I was having grit & glass feeling in my eyes....more than usual. I let it go for a week and finally surrendered to my fate of calling my eye doc. He is so nice...and cute! So I went in today but he didn't look his happy usual self coming in to my room.....we put the yellow numbing drops in and he shined the blue light on them, and did a pressure check. He wasn't happy....I knew something was wrong. Restasis, I have been on for 8 months. My eyes & throat are more noticably drier than ever. I can feel the dryness. He wasn't surprised at my descriptions, considering what he found.....
He explained, Amy it takes 10-15 seconds for the test to manifest normally. Borderline dry eye is 5-10 seconds. Your dry eye is so severe that it falls off immediately and evaporates instantly. It doesn't stay, it evaporates as soon as it is touched.
He gave me trials of Systane Restorative and Refresh. Gave me coupons. He said I have never seen a case as bad as this ever in my years of practice. I want you to stay on Restasis, even though Restasis can't work well if the tears leave the surface of the eye too quickly. Something is better than nothing. Immunology...Amy, there's a serious immune issue here. Maybe bigger than Sjogren's. The Systane will work on the oil layer more than Refresh will.
I am torn up over this. And from what I understand, Methotrexate is supposed to help dry eye. I am clueless and just wanna cry.
My heart goes out to you SjoAmy... I don't know how long it has taken to get so bad but just hang in there and if you have someone you can call and hear their voice of warmth and kindness maybe it will help. I have had a major slow decline and I am finally asking people to please lift me up with their wishes. I know with surgery coming soon it will get worst before it gets better but I have to hold on to hope that it will get better.
Oh, Amy, I'm so sorry :( Does he think the plasma drops may help? My eye dr. mentioned those and said it seems to work in some patients for whom nothing else has worked ... it's something I may consider down the road.
(((HUGS)))
Amy I'm so sorry! You've been through so much and you just keep plugging along... I'm sorry this is hitting you now.
Listen, I've never had any damage from my eyes being too dry. My eye doc had always said I had dry eyes, but would not necessarily Dx me with SjS because they were just "fairly dry eyes" However, I saw her a few months ago and she said it was time to begin using the Refresh gel drops at the very least, 4 Xs a day (was just using them as I felt the need to).
She said my eyes were bad at that point and if she needed to Rx Restasis, she would need to have it documented that I'd been using the drops and that they didn't work. So I began using them at least 4 Xs a day. When I went to see her for the shingles she said "Well, the good news is, your dry eyes look great! They're not nearly as dry as the last time you were here."
It could be that the plaq is beginning to work, but truly, the drops used regularly, was all that changed. I recently switched to GenTeal lubricant gel, because the Refresh weren't cutting it to relieve the pain. I like them a lot. If you just drop a wee bit in at a time, but more frequently, you can judge how much you're getting in there and they don't run down your face. I had that problem with the Refresh, as it would come out in huge amounts and soak my face.
Maybe the drops will do something big for you. In the mean time I'll be praying for you. Again, so sorry.
Angel, I'm praying for you as well. Feel free to PM me if you need an ear (or eye, as the case may be =)).
He mentioned about steroid drops to me.....he says they are only good for short term and are a double edged sword because if used often enough they stop working. So we are holding off on steroid drops.
I don't know what the plasma drops are......unless they are the steroid drops he talked about.
Oh, I'm so sorry to read this. You have my sympathy although my eye problems are nowhere near as severe as yours. I have found using Systane Balance is helpful because of the oil issue but haven't tried the Restore. I use it some of the time and other drops if my eyes seem too oily. I've only been on Restasis for about 6 weeks but am seeing some improvement. I hope it is helping you at least a little. I hope you find some relief very soon.
I share your pain. My BUT score is zero also. This is typically Meibomian (oil gland, i.e. quality) in origin rather than lacrimal (tear duct, i.e. quantity).
Products such as Restasis designed to increase tear production or drops designed to wet the eye may work in the very short term but make things worse in the long term because what little oil remains gets washed away.
After trying dozens of products I don't currently use anything because everything I tried just made things worse. You're not me, everyone's sicca seems to be a little different, and what doesn't work for me may do wonders for you.
What has been very helpful is small changes in routine.
Avoiding open car windows and vents blowing into the face.
Making sure ventilation and heating or cooling systems at home or work are not pointed directly your way.
Wearing glasses in the wind.
Wearing prescription glasses if you need them even if the need is minor.
Taking frequent breaks from the computer screen because studies have shown when staring at a monitor people only blink a fraction of the time they normally do.
Avoid exposure to airborne dust and chemicals when possible.
Avoid using chlorinated pools.
These things help me a lot. With a little observation you may discover what your triggers are and how to avoid them.
Sometimes one can get a lot of improvement just by a series of very minor changes and once used to them, they may barely be noticed at all. Even then our eyes may still be dry but dry is much better than dry as dust!
It is my first 24 hours using Systane Balance. The very first time I put them in it hurt. But that happens with all my drops. Every time I used them it got better......like peptol bismo, it got better with time!
I actually did cry today! Thank Systane & Restasis. The punctal plugs are still there....doc said yesterday. I asked him to check, with the increase in symptoms, I thought maybe that they fell out. Nope.
I think it is the oil dysfunction.
I have a TBUT of 2 seconds, so I know the feeling. When my eyes are dry, it seems nothing helps for more than 1 minute.
I agree with the changes gphx mentions, ceiling fans and car vents are the enemy. Be proactive about reducing exposure if your eyes are feeling dry. Even a light breeze. Try the wrap around sunglasses, they help.
The serum drops are your own blood (autologous means self) mixed with saline. The different variations are 20, 50 and 100% blood. I did try 50% autologous serum eye drops and I love them. I think it's because they have naturally occurring lipids making them last way longer in my eyes than all artificial tears. And over time my eyes feel better for longer. The lab pulls 100 ml of blood, removes red blood cells, ships the remaining serum to a compounding pharmacy, they mix blood with saline, place in small dropper bottles, freeze and ship them to me. I thaw one per week ad use the drops 4x per day. I get about 12 bottles, and the cost is $270 (includes overnight shipping). Last 3 plus months.
I hope you find something that works soon!
Quote from: litliwlowa on November 08, 2013, 03:36:48 PMOne bright note in all this - your eye doc is CUTE! ;)
I noticed that, too. And even if it's not nice, I'm a bit jealous because my eye doc seems a bit sharp and I find her scary. And I should go see her again because my eyes too are very, very dry these days despite all the drops I squirt into them and also it's been a year I was there, so I have to have the Plaquenil/Oxiklorin check-up. Sigh.
Me too wants a cute eye doc!!! >:(
Amy, hoping you'll find some relief for your eyes, soon.
So sorry SjoAmy, we all live knowing this is a progressive disease, but when it happens it's still a shock and like experience a death.
Agree with some of the commemts and would add taking care about being in artificial light if you can. I can't take flourescent lighting or eve bright LEDS.
I was looking at vitamins for eyes recently and plan to ask my opthamologist if they would help. He has suggsested fish oil, but I can't take much of it because I have anemia and it can thin the blood even further.
Prayers and hugs for you.
Quote from: SjoAmy on November 08, 2013, 06:10:04 AM
He mentioned about steroid drops to me.....he says they are only good for short term and are a double edged sword because if used often enough they stop working. So we are holding off on steroid drops.
I don't know what the plasma drops are......unless they are the steroid drops he talked about.
My doctor said at the onset of my Sjogren's that she'd never seen a surface so dry. Gravel is what she called it. Compared to my mouth, I could have lived with my eyes at the time. She sent me to a specialist who gave me dexamethozone steroid eye drops for a month. They stopped the attack and my eyes have returned to very healthy as long as I'm on plaquinel, salagen and restates. Without them I start going backward.
I would try it.
That's just my opinion. hugs.
eta: what about the opthamalic ointment that is thick like vaseline? I was doing that several times a day. It doesn't fix anything but if anything helps. Don't forget your cod liver oil and fish oil.
I have 2 air purifiers .....no humidifier tho....what kind do you use? Warm air? Cool air?
I have wrap around sunglasses and will likely have to go back to them.
In regards to Plaquenil, it was stopped this past April, due to damage it caused to my visual field, in my Plaquenil Visual Field Test. Optamology told Rheumatologist what to do: STOP PLAQUENIL!
I am dammed if I do and dammed if I don't.
Stopped Plq in April, began Cellcept in May, ended Cellcept in mid June, started Mtx in September.
On another note: saw the neuro-psych today.......they are afraid that I have dementia......can't test until January due to insurance.
Amy, I'm sorry you are suffering so. I was on Restasis last year for a few months. It made my eyes worse and dryer. I felt much better after I quit using it. Maybe take a break from it for a while and see if you feel better. Good luck.
Amy,
This link talks about the autologous eye drops(plasma) what they are, and where this doctor orders them through. I don't know much about them.
Nancy
http://www.sjogrensforum.com/from-the-doctor/autologous-eye-serum-for-very-dry-eye/
http://www.ncbi.nlm.nih.gov/pubmed/23982997
Quote from: Jenny on November 09, 2013, 04:15:29 AM
Amy, I'm sorry you are suffering so. I was on Restasis last year for a few months. It made my eyes worse and dryer. I felt much better after I quit using it. Maybe take a break from it for a while and see if you feel better. Good luck.
As long as I had Plaquenil, Restasis was good. Stopped Plaquenil....it finally damaged my eyes....and Restasis didn't work quite the same. Now I think I have MGD, as I have evaporative dry eye...and the Systane drops give me the relief I have long looked for! I've learned that the drops don't have to burn to be effective! You were right...Restasis was drying out my dry eye.