Author Topic: A question for seasoned dry eye sufferers  (Read 383 times)

Cmeeker

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A question for seasoned dry eye sufferers
« on: November 07, 2017, 11:47:21 AM »
Hi all,

I've been slowly but surely learning to cope with my new diagnosis and managing my symptoms decently.

However, there is this one thing I cannot stop thinking about and obsessing over. My eyes are very dry. I can no longer make any tears when I cry. This came on very suddenly. I was wearing contacts and crying in June (didn't even know I had sjogren's) then by July, I had some kind of flare up and my eyes suddenly dried up. Is there any hope that I can get my tears back, even just a little bit? I'm on xiidra which has made them much more comfortable and I'm able to work all day on a computer without being in complete agony. But I'd love to make some tears again. My rheumatologist seems to think that they may just come back as the disease waxes and wanes?

Should I ask my eye doctor about using restasis in addition to xiidra since it promotes tear production?

I'm 33 and I just cant imagine going for the rest of my life never shedding a single tear!

Navigator

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Re: A question for seasoned dry eye sufferers
« Reply #1 on: November 07, 2017, 01:53:12 PM »
Hi Sorry to hear about your eyes.  They are so important and you need to take care of them.  First off....you need to have an ophthalmologist take over the care of your eyes. Not an optometrist, you have gone beyond that level of service.

You may not be able to wear contacts going forward.  They can be drying and Lazik surgery could also make things worse.   You need to discuss that with the MD ophthalmologist.

Treatment of SJS is multilayered.   Restasis treats inflammation of the eye.   Evoxac or Salagen encourage the glands to produce more moisture.  The way I look at it they work together.  Restasis you get from an ophthalmologist...who you should be seeing anyway if you are on plaquenil. Most rheumatologists will not order plaquenil without an ophthalmologist having checked your retina.

Once you get your multilayered support in line you may find that think have improved.  You might get back to where you were before but there is no guarantee.

While I know this is disheartening, it could always be worse. It helps to be positive. You have a long and happy life ahead of you.
Hashimotos thyroiditis, Primary SJS, IBS, autoimmune hearing loss, leucopenia, arthritis,asthma.
Synthroid, Plaquenil, Crestor, Evoxac,Vit D , Fish Oil, Restasis, Daily Walking, Sleep, Baby aspirin, Probiotic, avoid gluten,dairy and sugar, hearing aide, gratitude, big dog

Cmeeker

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Re: A question for seasoned dry eye sufferers
« Reply #2 on: November 07, 2017, 03:02:51 PM »
Thanks for the advice and kinda words navigator :)

I should have specified in my post, I do see an opthamologist (way more than I?d like since my eyes got bad!). I also have plugs that she put in because my eyes were so bad. I  use Evoxac though I?m not so sure it?s heling my eyes at all.

I was mostly just wondering if anyone knows if there is a chance that my tears will ever come back? I just can?t believe how suddenly  they went away. I was told xiidra is slightly better than restasis, but I?m wondering now if I should ask about using them as a combo.

tiredndryinTN

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Re: A question for seasoned dry eye sufferers
« Reply #3 on: November 08, 2017, 08:46:33 AM »
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.  ;D Well at least you know you aren't alone, right?
I hope you find relief soon.
Seronegative, diagnosed Sicca Syndrome with fatigue, Raynaud's, and joint pain. Salagen and Plaquenil. I've found no supplements that help anything after many trials.

Wendykarla

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Re: A question for seasoned dry eye sufferers
« Reply #4 on: November 08, 2017, 09:50:44 AM »
If there is an eye hospital in your area, get to it.  This may be an emergency, such as an infection....Do you have blurry vision, sensitive to light, pain?  Please get to ER or find a cornea specialist.  I'm so sorry.  In the meantime, you may want to get the Vaseline/mineral oil gel from your local pharmacy, and insert it under your lid.  It looks like an ointment...people choose different ones...Systane, or something similar in the ointment.  Then get a Gel Mask...contacting the internet site The dry eye zone and talking to Rebecca (who had suffered from dry eyes) would be a good suggestion.  She sells the masks and is very knowledgeable about the drops, and may know doctors to consult in your area.  In addition to the Restasis, Xyidra (sorry spelling), you will probably get tear plugs and/or the drops in which they recycle your own blood and you use as eye drops, Doxycyclene (spell).  They may use an amniotic fluid patch on you in the short run....I am so sorry!  Hang in there but please contact a specialist today!! Hugs!

Cmeeker

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Re: A question for seasoned dry eye sufferers
« Reply #5 on: November 08, 2017, 11:30:28 AM »
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.  ;D 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?

vrystaat

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Re: A question for seasoned dry eye sufferers
« Reply #6 on: November 08, 2017, 06:32:47 PM »
My dry eye problem occurred 6 months after painful peripheral neuropathy suddenly started.
I was taken care of by a brilliant Ophthalmologist. He started me on Restasis, and 2 weeks later inserted punctal plugs. This did help for about 4 years.
I have had progressive severe dry eye since then. Recently, I developed severe eye pain and dryness. He found anterior and posterior scleritis, but no erosions.
Every day I use Theratears about 4 times a day, and at night. I also like Systane gel, and it lasts about half the night.When the flare up is severe I use Ketorolac 0.5%, 3 times per day. If this doesn't work, I go on to Prednisolone Acetate 1% eye drops for about 3 days. Ketorolac helps immediately, and the Prednisolone cures it for up to a week. It is not recommended to use Prednisolone for more than 3 days, as it can have complications, such as cataract and ptosis. Of course, systemic Prednisone can be taken as a last resort.

Good luck.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, gamma 3 globulin low;Multiple infections;Brain fog

SunshineDaydream

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Re: A question for seasoned dry eye sufferers
« Reply #7 on: November 09, 2017, 10:44:55 AM »
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.

Bottom plugs didn't help me at all, but the addition of top plugs made a world of difference. My ophthalmologist said adding tops helps when bottoms alone don't work because top puncta suction tears. I've had all four in since February with no problems. Might be worth it for you to try.
Sjogren's, lupus and osteopenia
Rx: Evoxac and Restasis 
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

SjoGirl

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Re: A question for seasoned dry eye sufferers
« Reply #8 on: November 11, 2017, 02:17:31 PM »
Cmeeker yes tears can return! I could not produce tears for a year when I was first ill. I use Restasis and also have punctal plugs and find that now my right eye actually runs at times. I have cried and been appreciative for every tear.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

SabbraCadabra

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Re: A question for seasoned dry eye sufferers
« Reply #9 on: November 11, 2017, 08:20:11 PM »
My rheumatologist seems to think that they may just come back as the disease waxes and wanes?

For me, I have always found that it waxes and wanes. When it's humid out, and my stress is pretty low, my eyes are fairly okay...but come the dry season, like right now, and especially when I'm under a lot of stress, my sockets might as well be a desert.

I use Bausch & Lomb's Soothe XP drops, they have mineral oils in them, so I get some decent relief for a few hours. Most eye drops, and "crying" tears, are designed for washing debris out of your eyes, so they don't moisturize very well.

I'd like to get some gel, but every time I think to look, they don't have any.

dryeye09

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Re: A question for seasoned dry eye sufferers
« Reply #10 on: November 12, 2017, 05:45:14 AM »
I have dry eyes caused by Sjogren Syndrome.  I use Lacrisert twice a day; it's the only thing that keeps me from using tears every 15 minutes.
Dx:  Primary SjS,
Rx:  Evoxac, Lacrisert, Restasis, Ilevro, erythromycin

irish

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Re: A question for seasoned dry eye sufferers
« Reply #11 on: November 12, 2017, 04:11:53 PM »
When a person has such hard to treat issues with eyes it is almost imperative that a 2nd opinion is done. With the sjogrens and autoimmune diseases there are serious eye issues that not all eye docs are aware of or are slow to identify. If these aren't treated blindness can occur. Good luck all. Irish

Cmeeker

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Re: A question for seasoned dry eye sufferers
« Reply #12 on: November 13, 2017, 03:51:54 AM »
When a person has such hard to treat issues with eyes it is almost imperative that a 2nd opinion is done. With the sjogrens and autoimmune diseases there are serious eye issues that not all eye docs are aware of or are slow to identify. If these aren't treated blindness can occur. Good luck all. Irish

irish, thank you. this is actually really good advice and something that hadn't occurred to me. I did seek the opinion of 3 rheumatologist but hadn't thought to do the same with my eye doctor. and since my eyes are my worst symptom, I really should see a 2nd doctor. mine supposedly specializes in dry eyes, but to be honest, I always leave with a feeling of uncertainty about my eye issues. guess it's time for yet another appointment....

Cmeeker

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Re: A question for seasoned dry eye sufferers
« Reply #13 on: November 13, 2017, 03:52:50 AM »
Cmeeker yes tears can return! I could not produce tears for a year when I was first ill. I use Restasis and also have punctal plugs and find that now my right eye actually runs at times. I have cried and been appreciative for every tear.

so there is hope!!!!!!! thank you!!!  :D
this is why I've been wondering about restasis. I don't think xiidra has the same ability to restore tears. going to ask about adding restasis back!

Maria3667

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Re: A question for seasoned dry eye sufferers
« Reply #14 on: November 14, 2017, 12:57:08 PM »
Hi Cmeeker,
Have you tried using low dose dhea and/or pregnenolone? Some members here have good results either using sublingual drops or a supplement for creating more tears. It works for me too.

Good luck!
49, F. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex