last week or so, my symptoms have gotten worse. Xiidra had been doing a good job of managing my eye dryness but I’ve started having to supplement with OTC drops again. Then my knees started hurting. They both feel stiff and swollen. Movement doesn’t seem to help. My primary care doctor order ESR and CRP levels but both came back normal (both were pretty low actually). I don’t get it?? How are my inflammatory markers negative if my knees feel this bad and my eyes are worse? Has this happened to other folks?