I just did a blood test for sjogren's over a month ago and my specialist never called me back... But on mychart my SSA is >0.4 and my SSB says high 9.8. He never said I have sjogren's and literally hasn't called me back.

I have all the symptoms. Huge swollen parotid glands for over 2 years, fatigue, dry eyes, dry mouth, some feeling of weakeness/joint pain.

I know you're all not doctors but what do you guys think of my test results compared to your readings?

Okay question. I have had this particular “rash” I don’t know if you would call it, come back every year, sometimes twice a year ever since my sophomore year of high school. First couple of years it started out with the redness and itching but with bumps on the fingers, but now it comes back as I’m older (23) and it’s dry, red, doesn’t itch as much, but it more cracks some and it hurts. I went to urgent care to get some labs and also they did some X-rays a few days ago because I’ve also had persistent joint pain for about three months now throughout my body, worst in my hands and left side of my hip. In the morning the pain is the worst, settles down through the day, but it still hurts during the day but just not quite as much as whenever I first wake up. And some mornings my fingers will get pretty swollen up as well. The X ray did come back clear for my hands, but the doctor at urgent care said they she said there is a possibly of some arthritis but early on it does not show on an xray. So she said if my bloodwork comes back abnormal to have primary care refer me to a rheumatologist. I currently don’t have a primary care as I just moved states, but I am currently in the process of getting a PCP in case these labs come back abnormal so I can figure out what is going on. I had to do something because the pain I have been experiencing has been so out of the normal for me, I just know something is wrong because I’m so fatigued and this stuff is abnormal. But really my main question is, if my bloodwork comes back abnormal, do you think I should still seek out a referral to a rheumatologist? I just don’t know what to really do

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.

Doing alright? Tell us.

Please rate yourself on the teardrop scale!

View Poll

Im a male, 28, Last year I was tested for Sjogrens and the results came back negative for antibodies. I have this fear in the back of my head that the test didn’t fully rule it out. I developed dry eye disorder, GI issues and mouth issues (dryness, allergies, over production of saliva, geographic tongue, tonsil stones) issues all at the same time ( right after my first time getting covid) all of those issues have persisted for a year now.

Does anyone have severe swollen parotid glands/lymph nodes? I have for over 2 years. Looking for any remedies or suggestions to get them back to normal. I look like I have mumps. 41 Female. :(

My mother in law has recently been diagnosed with Sjögrens and the onset of symptoms have been really difficult to manage. I would like to get her a care package of sorts but don't really know what to put in it? What kind of things do people with Sjögrens find generally helpful? I already bought her a humidifier for her bedroom, and one for the main area she spends time in the house. I got her an electric heated blanket, and hand warmers for her arthritis... Is there anything else that would be helpful for her ? TIA!

Posting for my mom who can't currently see or use the computer. 67 years old. Recent diagnosis of Sjogren's (less than 5 years). Her disease presents only as dry eye that switched to recurrent uveitis bouts in both eyes lasting weeks at a time for 2 years now. Rheum put her on 20mg Humira 2x per month about 6+ months ago. Humira has done absolutely nothing to stop or prevent the uveitis flares. Zero health issues or other symptoms of auto-immunity lucky.

Seems the ophthalmologists just treat the eye (steroids) itself and do nothing for the auto-immune and seems the rheumatologist just gives Humira and hopes it works, which it doesn't. She is now in a new city and has a new rheumatologist apt coming up. Of course eye doc runs dozens of blood tests and all come back clean.

How to get the immune system to stop attacking the eyes? Is there a better drug choice? Thanks for any input?

Location is SW Florida if anyone has a great rheumatologist who can address chronic uveitis that won't budge with Humira.

Thanks for reading and any input.

My wife suffering dry mouth past 5 months following a bad case of sinusitis, had a follow up with a leading oral pathologist who after examination said he didn’t feel a biopsy was needed after all the auto immune anti bodies came up negative in her blood and he said those were conclusive & she might have contracted some viral infection that’s taking time to heal. This appointment was after he first saw her in October when he noticed low saliva from parotid gland and the blood tests were pending. at the recent follow up he said her mouth looked normal with enough saliva and seeing how well she reacted to salagen biopsy was not warranted.

He said if there were any signs in the blood panel tests he would have done the biopsy. my wife’s condition did get a bit better over the months as in eyes aren’t as dry as when it first started that caused vision issues. Her dry mouth is manageable during the day but gets worse at night. Dry enough she gets up and applies ointments & sprays. She was also given salagen to help with the saliva but she ends up over drooling in her sleep, and then dry again for the rest of the night. She keeps obsessing over how dry her inner checks are and also gums. She’s gotten to a point where she is now on anti depressants because of this and the constant looming fear that she might have sjogrens and is being misdiagnosed for some viral infection of her salivary glands. She still gets the occasional lesions & patches in her mouth

we just don’t know where we go from here with getting proper diagnosis

I know it's so hard for someone who doesn't have fatigue so bad that they can't comprehend what it feels like when you don't have the life force in your body to lift your arms much less make a meal or clean the house. So I end up sending this screenshot to my family at least once a week

My ANA was a bit elevated and my doctor thinks it might be Sjogrens so she sending me to a rheumatologist for further testing. I'm really worried, I'm only 19 and i want to live a long enough life. What makes it worse is that I have Generalized Anxiety Disorder. I don't want to die

1. thank you all for your responses on my last post. It really helped me level out and feel less like I was crazy.

2. I read some of the previous posts and I see that a lot of people with our disease also suffer from POTS or Dysautonomia but I just want to compare how it feels…

So I’ve been dizzy/light headed for quite a while now and I brought it up to my rheum and at first he said it could be from the prednisone, so I stopped taking it because it was also making my anxiety way worse and I was turning into a monster. The dizziness and lightheadedness doesn’t go away.

It feels like my head is heavy sometimes. When I bend over, sometimes it feels like my body is just going limp and then jerking back awake in a millisecond. Sort of akin to when you’re falling asleep and then twitch awake. A couple times it felt like I blacked out for a second. I can’t like move quickly or it will happen too.. is this similar to someone else?

My rheum told me to follow up with my PCP so I just want to go in prepared.

Anyone else trial HCQ (Plaquenil) without a formal diagnosis?

I have systemic ai symptoms but negative antibodies (only slight uptick is 15 iu/ml anti-dSDNA which I’m told is still negative). Doc suggested trying HCQ to see if my symptoms improve but seems like a hefty drug to trial on a lark? CRP is 11; ESR normal (6).

Hello friends - Sjogrens, lupus, interstitial cystitis patient here. Diagnosed about 10 years ago. The dry eyes is by far one of the worst, most painful symptoms. And over the years, I’ve tried everything. I mean EVERYTHING. Autologous serum drops made from my own blood ($800), Restasis (burns like hell), all kinds of moisturizing drops, some kind of nasal spray (Tryvaya?) that’s supposed to produce tears, hot compresses, ice packs, you name it. Nothing works. Until now.

My doctor gave me a sample of these eye drops called Miebo. They’re kind of oily and prevent your tears from evaporating. They actually work! I can’t believe it!!! They make my eyes immediately feel better and the relief lasts! My eyes aren’t as dry and I can see better, be on the computer longer, and they’re not as red. I put them in about 3-4 times a day (did I mention they make your eyes feel good?) It’s amazing! I have Aetna and had to get them pre authorized. I don’t pay a thing. They come through a specialty pharmacy, through BlinkRx. You have to try them and let me know if they work for you. I truly hope they do. Good luck!!!!!

has anyone else experienced really bad stomach issues on plaquenil. I know it’s the main side effect so i’m sure some of you have experienced it. I’ve been on it for almost 2 weeks and i’m having stomach pain, nausea and diarrhea. I split the dose and take it with food everytime but nothing seems to help. I was prescribed 200mg twice a day 6 days a week. Do you guys think it would be okay to take pepto or tums to help? Also, does anyone know why my rheum prescribed it 6 days a week instead of 7? I have noticed an improvement with inflammation and pain so that’s a win 🎉

I couldn't tolerate plaquenil so I am still searching for a medication that works for me. In the meantime, I've been diagnosed with chronic telogen effluvium due to scalp inflammation by a dermatologist. My rheum confirmed that when the immune system is overactive, it causes hair shedding. Dermatologist got me on a treatment plan of ketoconazole shampoo and scalp steroid injections. I also take vitamins and give myself scalp massages. Unfortunately, even that hasn't stopped the hair loss. The only thing that helps is my own progesterone after ovulation. Interestingly, my hair sheds a lot less and the texture improves. Fish oil also helps a bit, but not much.

My hair has always been extremely beautiful, and with where I'm at right now, this has been one of the top most devastating symptoms for me as a newly diagnosed person. I know my hair may not ever be 100% what it was, but I can't go on shedding forever. I'm in a medication trial period now trying to find what works, but I'm sensitive to so many things that its difficult to find the right fit... I'm devastated by this hair loss thats been happening for 1.5 years now and its seriously impacting my mental health. What else can I do???

Hi everyone, I was recently diagnosed with Sjögren's disease, and I’m curious to hear your thoughts.

- How much do you think diet and a healthy lifestyle have impacted the progression of your condition? - Any practical lifestyle tips or suggestions that have helped you manage it?

Had a lip biopsy about 4-5 hours ago. Took about 2ish hours for the numbness to go away, but I still have a numb patch right in the middle of my lip (from the top of my lip and downwards on both the inside and outside). The procedure went smoothly as far as I could tell, and my doctor seemed very experienced and had done several biopsies before. He stitched me up and sent me on my way.

Is this numbness normal? If you've had a similar experience, how long did it take to go away?

I am a 42yo male. I was just diagnosed with Sjogrens and Fibromyalgia. My prescription has been ready since yesterday. I think I am in shock. I finally have an answer to why by body is failing me, but now I feel like hope has drained from me and I cant take a step forward.

Almost ten years ago I was very sick and not getting anywhere with regular doctors. I switched to a new primary and she sent me to a rhuematologist. After lots and lots of blood and urine tests that rheumatologist told me I had Sjogren's, Lupus, and Pernicious Anemia.

He then passed me off to a junior doctor in his practice and I've been seeing her ever since. And she hasn't helped much.

Long story short, over time, on plaquenil, the lupus related antibodies disappeared, Sjogren's and pernicious anemia remained. After a while she said she didn't think I had lupus, but only Sjogren's.

I'd go in and say I feel terrible, lots of fevers, skin rashes, mouth and gum problems, dry mouth, dry eyes, terrible muscles and joint pains, severe fatigue..... And she'd just smile and say things like "well fatigue isn't a symptom of sjogren's" or "your tests look pretty stable." A few times I had liver enzymes go up and she gave me steroids for that, but they made me gain weight like crazy and I was never able to lose it. And now, after all this time, and even though I hardly drank before, like two glasses of wine a week, I quit drinking completely. So now my liver is only barely elevated.

Because I feel like total poop I made an appointment with another rheumatologist, referal from a friend, and he is saying he's not sure I even have Sjogren's. He said it can't be confirmed without a lip biopsy. But when he listed all the risks from the biopsy, like numbness, potential paralysis of the lip and resulting speech problems, well, that doesn't sound good.

Then he said that even if I do the biopsy and am proved to have Sjogren's, he likely wouldn't do anything but plaquinel and steroids.... So, why?

So right now, as these are really the only two rheumatology practices in my area, I feel like my choices are 1) keep going to the doctor who is 100% sure I have Sjogren's but isn't helping me much, or 2) a different doctor who would do a biopsy, but would continue the same treatment.

Hello! I have been SUFFERING with what I am 99% sure is sjogrens as my mom also is diagnosed. My cotton mouth has been absolutely insufferable since Saturday. I have sores on my tongue and lips as well as the dry/cracked/leather looking tongue. I currently am working with a rheumatologist, but only have had 1 appt so far and have a follow up tomorrow. All my ANA results came back abnormal and my CRP increases every single time I get bloodwork (and it’s already high to begin with) I’ve only slept a total of 12 hours since Sunday because of my swollen tongue getting in the way of my breathing. The nurse at the rheumatologist who I talked to recommended hard candy, dry mouth spray and dry mouth wash all of which I have used to no relief. Have any of you experienced this with a swollen tongue like this linked to possible sjogrens? At first, I thought it could be an allergic reaction, so I did my epi pen as I have allergies but nothing budged. I’m literally just sitting here and just don’t know where to put my tongue in my mouth bc it’s so swollen, dry, and beaten up from the canker sores and my breathing is being impacted. I am so desperate for help and am praying that my doctor listens tomorrow and moves forward with more testing or at least something to help these symptoms!! I have been sick for the past year and it has impacted my life so much, this symptom pushed me over the edge.

some days, my eyes are susceptible to being in pain when open, even on cloudy days. But I also get this symptom where if I'm staring at a screen for too long, I feel dizzy and have to stop reading it. My vision is 20/20. I'm in the process of getting diagnosed with BVD, but I wonder if this is a symptom of my Sjogrens.

I’m curious who lives in a warm or tropical country? Where and does it bother you?

I live in Canada and have a love hate relationship with the seasons and the cold but cooler temperatures keep my flares at bay. I was in Hawaii this year and noticed I was very heat intolerant.

So wondering if you found the same? I ask because I’d like to leave the cold one day but don’t know where to move to.

My friend keeps bugging me to go see a functional doctor, which tries to uncover the " root cause" of your disease--like heavy metals, mold, etc. It's not really covered by insurance, anyone have experience with this type of doctor?

absolutely losing my mind the last two days with no relief from what feels like a needle being driven into my gum. numbing agents don’t help at all. anyone else have this problem?

Hey! Anyone here on Cymbalta for depression? How is your experience with it vs other psych meds you’ve tried? I’ve tried them all. Don’t think I gave Cymbalta enough time— I was much younger and don’t remember bad side effects, just wasn’t patient enough to see results. Being it has therapeutic pain properties, I’m reconsidering it again 8 years later. Thoughts? Thanks!

Has anyone had rituximab infusions and remember what you felt like after the first dose? I’m having my first infusion on Thursday and am supposed to drive down to my parents’ house 4 hours away to do an early faux Christmas with them on Saturday, so I was wondering what to expect in terms of energy level or other symptoms.

Any advice appreciated! Thank you! 🤗

I gotta ask, what's your constipation like? Because ever sonce my symptoms began my constipation has been crazy but the thing is, if been constipated in my life before but not like this. This is extremely dry (like my GI absorbs no fluid I drink whatsoever, and I pee constantly like my whole body really doesn't absorb it) But also it's like, I rarely ever even get the urge to poop anymore unless I take a laxative.

Is that how it is for y'all with it?

I have primary sjogrens and pretty dry eyes, especially in winter (from heat). Should I have cataract surgery? Will it make my symptoms worse?

I started Plaquenil on 11/14 so I have neen on 50mg 2x daily for a month.

Aside from dry everything, and the associated impact of that, my primary symptom was fatigue.

I can say I have seen improvement with no side effects.

I also have been on PPIs for quite sometime to try and resolve cough. It depletes your magnesium I have since learned. I started this magnesium supplement 3 months ago which resolved terrible brain fog and forgetfulness. Also my hair has stopped falling out.

Amazon:

2,253mg Per Serving, Providing 420mg Elemental Magnesium, L-Threonate, Bisglycinate Chelate, Malate, from Kappa Nutrition.

For the last few years I have been struggling with extreme dry eyes and keratitis. I have been backwards and forwards to eye clinic and rely on lubricating drops to get me through the day.

For the last few months I have felt so tired and immense brain fog. Also having mouth ulcers, dental issues and vaginal dryness.

I did visit my doctor in the summer and they ran some blood tests - nothing stood out but my “inflammatory markers” were slightly high.

I visited the eye clinic yesterday and was told there was a moderate suspicion of Sjogrens and I should be referred to rheumatology.

Part of me is relived something is finally being done but part of me is also sad it’s taken this long. Although reading the posts of this group suggest that’s the nature of the beast.

Any insight/experience would be greatly received!

Thank you (28F)