Author Topic: Help with EYES: What now?  (Read 380 times)

Sharon

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Help with EYES: What now?
« on: March 07, 2019, 02:12:04 PM »
My eyes are severely inflamed, painful, constantly irritated.
I have just failed on Xiidra which just irritated my eyes further (severely!).
I have also tried: Restasis, punctal plugs (top & bottom), autologous serum drops, castor oil, manuka honey ointment, testosterone and estrogen creams, Lotemax, all moisturizing eye drops (can only do preservative-free), hot compresses, cold compresses, lid massage. I do not think scleral lenses would work since they do not cover the edges of the eye which are the most inflamed by me and I cannot manage contacts.
Can anyone suggest something else because I feel there is nothing left to even try at this time.
What's left???  :-\ :-\ :-\
« Last Edit: March 07, 2019, 06:22:31 PM by Sharon »
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

ktfabian

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Re: Help with EYES: What now?
« Reply #1 on: March 07, 2019, 02:21:31 PM »
Sorry I don't have anything to offer. I couldn't handle any of the drops except over the counter Theratears. The prescription drops all caused too much burning. I was fortunate that punctal plugs have helps.

I hope you find something that helps,
Tracy
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Sharon

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Re: Help with EYES: What now?
« Reply #2 on: March 07, 2019, 06:23:16 PM »
Thanks Tracy, glad you found some relief with plugs.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Carolina

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Re: Help with EYES: What now?
« Reply #3 on: March 07, 2019, 07:03:58 PM »
I don't have any solutions, either, Sharon.

My eyes are getting worse and worse.  I had a corneal scratch a couple of months ago, and the doctor ophthalmologist recommended Ultra Systane six times a day.

I have to have the humidifier running and keeping the humidity at about 50 percent.  As soon as my husband forgets tor refill the humidifier I can feel my eyes burning.

I cannot imagine how much misery you are in.  It feels like you can't do ANYTHING when your eyes are in misery.

Thinking of you.

Elaine
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Skylar

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Re: Help with EYES: What now?
« Reply #4 on: March 07, 2019, 07:32:22 PM »
I'm petrified of having a corneal scratch or worse. You have explored more options than I have, my only suggestion is to try to find the most soothing eye drop and use it as often as possible.

I do use Restatsis and it does help a little (I stopped taking it and discovered it was helping) but by eyes are still far too dry. I use Refresh Plus drops in the single use vials - and I'm using them many times a during the day - it varies according to the humidity level. I go through so many vials (and I use the whole amount) that I buy the 100 vial box at Costco - I stock up when they have them at a reduced price.

I keep the vials in my purse, my car, bedside table, kitchen table, end table, pockets ........ everywhere so that the minute they feel funny I can immediately put drops in. I put them in while driving (while parked), out at concerts, in the grocery store, walking my dog and multiple times in the middle of the night when I roll over in bed....... I don't wait till I'm at home or in a bathroom or some more convenient place.

My ophthalmologist had suggested punctal plugs, but I need that moisture draining from my eyes into my nose because that's too dry too.

I hope you find the solution

irish

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Re: Help with EYES: What now?
« Reply #5 on: March 07, 2019, 09:14:33 PM »
Did you know that Restasis comes in a weaker strength??? Some people find it more tolerable. I haven't heard people speak of it on here but had seen several years ago that the dilution is less for people who are bothered by burning.

I'm just wondering if there is an allergic component involved. I don't know if foods would bother but I am wondering if the products you bath with, detergents, hand lotions, etc could possibly cause this ongoing sensitivity. Just a thought. Also, I would wonder about even the normal eye drops with saline....could they even have too much saline in them for you. I would think that anything with oil in it would also contribute to burning. I wonder if a pharmacist who can make up prescriptions (the name just escaped me) could come up with something that would work for you.

Maybe Linda will come on and give you some ideas. Good luck. Also, I am so sorry that you are having such a miserable time of this. Irish

Sharon

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Re: Help with EYES: What now?
« Reply #6 on: March 08, 2019, 04:20:45 AM »
That you all for your responses!

Eliaine- Yes, it really is hard to do anything in this condition. I do have corneal scratches which is why my doctor wanted me on the autologous eye drops, but they made my eyes so much worse and one of my eyes remained harmed from that trial I thnk.

Skylar- Yes, I also carry eye drop vials everywhere and use them in all kinds of strange places because I just need to.
You could try temporary plugs only in the lower ducts and see how that works for you. They can always be removed.

Irish- The Restasis doesn't bother me but doesn't seem to be helping either. The Xiidra is definitely causing a reaction!
You are right- there is an allergic component involved. I have MCS so keep away from anything that may cause reactions, but still: always something in the air that I can't control. Of course any eye drop with preservatives causes an immediate reaction of swelling.
I ddid want a pharmacist to make me an eye ointment containing Ketotifen or Cromolyn Sodium (ointment so it doesn't evaporate from my eyes as all these drops do). No pharmacy in my country is willing to do this even though I have a doctors prescription for it!
I found one in Canada who is willing but they insist I need a Canadian doctor's prescription for it....What a saga! 
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

dryeye09

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Re: Help with EYES: What now?
« Reply #7 on: March 08, 2019, 06:26:41 AM »
Lacrisert twice a day is the only thing that gives me any relief.  A discount code from Bausch + Lomb gets me two boxes a month from Walgreen for $35 with my health insurance.  Inserting Lacrisert is a hassle, but it's worth it for the relief it provides.

I remember reading that stem cell transplants might be possible in the future for regeneration of lacrimal and salivary glands.  Stem cells eliminating HIV has been in the news this week, maybe we are getting closer to stem cell treatment for many more diseases.
« Last Edit: March 08, 2019, 08:05:19 AM by dryeye09 »
Dx:  Primary SjS,
Rx:  Evoxac, Lacrisert, Ilevro, erythromycin, IPL for dry eye, Avenova, warm compresses with eyelid massage

markt

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Re: Help with EYES: What now?
« Reply #8 on: March 08, 2019, 11:58:20 AM »
Bandage contact lenses for dry eye!   I wear them without a prescription because I have great vision otherwise...

For Pete's sake... tell your Opthalmogoligst to quite being a dope and let you use these along with drops (and occasional antibiotic drops).   

These have afforded me much normalcy and act as a moisture barrier.  what's more they offer protection from mechanical blinking irritation.

Scleral do in fact cover your sclera / conjunctiva (white of your eye).  They are not quite what people write them off to be.  Very helpful!  Also, there are unique holders with a LED light you focus on while inserting them so that you don't blink or look away (natural reaction)... makes insertion much easier.

Sorry to hear you are suffering.

vrystaat

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Re: Help with EYES: What now?
« Reply #9 on: March 10, 2019, 02:47:04 PM »
I use the following drops for my eyes, as recommended by my Ophthalmologist:
. Restasis
. Acular
. Prednisolone acetate 1% Ophthalmic Suspension

Acular (Ketorolac tromethamine ophthalmic solution) 0.5% is a member of the pyrrolo-pyrrole group of non-steroidal anti-inflammatory drugs (NSAIDs) for ophthalmic use.
I need it about once a week, when Restasis doesn't help.

Prednisolone acetate belongs to the family of medications called corticosteroids and is used for its ability to reduce inflammation in many parts of the body.
When used in an eye drop, this medication is used to treat swelling and itching of the eye. I use it for 2-3 days about every 2 weeks. This works quickly, & is a lifesaver.

Both these drugs are expensive, and the instructions by your Ophthalmologist must be followed to the letter.

I hope this post helps someone.
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Sharon

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Re: Help with EYES: What now?
« Reply #10 on: March 11, 2019, 05:05:59 PM »
vrystatt & dryeye- Thanks for the suggestions! I have not tried Lacrisert or Acular because they are not available where I live (overseas). I'll check if I can perhaps import them.

markt- Thanks! Bandage lenses have never been suggested to me! It's really unbelievable since I've been to top specialists who are head of hospital cornea departments. Scleral lenses I was told don't cover the entire sclera which is disappointing. I now have been offered "semi-scleral" lenses and I'm not sure what the difference is between these and the scleral. In short- confused as how to proceed. Which option would be best?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Gorn

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Re: Help with EYES: What now?
« Reply #11 on: March 12, 2019, 04:30:33 PM »
I don't have anything practical to offer.

My eyes have gotten much drier over the past year, and it sucks, and I just want to send you hugs.

Please let us know if you find something that helps!

Sharon

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Re: Help with EYES: What now?
« Reply #12 on: March 13, 2019, 03:10:52 PM »
Thanks Kevin, I appreciate it.
I'll definitely update if I find something that helps.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

irish

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Re: Help with EYES: What now?
« Reply #13 on: March 13, 2019, 09:34:04 PM »
I was going to mention that the prednisone eye drops are not to be taken open ended or every day. The prednisone will tun the tissues in the eyes if taken every day. The regime of using the prednisone eye drops a couple of days every 2 weeks or so helps reduce the itching and swelling and at the same time prevents damage from the prednisone drops. Per my eye doctor plus you will find this in research of the drops in sjogrens on line. Irish

Tharrell

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Re: Help with EYES: What now?
« Reply #14 on: March 15, 2019, 04:32:39 AM »
I tried the contact lenses for dry eyes. Never again! My eyes were so dry, that it took half a bottle of eye drops for each eye to pry the lenses off my eyes. I also tried the lacriserts. They just produced a big blob that inflammed the bottom of my eye lid and I would have to fish it out at the end of the day. Again, there was not enough moisture to melt the lacricert.
I’m in the same boat with restasis and xiidra. Now I only use GenTeal nighttime ointment at night and TheraTears eye drops during the day. It seems to help. What really helped was the doxycycline eyedrops, but my insurance will only pay for the pills which don’t work. I’m going to ask my eye doctor next month if maybe we can do something like a pulse therapy of steroid eye drops for the inflammation. Longterm steroid eyedrops increases the risk of increasing the eye pressure.
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