A question for seasoned dry eye sufferers

[tiredndryinTN]

I don't suppose it could hurt to ask.

I have bottom plugs (no help), I tried Restasis (no help), I tried Xiidra (no help and it actually made the dry eye worse ).
I found that Evoxac was better for my dry mouth symptoms but does nothing for my eyes. I have been taking pilocarpine for about 6mo. Moderate help with dry mouth, and dry sinuses, but a little help with the eyes. Just enough so that I'm not constantly putting in drops every 5min and getting nightly corneal erosions. I usually go a week or more between mild erosions now. How you respond may vary. I mostly just have to apply 2 products to my eyes at night (an ointment and a gel drop) and reapply the gel drop when I wake at night. I take the pilo around the clock every 4 hours. Since I have started this, even when I do have an erosion, it isn't what I call a grand mal, where it's across the pupil so my vision is blurry for days and hurts during the day and takes about 3 days to heal. Mine are now around the peripheral of the eye and most of the time, though it hurts like the dickens when it happens and for a few hours after, I don't usually get blurry vision all day.

My eye dr can do nothing for me really. I had increased ocular pressure last time. So I'm going for a recheck on Tues and to tell him Xiidra didn't work. I could get upper plug, but the lowers were a big fat failure so I don't know what good that will do. If my eye isn't making what it should, that isn't going to make it make more.

Anyway, blah blah. I blabber on so.  Well at least you know you aren't alone, right?
I hope you find relief soon.

Ugh, it sounds like you are having a rough time with dry eyes too! I'm sorry to hear you haven't found any relief. I tried upper and lower plugs and it didn't help at all. I actually wouldn't recommend that because it can cause increased infections (I had one while all 4 were plugged).

Did your dry eye come on suddenly,  or was it more of a gradual thing?

Finally just got back here. Goodness time flies!

The dry eye did come on suddenly, but I had had other Sjogren's symptoms for a few months before the onset. First, fatigue, then dry mouth, then dry sinuses. All slowly came on. Then, bam...I had my first erosion one night. Both eyes.

I went to my eye doc. No help. I guess it's time for an ophthalmologist, but I don't think he'll help much either. I don't have the money to do that, let alone get in with one before the year is out. The optometrist, who was the one with the most experience in dry eye in the practice, said to do concentrated Omega 3s, like Krill or Flaxseed oil. And to come in for an amniotic graft when I have my next erosion. That's $1200 per eye. 

I hope things are going well for you.

[JustAMom]

My 25 year old daughter suffered for 4-5 years with severe dry eye, spent a fortune on eye drops. Tried exovac it made her ill, had lipiflow procedure, did not return moisture. Many things without much relief.
Saw an opthamologist who went into the field to try to help dry eye patients.. Nothing but lipiflow from him.
Until...
We discovered through research a hormonal connection. She was on birth control pills due to probable PCOS, erratic cycles.. Anyway, Natural Progesterone cream saved the day, and the nights, and then the weeks. She is one month of dryness gone. It's been miraculous really. The connection makes sense, and more doctors should be well aware. We figured it out on our own, after everything else was tried and tested. During ovulation, progesterone becomes the dominant hormone and produces moisture , so any interruption like birth control pills that halt ovulation can then result in dryness. There is some science on it out there, but it seems few are informed of it.

I would encourage any woman with dryness struggles to have their hormones checked out. Had this been done sooner for my daughter, so much misery could have been avoided.

[Dolly Dimples]

  HELLO ALL, LONG TIME SINCE I POSTED BUT STILL SUFFERING LIKE ALL OF YOU, MY VISION HAS BEEN REALLY BAD SO WHEN I  WAS AT THE EYE CLINIC RECENTLY IT WAS SUGGESTED i HAD LAZER TREATMENT , i SHOULD HAVE EXPLAINED ABOUT THE  DRYNESS, BUT THEY ARE SO BUSY AT THAT PLACE, EVERYTHING GOES BY THE TIME ONE GETS TO SEE SOMEONE,  i WONDERED IF ANYONE HERE HAS HAD LAZER TRATMENT TO THE EYES, AND WHAT WAS IT LIKE . DONT GET THE TREATMENT UNTIL 5TH JAN, THANKS FOR ANY FEEDBACK, DOLLY X

[cccourt1942]

Don't. Laser surgery will not help dry eyes.  Research for yourself online.  Don't.

[Linda196]

Hopefully in the upcoming appointment a history will be taken, and as soon as they hear the words Sjogren's or autoimmune they will say "sorry, but we wouldn't touch you with a ten foot laser" or words to that effect.

That's the response I got 20 some years ago when laser surgery was becoming popular, and having dealt with severe myopia all my life, I jumped at it, only to be told that it was totally and completely contraindicated in anyone with autoimmune disease, and my Sjogren's hadn't ever reared its dried out little shrunken head yet!

If  they don't acknowledge your dry eye...RUN!