r/Sjogrens

Has anyone else had LDN make them more sleepy and foggy headed? I recently started taking it and I’m not sure if there’s an adjustment period or if I should be doing something differently. I’d normally message my rheum, but he changed clinics so I’m between providers at the moment.

I first took my dose during the day and I felt out of it all day, except for like 45 mins where I felt really good. I’ve been taking it at night now, which seems fine, but I end up sleeping until like 2pm and still feel groggy all day. It feels like I’m taking a big dose of Benadryl or cold medicine. Is this normal? Everything I read has been the opposite, people saying they’re energized and can’t sleep.

I also have ADHD, not sure if that could have anything to do with it. I take adderall, bupropion, and HCQ during the day. I took my adderall a couple hours ago, hoping to do some studying, but my head still feels like a balloon and I can’t focus at all.

Has anyone experienced something similar with LDN and did it get better? I’m really hoping this medication can help me, but I can’t get through my days like this.

Finally going to Mayo for a week or so for a multi disciplinary review of my diagnoses. I believe that the Sjogrens is my primary disease that causes my extreme constipation (I only go once every 7-9 days), Neuropathy (still fairly mild), and POTS which was the nail in the coffin of me not leaving the house. My first appointment is tomorrow morning, a video call with I guess the Doc assigned to my case. Then hopefully soon I will go to the campus in Jacksonville, FL and figure all this out. I’m 61 and I want my life back desperately before I’m too old to enjoy the things I still want to do. I bring this all up because as a long time autoimmune veteran that comes from a family of autoimmune diagnoses, I really need some docs to come together and talk to each other. I will come back and tell you everything they say if you are interested. I hope this all made sense I’ve been very foggy the last few days.

First saw a PA for diagnosis because to see the board-certified Sjogren's specialist was going to be a year out. Was dissatisfied by the PA's assessment. Asked for an appointment to the specialist even if I had to wait a year, but strangely, she had an opening in a couple weeks (a cancellation I guess). The PA only diagnosed me with sicca. With the same info, the specialist diagnosed me with Sjogren's, although not very far progressed. She also said an ultrasound would be available whereas the PA insisted the lip biopsy was the way to go, even though I said I didn't want it. Apparently the department does do the ultrasounds.

The specialist is leaving the state at the end of the month, but at least I have some sense of where I stand and what to look out for, moving forward.

This specialist is the clinical supervisor for this PA, but apparently the PA is not up to date in their approach.

I post all this to provide perspective to anyone who feels they did not get a thorough workup from rheumatology. Always advocate for yourself - pretty much no one else is going to do that, at least not once you're an adult.

Currently on generic restasis 0.05% for 1.5 months, and my eyes are becoming drier and drier.

It’s so dry lately that i feel literal sandpaper texture, and yesterday night my eyes burned despite closing my eyes, couldn’t sleep the entire night.

Anybody with such bad dry eyes? Literal 0 tear production. If so how do you guys handle it? I use duratears ointment and it isn’t helping at all.

Also will my eyes get better? Or am i stuck permanently like this…

Long story but no one knows what my actual issue is but I'm on hydroxychloroquine and it seems to help. However I've been feeling sedated and depressed and if I skip a couple of doses feel better. I'm thinking of trying 100mg instead of 200 mg. Of course I'll run by my rheumatologist but curious if anyone taking it ran it anything similar. Not sure 100 mg will be enough, but I'm sensitive to meds and a kind of small person. Hope it's okay I'm posting here, there isn't a clear subreddit for me to post in since no one knows what my condition is just that it resembles something autoimmune (and I do have dry eyes and mouth and ophthalmologist mentioned sjogren's but my labs are normal).

I'm F37 and was diagnosed with Sjögren's two years ago. Last fall I had a pretty nasty UTI—had to take two different antibiotics and it took a full four weeks to clear up. I'd never had a UTI in my life before that, and my doctors suspected the sudden onset might be related to Sjögren's.

Since that UTI, I've been dealing with a really sensitive urethra. I've been tested multiple times and even had an ultrasound to rule out any lingering infection—everything came back negative. I often get an uncomfortable feeling, sometimes almost a stinging sensation, right before I feel the urge to pee. It's just really annoying and uncomfortable.

My urologist said this is actually pretty common with Sjögren's, since the thin mucosal lining can make the urethra more sensitive. Has anyone else dealt with this? Any tips would be so appreciated—it's driving me a bit crazy!

Hi- already diagnosed. Looking for input, I’ve been on HCQ for 5 weeks and suddenly my hair texture is different and the volume is much thinner. This is not my baseline.

If this happened to you, did it go away? And how long did it take?

Edit: only looking for stories of people this did happen to and if it resolved

Hi everyone. I have neuro-Sjögren’s, and I was wondering if anyone else with neuro-Sjögren’s experiences something similar.
Besides my dysautonomia symptoms, I have episodes where I feel extremely unwell, and the fatigue is completely out of proportion to the amount of activity I do. For example, if I simply get up to pour myself a glass of water or walk a few steps around the house, I feel like all my energy suddenly disappears. My muscles start to ache, and it feels as if I've done intense physical exercise, even though I've barely done anything.
This isn't just the dizziness or rapid heart rate that I associate with POTS. It's a completely different feeling, a whole-body collapse. I feel like I have to lie down immediately, not because I think I'm going to faint, but because it feels like my body simply can't keep functioning. It's as if every cell in my body has run out of energy.
During these episodes, I also have a terrible overall feeling that is very difficult to describe. The closest way I can explain it is that I feel as if I've been poisoned or intoxicated. I feel profoundly weak, nauseated, my muscles ache, and my entire body feels extremely unwell. Sometimes these episodes even happen while I'm already lying down and doing absolutely nothing.
These episodes can last for several days, not just a few hours, before I gradually start to feel better again.
Has anyone else with neuro-Sjögren’s experienced this? Is this considered part of the disease, or did you eventually find another explanation?

Hasn’t it been approved already? Does anyone know when it’ll be available to patients? I thought it was going to be last month

I have a few questions...With Sjogrens is it possible that your eyes are so dry they actually water at times like your crying? Also is headaches on the bones behind your ears and down your jaw a symptom? Does your tongue get white with cracks in it? The only thing I ever heard of this was that Venus Williams the tennis player has it.

Did hydroxychloroquine make your Sjögren’s symptoms milder?

To everyone who responded to my previous post saying their Sjögren's is mild—I have a question.

I'm trying to understand what I can realistically hope for because right now I'm really not okay. I have so many symptoms, and they're affecting every part of my life and almost every part of my body, I feel like this is pure torture.

When you say your Sjögren's is mild, do you mean it has always been that way, or did it improve with medication?

Since my appointment yesterday with my rheumatologist, I haven't been able to stop crying. She told me that hydroxychloroquine may take 6–9 months to start working. I honestly can't imagine living like this for another 6–9 months.

For those who have improved, did your symptoms become much milder after treatment? Is it possible to go from feeling this sick to having only mild symptoms?

I'd really appreciate hearing your experiences.

Hi, I am very scared for my first rheumatology appointment. I don’t know what to expect or how I’ll come out of it. I’ve been very stressed about this and just feel sick overall. I’m tired of the muscle pain, nerve pain, joint pain, everything. I wish it would just go away. I’m over it all, and I don’t know why I continue doing this. I’m just so scared and don’t know what to expect from any of this.
I’ve been stuck in bed this week, and my parents say that I’m 18 and should be going out with friends. But I’m so tired of this. I just want to be normal again. I miss it.

does anyone get nerve tingling or buzzing from prednisone?

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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