has anyone tried a higher dose of cyclosporine made by a compounding pharmacy (made in corn oil)? if so, has it helped ? were you able to tolerate it? i have talked with a girl that is has helped a lot-she has sjogrens.. My doc said he will prescribe but warned of the side effects. I am worried my eyes won't be able to tolerate it and that it will mess my tear film up. According to my doc the Restasis has helped me. I guess I am one dry girl!!
Please , if anyone has tried it I would love to know your experience!!
Valene,
I have not tried it, but I will be very interested in hearing about it if you go for it. It does make sense to me that if it is reversing the harm done in our eyes it may work elsewhere.
Cheryl
With Sjogrens, your eyes will not "get better" as sooner or later for most of us, our eyes will continue with the inflammation process on our itty bitty eyelid glands. We can go thru some "better" and "really bad" times, but even for people with regular dry eye, they normally have to continue taking Restasis if they want the benefit. I believe it's about 1/3 of the people are helped by Restasis. I've tried it twice myself, once for 6 weeks and once for 7 months.
Before Restasis was on the market, I had a "potion" of cyclosporin and some oil made by a compounding pharmacy in another state. Everyone knows the name and I'm having a senior moment. Those drops that were made specially for me stung like gasoling on a skunk's bum. I was determined to weather the burning and see if I got any help. After 6 weeks, I gave up on that. I have to say my eyes started after Lasik surgery and I was dx with Sjogrens 7 years after that. My Schirmer's test scores are zero in both eyes.
Your doc will prescribe it, but warned of the side effects. What dd he mention the side effects might be (other than burning)? You said your doc thinks Restasis has helped you? Do you think it has helped you, Cheryl? Actually, that's the more important question. The only thing you can do it try it out. It will take some time to tell if it's what you expect and you'll have to make plans for more prescriptions to be made for you. I would pin my dr down a little bit about this.
Are your eyes sore and irritated now? Do you wake up during the night needing drops or gel?
To Valene: Restasis is only for your eyes, it won't make "elsewhere better."
Hi there, just throwing in what I know. I stopped using Restasis after about 6 mos. kept forgetting to use it. So I figure Hey, if I am forgetting it, it must be working---no pain in eyes.....another 6 mos. they started hurting again. I was so dumb. Off I go to apologize to doc and tell him what I did. Here is what he said, "I" have to take it at least one year, every day, at that time it should be taken away to "see" if it has done the job (I jumped the gun a bit) 50% of folks have to go back on Restasis and the others don't. Take it for what it is worth. But, I love this guy. He was very supportive of me. I also have to take prednisone drops, for about 2 mos. he "thinks" I may have not done "too much damage to my eyes" in the interim.
If, in a year I am one of the unlucky ones.....I would try this compound but perhaps there is a way to lesson the burning...???? I would do a lot of research, talk to folks as you are...and decide. Good luck to you and please let us know how it turns out.....
Bernice? LOLOL @ "stung like gasoline on a skunk's bum".....well said :)
Lucy,
The Restasis has helped me, and I don't have burning when I use it. My dryness was noticeably less after about 3 weeks of use. I still need drops if I wake up during the night, but I seldom need them in the daytime now. I think that sensitivity to sunlight is less, too; I'm anxious to see how I do in the summertime. I wish that everyone could have good results from using it.
Cheryl
Cslly-It was me that said: Those drops that were made specially for me stung like gasoling on a skunk's bum. They were much stronger than the ones they use now. I later used Restasis by prescription and it didn't burn at all.
I should say it didn't help me either, burn or not. It is definitely worth trying though. Now, rather than years ago, there is evidence of a percentage where the Restasis does help folks. I keep reading between 1/3 and 1/2. Reading dry eye boards for a long, long time and this one, that sounds about right. Lucky for the ones it helps. I wonder if they know the percentage of SJS patient it helps. Seems like our dry eyes will keep going as opposed to every day dry eye.
I guess I am confused. I am wondering how long you used the other Restasis, how many times a day you used it, did you use other eye drops during the day for added moisture, etc.
The interesting thing is that I have read that the company that makes Restasis is going to be coming out with a Restasis that is weaker than what we are using now. To me this means that what we are using now is probably as strong as we should be using. It sounds like they will be having the 2 strengths.
The proper way to use Restasis is to use a prednisone (cortisone) drop for 2 weeks prior to starting the Restasis. This info is from my DIL who is an optometrist who is very interested in the treatment of eyes with Sjogrens. Using the prednisone first cuts down on the inflammation in the eye and this in turn decreases the burning that takes place when we start the Restasis. It also helps to put some OTC drops in our eyes about 15 minutes before we use the Restasis and then again 15-20 minutes after the Restasis. It takes time to find a good OTC drop, but I would go with just a simiple drop and not a drop that is thick or cloudy, etc. Just the least amount of ingredients to moisten the eye.
I guess it really would scare the heck out of me to use a drop that is stronger than what is currently on the market. The eyes are so sensitive and can be harmed so easily.
Just remember that it takes a long time to get that inflammation down in the ducts which allows the tears that are made to get into the eyes. It just doesn't happen overnight. Also, the sooner you start with the Restasis the better off you are. If one waits until the damage is really bad in the eyes it can be very hard to get some function back. Don't know thil you try them though. Irish ;D