Author Topic: Eyes  (Read 647 times)

Sharon

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Eyes
« on: May 16, 2017, 06:27:09 AM »
My eye redness has been my first and most persistent symptom for years now and is just getting worse.
It's so bad it's frightening at times: Bright red eyes with prominent red veins in them which sometimes burn.
I've been to too many eye doctors to count and they don't seem to agree with each other.
Yes, I have SJS and my eye are usually very dry, but moisturizing them with humidifiers and drops don't
alleviate the redness. I've been on Restasis for over a year. Steroidal eye creams (like Maxitrol) help initially
but after a few days the redness returns even if I continue with treatment.
I do not have blepharitis but clean eyelids impeccably on a daily basis in any case.
I avoid all known irritants.
My latest diagnosis from an eye prof. at a hospital clinic who specializes in SJS was "chronic conjunctivitis" (besides the SJS dryness). He suggested I be given a biological drug but it was not approved by my insurance.
I'm at a loss as to how to treat this condition.   :-[
Does anybody here have any experience with this or suggestions?

THANKS!


 
 
« Last Edit: May 16, 2017, 09:50:17 AM 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...

Sooki

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Re: Eyes
« Reply #1 on: May 16, 2017, 06:09:36 PM »
My eyes have been like that a lot. I look like Darth Maul (Star Wars).  I scare small children.  People ask - Does it hurt?  Same results with maxitrol. My Ophth. calls it ocular rosacea, but that doesn't really help.  It is definitely more an inflammation problem than a dryness problem with me.

 For awhile, it seemed like Xiidra was helping (insurance nixed that experiment).  Right now, I'm wearing blue blocker glasses which block out all UV and all blue light below 500 nm, and that seems to be helping a lot right now (I wrote a post on it). It's especially helpful with computer, TV, and cell phone usage.  I'm wearing them all the time I'm awake and I'm soon going to start wearing them less when I'm indoors, etc.

It's so hard to find the right treatment - when they're better, I look at what I've been doing to try to find a trigger. 

I know that stress (especially performance stress - have to do something on time or right), chocolate, caffeine, dry air, fluorescent lights make it worse  At night, I put in Systane nighttime ointment and seal up my eyes with Glad Press n Seal. They come out pretty moist in the morning.

Right now, my eyes are light pink for the first time in almost a year (hooray).  I'm pretty sure the glasses have been helping. Maybe one of the other things above helped.  Maybe it was something else.  It may have been some will o'the wisp random occurrence that drives us all mad trying to make correlations.

I hope you find something that helps.
67 yo, Sjogren's, Lupus, Hashimoto's, Sleep Apnea, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Levoxyl, Xiidra, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, HydroEye, Paleo AIP, fish oil

Sharon

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Re: Eyes
« Reply #2 on: May 17, 2017, 04:10:57 PM »
Thanks Sooki!
You have some very creative ideas.
It really is maddening all these crazy SJS symptoms and complications.
Everything irritates my eyes. Just having them open makes them worse.
I wish I could at least try Xiidra but it's not available where I live yet.
Saw the latest eye doctor today again and he insists that Doxycyline 100mg a day for 3 months is the answer.
He claims the red veins and general redness are from dryness and allergic conjunctivitis and that to top it off
I have a staph eyelid infection which is also contributing to my problem. The Doxycyline is supposed to help the infectious component. No suggestions for the dryness and allergic responses since I supposedly already tried everything available.
I don't know what to think anymore.... :-\
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...

Sooki

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Re: Eyes
« Reply #3 on: May 17, 2017, 05:53:56 PM »
It sounds awful.  Staph infections can be really tenacious.

If your eyes are better in the mornings before you open them, you might try wearing UVEX blue blocking glasses (Amazon) for a few days.  They're fairly cheap and an easy way to rule out UV+blue irritation. 

Do cool packs help? ( I make mine out of corn syrup like Karo in ziplock bags and freeze them)

Sorry, just more suggestions.  I hope you get some relief soon.
67 yo, Sjogren's, Lupus, Hashimoto's, Sleep Apnea, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Levoxyl, Xiidra, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, HydroEye, Paleo AIP, fish oil

Sharon

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Re: Eyes
« Reply #4 on: May 18, 2017, 02:14:53 PM »
Thanks for the suggestions Sooki!
For some reason this eye doctor (out of maybe 10) is the only one that believes I have a staph infection on top of everything else.
He's either a genius or an idiot.
I'd be willing to trial the Doxycyline but it will worsen my photosensitivity.
Cool packs don't help.
I could give the UVEX a try, though even at night with no artifical light my eyes remain red.
Closing them for awhile seems to keep the irritants out which temporarily helps.
Everything seems to irritate them but I can't keep my eyes closed all the time.
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...

A Mom on Spin

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Re: Eyes
« Reply #5 on: May 19, 2017, 12:16:02 PM »
While I never thought of using Snooki's press and seal method (wish I had) I have been using sleeping goggles which keep the moisture in and I'm amazed at how much moisture is in my eyes in the morning.

I also have blue tinted glasses.

Liz
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

Lotus1

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Re: Eyes
« Reply #6 on: May 19, 2017, 04:26:18 PM »
So sorry to hear about your eyes Sharon.

I say to my hubby if only we could grow back new eyes like the sea animal that grows new eyes & legs.
I forget it's name.

I sure hope you find relief soon!!

Lotus1

cccourt1942

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Re: Eyes
« Reply #7 on: May 19, 2017, 06:33:04 PM »
Sharon:  has your ophthalmologist done a culture for the matter in your eye which is diagnosed as staph?   I had what you are describing for the last 4 to 5 years prior to my SjS dx.  It was diagnosed as "allergic conjunctivitis."  It was an incorrect dx.  I was given steroid drops.  I know you have done that before...eyes and orally.  I was allowed the drops for 7 days...and then used sparingly after that (the instructions.) 

After SjS dx, I joined this forum and if my memory serves me correctly it is called Keratoconjunctivitis.  Not all those who write about it have described  like you & I have suffered:  My eyes (both--always) looked as if they were bleeding.  The ophthmal was never concerned.  I worked in the schools, and though the school nurse assured me it was no longer contagious, I refused to work around children with it.  It interrupted the therapy I would do with children for about 7 to 10 days at a time.  I usually didn't have it more than once a year.   Maybe a time or two every 10 months.  The ophthmal is the one who gave me Blink (one for day and one for night).  The night gel sealed my eyes.  I mean SEALED.  I used it two or three nights---and after  I stumbled to the lavatory several times to wash my eyes....I ceased. 

To me, my eyes haven't  improved with the Restasis---based on the fact the night application continues to burn my eyes so badly.  I let the ophthmal direct me to its use.  At the end of the first year on it, he announced my eyes looked almost normal.  I'm one who has hardened lacrimal glands. Have shed no tear in nearly 30 years.  That dry!  Now?  I can feel moisture well up in my eyes during a sad moment.  I'm thrilled.  No tear...but it feels so good to have moisture well into your eyes. 

I vividly recall how long it took the steroid drops to decrease the conjunctivitis. 

btw: I was advised to take Omega 3.  The tiny red lines in my eyes (which I had experienced since my 40s) disappeared.  I am not exaggerating.  I had lifetime friends ask me if i'd had surgery.  It made that much difference.  I learned to live with it.  Some use Co Q 10...and I take a relatively small amount:  690mg per day.  The other result of Restasis ( I attribute it to the eyes) is light sensitivity is gone.  I have sat in my home with shutters closed and no lights on due to sensitivity.  I wore sunglasses indoors for many occasions.  It was miserable.  I live in TX...and sunshine is our weather.  Now?  I have shutters open, lights on, go outside without sunglasses...it's wonderful.  I never dreamed I could do that again in my lifetime.  As I said, don't know if it's the Restasis.  I just think that is it.

At night after putting Restasis in my eyes, and I'm piddling around, I have that same grittiness in one eye, then another....like before dx??!!  I can't count all the people I used to ask to look in my eyes for whatever I tht was in it...a rock or a collection of eyelashes.  Of course--never anything.  My dr told me about 10 minutes after the Restasis application to use my OTC drops---I do this EVERY night.  I've used the same brand of OTC drops since the first eye dr told me I had extremely dry eyes nearly 30 years ago.  I mean...it still comforts my eyes. 

I have accepted I will have these aggravations for the rest of my life--but i'm old and don't have much life yet.  But hey Sharon, took my family to NYC last week---we saw four shows, did all we wanted to do...and then more...and I made it thru without any problems.  I was thrilled and they were surprised.  We used to go every other year..and then after dx of SjS I accptd I couldn't go anymore.  Last year I went with a friend for a week.....she offered to help me.  I ended up in the ER the first night due to costochondritis!!  She was not ready for that.  She took it in stride---but was afraid if I went thru that with two teen age granddaughters--they would be aghast.  But made it thru...and planning to take the older one back in August!  So I am rolling again!  AND YOU WILL TOO!! 

Have a great week end Sharon,
ccc

Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

Sharon

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Re: Eyes
« Reply #8 on: May 20, 2017, 03:40:54 PM »
Liz- Thanks, my eyes are much better during the night when they're closed and for a short while in the morning after they have been closed all night long. What are these sleeping goggles? Sounds like it would be difficult to sleep with goggles on, no?

Lotus- Thanks so much, that would be great if we could "renew" like that. Made me smile.... :)

C3- No culture has been done and none was ever offered. I'm so sick and tired of these docs. They can't seem to do anything right for me! I believe you're correct on the diagnosis, but still have no idea how to treat it. It's chronic with me and the only relief I got at all was with Prednisone 20mg (turned my eyes white!) and the steroid eye cream, but that was very temporary.
Restasis has not helped me at all. I even still have severe photosensitivity after over a year on it.
I take "Omega 3 950" from Solgar (3 capsules a day) and 200mg Ubiquinol (active form of CoQ10).
I would love for those red veins to disappear! What type and dosage of Omega 3 do you take?
I'm really glad to hear you're feeling better. You've suffered long enough!
BTW- what type of therapy did you do in schools?
Doesn't matter our age- quality of life is invaluable at any age, I guess I just have longer to suffer.
I really dream of "rolling again" as well, but I have put so much time and effort into trying to improve my SJS situation but to no avail. I have been trying to get my insurance to agree to a biological drug for half a year now (that should help many of the symptoms), even got a lawyer to help me fight for it, but they continue to refuse. Sigh. I'm so tired of all of this.  :-\
« Last Edit: May 20, 2017, 03:43:03 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...

Pepita933

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Re: Eyes
« Reply #9 on: May 21, 2017, 01:26:27 PM »
I too have the bloodshot eyes that look like have been overindulging for years.  I don't have totally red like I have staph infection.  I have been putting Vaseline in my eyes for years.  I use a children's medicine syringe and use a spoon to shove it into the syringe.  I also use a blindfold at night.  I use a bi-pap machine and have tried to keep the wind from the machine out of my eyes.  For years that was the best time each day in making my eyes feel better.

I had my puntum cauterized maybe 16 years ago and used restasis for many years.  I don't know that it works for me anymore.  I think the gland above my left eye has gotten much smaller, maybe less effective.  I have been using over the counter drops with out preservative during the day.  I read some where if you use eye drops more than 4X a day you should use those without a preservative.  I figure with the way they feel all the time they don't need a preservative!

I wish I had answers for you, I think this is part of the crud with which we deal!
Sjogren's Syndrome, fibromyalgia, achalasia, osteo arthritis, degenerative disc disease, hypo thyroid,(no thyroid),

Sharon

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Re: Eyes
« Reply #10 on: May 21, 2017, 04:04:13 PM »
Thanks Pepita! Tell me more about the Vaseline- how did it help you?
Didn't it make your eyesight blurry or cause an infection?
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...

Pepita933

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Re: Eyes
« Reply #11 on: May 21, 2017, 08:13:16 PM »
The Vaseline or petroleum jelly is the same thing as the ointment sold for $6-7 for the night time eye relief.  I think they have mineral oil in it too.  The purpose is simply to lubricate the eye while you sleep.  Since we all can't keep our eyes shut tight when we sleep the bottom of our eyes in particular dry out the most.  Yes it is blurry, but you are going to sleep!  If you have to do something rub your eyes and blink a few times and you are fine.

A bonus is that it does seem to help with wrinkles!😁  It does play havoc with mascara.

This is just something I figured out 15 or more years ago.  I told an eye doctor and he ewed it, but my long time Rhumatologist was fine with it.  Keep your hands out of it, simply to try and keep bacteria etc from being introduced. 

Your eyes are pretty resistant to infections I guess partly because of the salty nature.  I'm sorry you have had trouble with infections, and may not want to try it.
Sjogren's Syndrome, fibromyalgia, achalasia, osteo arthritis, degenerative disc disease, hypo thyroid,(no thyroid),

Sharon

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Re: Eyes
« Reply #12 on: May 22, 2017, 02:30:33 AM »
Pepita- I don't actually know if I truly have an infection since so many doctors hold differing opinions in my case.
I did use Vaseline on my eyelids in the past and remember my eyes looking quite good in the morning.
Maybe it had seeped through.
I will try to get something similar in a tube to try out.
I wish I could find something to seal my eyes from the environment all day long that wouldn't look odd.

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...

Pepita933

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Re: Eyes
« Reply #13 on: May 22, 2017, 09:06:33 PM »
There are glasses that are for dry eye sufferers.  I can't remember what they are called right now, but they fit around the eye similar to goggles for under water.  When you look at the glasses online the look pretty much like regular glasses I think because they are clear silicone that fits to the glasses and on the skin around your eyes.  There are also wrap around glasses that hug your face that might help as well.  (Try googling glasses for dry eyes)

The sleep goggles are usually marketed for folks with Cpap or bipap machines.  Some DR just recommend underwater goggles.  You can get them and try them out.  Like anything they take some getting used to.  You can make the strap looser so more comfortable to sleep in.
Sjogren's Syndrome, fibromyalgia, achalasia, osteo arthritis, degenerative disc disease, hypo thyroid,(no thyroid),

Sharon

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Re: Eyes
« Reply #14 on: May 23, 2017, 05:47:41 AM »
Thanks Pepita,
I don't want anything that looks "strange" or abnormal since I work with people.
I tried regular goggles to sleep but my skin is so sensitive it left marks that lasted for 2 days,
even after adjusting it.
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...