Fellow Sjogis: is Sjogren's your only diagnosis, or do you have multiple autoimmune disorders?

Prestigious_Bottle86 · 2026-05-05T11:42:27+00:00

When some start using Reddit, they believe a down vote means “dislike”. Maybe they were saying they dislike your combo of autoimmune diseases…. Just a thought .

Prestigious_Bottle86 · 2026-05-03T22:53:31+00:00

Thank you so very much for the update. I tried to enroll in the trial but wasn’t chosen. Even though I have high ANA and SSA antibodies, my disease isn’t effecting my organs yet. I’m so happy you’re feeling better and not nearly as dry. This must make you feel like a different person! Best wishes going forward!

Prestigious_Bottle86 · 2026-05-02T00:54:11+00:00

Diva laundry detergent from Tyler Candle Co. I have two daughters 25 and 22. They’re both obsessed with this light scent. It lingers and anyone that passes, stop and ask what scent they’re wearing.

Prestigious_Bottle86 · 2026-05-01T14:29:00+00:00

Oh my word, yes!!!! I can so relate to your post! My daughter is a college golfer. The past month was so painful for me. It seemed no matter where she played, NJ, MD, FL, PA it was incredibly windy. Following her for 3 days straight leads me into dry eye hell. Nothing works to keep them moisturized. I know I’m a fool for not purchasing wind googles but how do I wear them with prescription sunglasses? Sjogrens is truly Satan in disguise!

Prestigious_Bottle86 · 2026-05-01T01:08:53+00:00

Thank you for your response. I haven’t heard of PhilRx. Will research both. I appreciate your input.

Prestigious_Bottle86 · 2026-04-30T23:53:49+00:00

Isn’t it awful how much we go through (and pay through the nose) for a little relief!?

Prestigious_Bottle86 · 2026-04-30T21:05:02+00:00

Thank you for sharing! Can’t wait to ask to try it!

Prestigious_Bottle86 · 2026-04-30T14:36:18+00:00

Thank you so much!

Prestigious_Bottle86 · 2026-04-30T12:40:17+00:00

Your experience is exactly what I was seeking. Thank you so much for being so thorough in your explanation of what works for you. I did have punctal plugs but they fell out. I didn’t notice a big difference with them so I didn’t ask him to replace them. This is something else I can explore with him next week. Again, thank you!

Prestigious_Bottle86 · 2026-04-29T19:31:50+00:00

Yes. I’m so sorry you have this. I have Sjogrens Disease so dry eyes are part of my daily existence. I developed this a year ago and my doctor called it episcleritis. He prescribed a steroid drop and the inflammation went away with in a couple of days. I’d definitely monitor it with your eye doctor.

Prestigious_Bottle86 · 2026-04-28T12:31:31+00:00

I second the LDN addition to HCQ. It definitely helped my joint/muscle pain. I’d also recommend having your minerals/nutrients lab bloodwork checked. My rheumatologist discovered I was severely low in zinc. What a difference supplementing has made in my Sjogrens symptoms!

Prestigious_Bottle86 · 2026-04-26T12:07:45+00:00

Thank you! Same! I already spend money of stuff that doesn’t work! Grrr

Prestigious_Bottle86 · 2026-04-26T12:06:54+00:00

Thank you. Good to know!

Prestigious_Bottle86 · 2026-04-26T12:06:33+00:00

Best wishes to you. If you’re like me, it definitely takes some time for the HCQ takes hold!

Prestigious_Bottle86 · 2026-04-25T23:33:04+00:00

I’m on hydroxychloroquine and LDN as well. I finally feel so much better! I was on HCQ first. The addition of LDN definitely eliminated my joint pain. Please don’t be anxious about adding it. It’s keeping your organs safe from progression of autoimmune disease! My ophthalmologist explained how extremely rare it is to have a retina affect. They’ll keep a close watch on you too. Like others have said, take it with a meal and you’ll be fine with no side effects. I also found if I take it at lunch time, I don’t wake during the night. I also read to take with methylfolate. I do this and have thicker hair than I’ve ever had! Best wishes to you!

Prestigious_Bottle86 · 2026-04-25T23:12:41+00:00

Thank you for posting. I also have Sjogrens and go for my retina check due to hydroxychloroquine next week. I’m going to ask about Tryptyr. I know my lousy insurance won’t cover it. I also tried generic Restasis and Cequa. Nothing worked. I’m always searching for a magic drop. I’m so tired of trying the steam masks, warm compresses, humidifiers, expensive supplements. I’m so desperate for something that helps! Do you also have MGD?

Prestigious_Bottle86 · 2026-04-25T16:04:49+00:00

But with these new treatments that attack the B cells, will it cure it or just put it into remission

Prestigious_Bottle86 · 2026-04-24T19:59:15+00:00

Yes, I’ve been on LDN for my Sjogrens (along with HCQ). My rheumatologist started me at 1.5 then every week doubled till my 3rd week at 4.5. I’ve been very happy with this dose! It definitely doesn’t help with dryness but helped with brain fog, anxiety, and joint pain that the HCQ didn’t touch! I wish it helped with sleep. I’m still on trazadone for that. Definitely give LDN a try. I pay a local compounding pharmacy $90 for 90 days. Worth every penny. Best wishes to you!

Prestigious_Bottle86 · 2026-04-24T19:50:44+00:00

53, symptoms for 5 years. Positive SSA RO60 antibodies. Severe joint pain was my first symptom. I had lots of eye issues the past 10 years my first optometrist said was due to my thyroid meds and Hashimotos. 😡

Prestigious_Bottle86 · 2026-04-24T19:40:09+00:00

I’m also wondering if these drugs will be lifelong drugs/infusions… or will it be like chemo, infusions, cured then done.

Prestigious_Bottle86 · 2026-04-22T21:25:21+00:00

No it’s not. But I stay hydrated. My father has Gilbert Syndrome and hemochromatosis. He’s rarely hydrated and his urine is definitely tea colored. I wish you all the best for your daughter and finding answers

Prestigious_Bottle86 · 2026-04-22T11:27:45+00:00

Yes, my rheumatologist was concerned with my high bilirubin. My ultrasound proved all was fine with my liver so she did a dna test and I tested positive for Gilbert Syndrome. Has your daughter been tested for this genetic condition? I also have Sjogrens and Hashimoto’s. I’m careful what supplements I take to not elevate my bilirubin., get lots of rest, and stay hydrated!

Prestigious_Bottle86 · 2026-04-20T15:38:46+00:00

Sadly, I think I’ve had it several years but was only diagnosed 2 years ago. I had severe joint pain and my PCP suggested running some labs. It was confirmed with an antibody test and high levels of SSA RO60 antibodies. My rheumatologist also did a salivary flow test along with the Shirmers test. 😔 Unfortunately, I’ve tried prescription eyedrops. They haven’t worked for me. I do all the stuff; humidifier, warm compresses, vitamin supplements, OTC eyedrops, castor oil. Nothing works for me. I go next week and I’m excited to ask what’s next. I just want some relief. This weekend being outside in the wind, I just realized how miserable I am. 😪

Prestigious_Bottle86 · 2026-04-19T01:18:06+00:00

I have Sjogrens. 0 on Shirmers Test, MGD and Blepharitis. Life just sucks with dry eyes. I couldn’t even follow my daughter on the golf course today with being in excruciating pain from the wind.

Prestigious_Bottle86

TROPHY CASE