r/Sjogrens

I suffered from severe dryness at the onset of my mono infection in January 2025. My mouth was so dry that drinking water, and especially electrolytes, felt like sand. My nose and ears were also dry. My lips would bleed, and the corners of my mouth were splitting and painful for weeks-months. My skin was so dry that the palms of my hands would bleed and after being in the shower for a few minutes, they looked like a sponge and I could easily remove the top layer of my skin. 4 months into my infection I was prescribed pilocarpine. My EBV infection was rather atypical, where my acute infection remained active for 10-11 months (high IgM/EA-D values with signs and symptoms).

Moisture gradually returned to my nose, ears, and skin. My mouth is still dry; however, electrolytes and water no longer feel like drinking sand and my mouth isn't as dry as before. I need to sip water often and I bring a water bottle with me everywhere. I've had a chronic sore throat, swollen lymph nodes, and fatigue in conjunction with the dry mouth for the last 16 months that I all still experience now. My ANA panel and Sjogren's panel are negative. My ENT and PCP want me to get a lip biopsy. I haven't seen a dentist since becoming so ill but in 5 weeks I'll be able to assess how this ordeal has impacted my dental health.

Did anyone's sjogren's trigger immediately during/following a mono infection? Is a formal diagnosis worth pursuing and what are the pros of that? I guess I'm still holding out hope that these symptoms will resolve with time and might just be a form of dysautonomia.

I would love to hear from those who were able to improve severe dysautonomic and digestive symptoms (gastroparesis, reflux) with biological treatments or immunoglobulins.

I hate going out to eat with people, or eating around anyone but my husband really. Food literally gets stuck between all of my teeth. I can go to the bathroom when I’m done, and use a dental pick, but can’t talk to anyone during the meal. It’s humiliating. Does anyone else have this problem? If so, have you found a way to deal with it?

Has anyone ever had this? My husband uses the super intense mouthwash, and I cannot even feel it in my mouth. I have been so sick and deteriorated so quickly with no diagnosis. This is the very least of my issues, but I just wanted to see if anyone has experienced this and then improved from it?

Does anyone get this? First, I get tight jaw muscles for a while. Then they become very weak and my jaw is misaligned. jaw joint with tmj becomes very painful due to weak muscles, which I know are not fully contracting. I can get my jaw to feel normal briefly with a tens unit, so clearly nerves and muscles are not working fully.

😍See our recent article on RheumNow.com how to dose hydroxychloroquine for disorders like #SLE, #lupus, #Sjogrens using modern, personalized medicine tools rather than guessing by body weight:

https://rheumnow.com/news/hydroxychloroquine-5-mgkgday-only-starting-point

https://preview.redd.it/y99o51s8hb2h1.png?width=1672&format=png&auto=webp&s=c6525b09f9365d58e6474182502399cafe6ea113

Donald Thomas, MD

I am currently taking Benlysta for Lupus, and my rheum hoped it would off label help Sjogrens.

It didn’t, but it massively helps my SLE - so he’s thinking of a switch to Rituximab. I also need to switch anyways so I can treat psoriatic arthritis. Too many meds crossing.

I’d love to hear any experiences on Rituximab for Sjogrens.

7 months ago, my entire body hurt. Hands feet shoulder fatigue etc. I have RA and Sjogrens. I started HCQ 400mg daily and I’m on a steady weekly dose of MTX 17.5mg. My entire body feels much better. Maybe I’m in remission? But when I wake up, my hands are still a little painful/stiff, but after an hour or so they feel better. Especially as the day goes on. Does this mean I’m in remission since I’m feeling a lot better? Or since I still have some hand pain/stiffness in the morning, does that mean I’m not in remission and maybe I need to up my MTX dose or try something else? Been on these meds for 6-7 months now.

Switched rheumatologists and have to get re-diagnosed. Pos SSA and various other antibodies. Sicca symptoms triggered by a viral infection. My eyes are always bloodshot and I go through a 10ml bottle of eye drops in about 5 days. Dry mouth but not as bad as my eyes. Crazy dry skin. However, my eyes still produce tears when irritated. First schirmer came back normal, but the nurse mistakenly told me it was okay to do it 10 min after using eye drops. So I have to repeat it, and since shoving cardboard in my eyes is irritating this one will be normal too. Then I have a salivary gland ultrasound.

I don't really care if he diagnoses me with Sjogren’s or not- it's secondary to "probably lupus" anyway and it's not like he can't still treat the symptoms.

I'm just cranky I had to get up early and get tortured.

Who else is cranky today? Tell me why and keep me entertained while I wait!

I don’t even have dry eyes or mouth.

What I do and always had was stiff joints. Even as a child my back would get stiff. I’m reading about Sjögren’s affecting more than just the salivary glands and I wonder if that could cause bilateral myopathy due to myositis attacking my nerves and muscles.

Early January I gave birth to my first child. Everything seemed fine at first until feeling to my legs did not come back. After two days in the hospital I began to have severe nerve pain on both my feet. Two mri later they tell me I have myositis inflammation on both of my legs and caused me severe nerve damage. All the doctors kept asking if I had gotten a vaccine recently or if I had lupus. My bloodwork only showed Sjögren’s syndrome and when I finally got to see a rheumatologist and a neurologist they told me that Sjögren’s is only a salivary gland issue. My neurologist was annoyed with me because I didn’t have an answer to what cause the myositis inflammation to my legs. If my rheumatologist is telling me that it’s not caused by Sjögren’s but I don’t have polymyositis or lupus and when I tell the neurologist that my test results only showed Sjögren’s and he also shrugged it off as just a salivary gland issue.

Does anyone have embarrassing sweating on face and head? Have you found anything that helps?

So, the past week I've been getting increasingly more itchy. Like it started on my neck, then my arms, then my legs, now it feels like my whole body is itchy. Some places have redness but I'm not sure if that is due to me scratching or not.

To reiterate, this has been going on for a week or so, today I started my first dose of plaquenil, so not a reaction to meds - will this help the itching? My doctor told me the medication could take 8 - 12 weeks to be effective and see benefit, but if this itchiness does not go away I'm not sure what to do. I scratched the first spot on my neck so much it looks like I have a hickey and I'm having to cover it with a band-aid. I have put hydrocortisone cream on the spots that do have a circle shape and redness, but I haven't really seen too much of a change.

God bless you all! I also have Sjögren's syndrome, diagnosed years ago. I'd never seen anyone with this type of illness until now, when I found this app, and I'm glad because I have so many questions. I don't take anything for it at all, and I'm worried because lately I've been feeling very bad. I even started taking Plaquenil, but my rheumatologist told me not to take it anymore because it doesn't really do anything for the condition. So I haven't taken anything since then. I'd like someone to tell me what Plaquenil does for Sjögren's, if it really works or not, because my doctor took me off it. Right now, my hair is falling out a lot; it's been going on for about a year straight, sometimes less, sometimes more. It's driving me crazy because I don't see any hair growing back because of the hair that's falling out. I have very little hair. What shampoo do you recommend for Sjögren's? Why is my scalp so dry, and my hair is extremely dry? I've tried so many things and nothing good happens. Please, someone tell me, I'm desperate. My doctor doesn't tell me much; they just leave me with the same worries. Also, my stomach is terrible. I had an endoscopy recently, and they found several large polyps that I need surgery to remove. They told me that's also due to Sjögren's syndrome. Obviously, I can't eat properly; I'm always in pain, burning, and nauseous. It's awful, not to mention the constant fatigue—it's horrible. What makes it worse is that my hemoglobin has dropped significantly; I have anemia, and that makes me even more tired. This condition is truly awful; it's not something to take lightly. And my family doesn't believe it and accuses me of exaggerating and saying it's all emotional. It's so frustrating because nobody understands. Please, someone advise me on whether Plaquenil would help. Does it really work for this? And what do you do when so much hair falls out? Because I've tried everything, even natural things, and nothing works. And what's a really moisturizing shampoo that's good? And for anemia, how do you raise blood hemoglobin levels? And what medications, if any, are there for Sjögren's syndrome other than Plaquenil? Please, someone tell me, thank you.

Hello, haven't been diagnosed yet but will meet a doc in a few weeks.

I've had several mini flares this spring. Sometimes they last just a few days, sometimes about a week. Is it normal/does this sound like sjögrens? I don't get all symptoms at a time, a flare can only affect my eyes, mouth or stomach (gerd).

Also I usually get symptoms during the latter half of my menstrual cycle, does this match with anyone's experiences? I've decided to try different hormonal methods to help with my symptoms, such as Vitex or hormonal birth control. Has anyone had any changes with these type of stuff? I feel like there is a hormonal element in my symptoms...

I know I have ichthyosis vulgaris. It’s a relatively new diagnosis, but even from a young ago I knew my skin was different. Compared to what I’ve seen from others here, I’d say mine is relatively mild.

But I don’t know if I am oversimplifying things or what- I think of it as just the outer layer being dry.

I question Sjorgens because it’s like almost every part of me is dry…mouth, throat, eyes (when they ain’t leaking), all the places.

Is this actually how VI presents? Are there other avenues I should be looking into?

I appreciate any insights and thank yall for taking the time to read this.

Hi, first time poster. I am currently developing a new oral moisturize lozenge for people dealing with constant oral dryness and discomfort. I’m here just to ask for honest advice on how I can make this the best option on the market, from people who deal with the issue every day.

The focus:
Long lasting relief, a return to normal mouthfeel
Slow dissolve to extend relief
No sugar oral friendly clean ingredients
To beat the (very simple, mediocre) current market products

If your genuinely interested in giving feedback on:

•Products you have tried and were unhappy with
•What your ideal or “dream” oral dryness product would look like
•how a daytime focused lozenge might help you at night, while sleeping
•Ingredient sensitivities
•price, what you would and wouldn’t spend on something that truly gave you hours of relief per use

I would be enormously grateful. Please feel free to comment or DM me with your feedback.

I will have trial samples and will be collecting feedback from users within the next few months. If you would be interested in receiving samples in exchange for feedback on the product DM me and I will reach out when they are ready.

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Hello everyone!

I just saw my rheumatologist and my biggest complaint is fatigue. Very debilitating fatigue. I asked what the heck do I do to make it better?? Rest doesn’t help, ofc. No meds for it. Like .. what do we do? She said to try and do resistance training and Nordic pole walking. Nordic pole walking was specifically researched for Sjogrens patients, she said. It helps with stability and also works as upper body strength not just the legs.

I was a gym “rat” up until maybe 3 yrs ago. Then my health got worse, and I switched to just walking. And now I’m at the point where I can’t do any exercise 😭. I’d love to at least walk, as much or as little as possible again. So, before I invest in $100+ poles, I wanted to check if any of you tried it and what your experience was/is? I know we’re all different ofc, but I’d still love to hear about it.

Thank you so much and I hope you’re doing well today!

I am currently in Ukraine. Here, most people don't even know Lupus, let alone Sjogren's. I am sure this is true many places, and for most of history. Which has led me to believe that the stereotype of Grandma's always having hard candy, is, self medicating. And makes me wonder how many other forms of unaware self medicating does and has existed.