Just Diagnosed and avoiding extreme (and expensive) treatment. Advice?

[suzeaa]

Hi, my name is Susan and I live in New Hampshire.

I have Sjogrens disease and have had dry eyes for quite awhile, and was just using Systane, which didn't help much. Had to leave work first thing yesterday morning because the Systane made my eyes so blurry I couldn't read the computer (essential in my job). Spent over 2 hours trying to find an eye doctor who could take me that day (my previous guy retired and I haven't been in 3 years...).

So, he did a fluorescent test and said my right eye was severely dry and my left eye was very severely dry. Both had surface damage, but the left one has lost sight due to the surface damage (I knew that but was hoping it would improve on it's own -- I know, dumb. I just HATE going to the doctor's from bad experiences previously).

He wants to start me right off on a steroid drop, and antibiotic nighttime gel, and Restasis. At the Pharmacy, I got the antibiotic no problem, but the other 2 are not covered by my insurance and the price was nearly double my monthly rent!!! I just didn't have it. The steroid drops alone were $260 for only 15 days supply. I live paycheck to paycheck and just don't have that kind of money.

He also wants to do the plugs on my lower lids in three weeks. Ouch!! I'll leave that as a last resort.

I just think he's jumping the gun and didn't even want to discuss other options to try first. I'm going to use what he gave me for free and then switch to something else I can afford.

I realize I have a serious problem I need to take care of to protect my eyes (and be able to do my job) and I certainly will, but I just CAN'T afford his way for treatment and I've never tried anything other than the Systane -- doesn't make sense to me to at least not TRY other options first.

So, I am going to try the following:

GenTeal Severe Eye Gel (at night)
Oasis Tears Plus during the day
OCuSoft Lid Foaming Scrub
Warm Compresses
Castor Oil rubbed into top of eyelids at night (reduces inflammation and softens) - a big hit on the holistic dry eye site -- you have to get a pure, cold pressed brand with no Hexene or Parabens at the vitamin store or online
KriaXanthin and other nutrients
reduced computer use at home
always use sunglasses outside
and I already drink loads of filtered water.

Anyone have any other suggestions? Used the antibiotic gel last night and this morning feel much better already. I'm kind of stunned I waited so long and just suffered when it was really so severe. I'm thrilled to find this site. Looking forward to some relief!!!

[daphane]

Sjrogens and SLK

Hi and just want to say I feel for you. Diagnosed with Sjrogens myself and SLK. About 4 years ago I started by having eye discomfort and it kept getting worse, could not hardly keep my eyes open. After two years of searching finallly found a doctor. He would not even see me until I stopped all eye drops that had been given. After 5 min of him looking at my eyes he said I have SLK. He stated that all the eye drops I was on (steriods and others) were hurting my condition. He told me to use restasis and put contacts in my eyes. I felt relief right away with the contacts. Two years later I feel they are getting worse, I can keep them opened but I can feel them swelling inside.

[daphane]

Hi and just want to say I feel for you. Diagnosed with Sjrogens myself and SLK. About 4 years ago I started by having eye discomfort and it kept getting worse, could not hardly keep my eyes open. After two years of searching finallly found a doctor. He would not even see me until I stopped all eye drops that had been given. After 5 min of him looking at my eyes he said I have SLK. He stated that all the eye drops I was on (steriods and others) were hurting my condition. He told me to use restasis and put contacts in my eyes. I felt relief right away with the contacts. Two years later I feel they are getting worse, I can keep them opened but I can feel them swelling inside.

Have you heard of SLK

[farmgirl]

Hi suzeaa:

Welcome to the forum. Sorry that you have to be here but happy that you have decided to take this condition seriously, with Sjogrens this will be a lifelong battle. Remember 'no corneas, no vision'

I have Sjogren's. Here is what I have done that has 'healed' the cornea surface and got me to a place of comfort.

1. Cauterized the upper puncta have plugs in the lowers (this has helped a lot) Tried upper plugs didn't help, tried lowers didn't help, tried both, bingo it helped. I started off with temporary dissolving ones first to see if it would help, it did. They are one of the better things I have done/tried I highly recommend this course of action. No 'ouch' for plugs you don't feel them going in, just make sure if you get them that he gives you removable ones as the ones in the duct can cause problems and are not removable. This should be a first resort, not your last.

2.Autologous eye serum. If based on cost I had to choose between restatsis and serum I would definitely go for the serum. Since starting on the serum in April my corneas have always checked out healthy (never before). Serum is made from your own blood plasma at a compounding pharmacy or lab and the biggest challenge is to find one in your area that does eye serum. The plasma has the nutrients in it that nourish and heals the cornea rather than just keeping it moist. I use 50% which is working for me although it is my understanding that any lower percentage (like 20%) is not strong enough to do to much good. There are some on this forum who use 75-100% but that would of course be more costly.

3. Moisture retaining goggles (I prefer Wiley X but everyone has to try as they need to fit your face well). There are many types available and this site is a good source of info on those. I have a pair made up in sunglasses as dark as I can get and would not want to live without them.

4. Restasis - this is NOT a panacea but helped enough that I keep using it (I have a drug plan). If you do use it the directions say to use one vial once and then discard - I say 'bullpucky'. I use the whole darned thing to the last drop and one package will then last about 3 months, not one month. Just be careful not to contaminate it by touching the end. The lid can be carefully replaced to keep the contents sterile and keeping it in the fridge will help as well. Dry eyes are more susceptible to infection. From what I have read Sjogrens is one of the conditions that does tend to respond favorably to Restasis so it might be worth a try if it fits into the budget. The problem with Restasis is that a 'try' is 2-6 months so be prepared to stay in it for the long haul.

5. Non preserved eye drops as needed, I use systane but everyone seems to have their preference.

6. Onyix goggles for nighttime - you can half and fold a small dampened gauze to insert inside and tighten them up enough to apply enough gentle pressure to keep the eye from opening at night if need be.

7. Good quality fish oils 4/day

8. I stay away from gels and oils as they irritate my eyes and MGD is not one of my problems it is tear quantity that I have a problem with not tear quality. The scrubs, compresses and castor oil are more for MGD or other conditions related to meibomian gland production, Sjogrens is a lacrimal gland problem. You can have both together but if he wasn't recommending that as a treatment then I would think that MGD is not one of your problems.

9. I turn down the brightness on the computer and installed a program called F.lux to change the 'temperature' of the light on the computer. Computers are the worst thing for irritating my eyes.

With all of this I have healthy eyes which bother me about 1/4 of what they used to. I am currently working on, I can't actually call it curing my Sjogren's because the experts say there is NO cure for Sjogren's so lets just call it a permanent remission since I wouldn't want to prove the 'experts' wrong. I am making progress and hope to be one of Rebecca's 'Dry Eye Success Stories' one of these days.

To you suzeaa I say work HARD at getting your eyes healthy they are a vital organ and dry eye can be VERY serious. I can't say enough good things about autologus eye serum it has been a God send for me and I will never be without it as long as my eyes are an issue.

You may need the steroids and antibiotics in the short term but once the crisis has passed you will need a different plan of attack. I hope my experience can help you get those eyes healthy and KEEP them healthy...cheers F/G

[bakunin]

Moisture Chamber Glasses can be a less expensive option to keep functional.

[suzeaa]

Thanks for your advice, Farmgirl. I'm going to increase my eye insurance this October and it kicks in January 1st. Hopefully it will cover the Restasis.

I know I have to keep on top of this and heal my eyes. Going to do research now on the serum. I also read the front page of this site about different options and choosing a doctor.

Thanks again!

[daphane]

If you get on restasis website and sign up for their card you can save money that way. They will send you a credit card and everytime you purchase restasis they will put a certain amount back on your card. You have to take the card to the pharmacy with you so they can run it through. I buy 3 month supply and it cost 40 from my insurance and restasis puts 45 on my card. It great but would rather not have to have it at all

[poppy]

I don't know if you can do this where you live but here you can get generic "restasis" made up at a compounding pharmacy and it's way cheaper than restasis.

I also can't understand why your steroid drops were so expensive. I don't know what brand/type they were but $260 for a 15 day supply is absolutely outrageous. Ask the doctor to switch you to another type of steroid, you should be able to get preserved generic brand steroid drops for a fraction of the price. The doc may be prescribing you the "best" unpreserved brand steroids without understanding that cost is an issue for you. Next time you see him let him know you are happy that he is trying to offer you the all of the "best" treatments to help you but because of your financial situation you want to start with the least expensive options.

[suzeaa]

That's great advice. Funny, but when he found out my insurance didn't cover the 2 things he prescribed, he just had his assistant leave a voice mail on my phone telling me I could switch to Oasis Tears Plus. Maybe he doesn't get any 'credit' if I use the generic brands?? I've only been on a prescription once about 10 years ago for shingles, so... Anyway, the Restasis makes my eyes sting all day.