Hi All,
I understand from my opthalmologist that Restasis is an immunesuppressant and antiinflammatory drug. This will prevent further damage to tear glands and is supposed to be used lifelong in sjogren patients.
So i would like to hear from the sjogren patients on this forum.
1. Since how many years have you been using restasis?
2. If you have stopped using it, please explain why did you stop, how many years ago did you stop using and how has been your dry eyes since?
Thanks
I only used it for a short time. Only weeks. I found it gave me a burning sensation that I didn't like. I have since had punctual plugs and then cauterization done and that has helped my eyes tremendously.
Liz D.
Hi,
How often do you use eyedrops or eye gel?
thanks
Quote from: happylife on April 10, 2018, 12:08:53 AM
1. Since how many years have you been using restasis?
2. If you have stopped using it, please explain why did you stop, how many years ago did you stop using and how has been your dry eyes since?
1. ~5 years
2. I've continued using it.
Restasis has proven quite helpful for me; my Schirmer's test increased noticeably shortly after I started. I'm in a better place today than I was before I started using it and almost never use over the counter eye-drops. I also have not experienced the burning that many others describe (though I do experience some burning with Xiidra). My theory is that it is more helpful the earlier it is used; I started right after my dry eye escalated to needing regular eye drops.
I've been on Restasis for close to 4 years. My lacrimals were atrophied by the time I was diagnosed. I haven't shed a tear in nearly 30 years. After a couple of years on Restasis, at sad moments, real or movie, I do feel fluid pooling in my eyes. I take it twice a day. It burns my eyes EVERY night.....summer or winter.
The ophthal gave me a cortisone eyedrop Rx when he initially Rxed it. I was to use it X amount of time (I think before using the Restasis---can't recall) for a month. That did work with the burning.
At night when my eyes burn after application, I was instructed to use my OTC drops after 10 minutes. For me, this works too. I've NEVER understood why my eyes burn with the drops at night.
I didn't gauge progress on how my eyes "felt", or "looked" or anything to do with me. I took my ophthal's word for it. He stated my eyes looked like new eyes after a year. The first year I started with him, my eyes were so bad, I saw him every three months. Now I see him annually. In addition, I was thankful he didn't tell me my eyes had zero covering (other than the OTC drops I used===and had used for decades.) I was instructed about thirty years ago by eye doctor to use a drop which comes in individual vials. I did.
When you take Hydrochloroquine/Plaquenil, you must have a test performed by the ophthal to continue use of the Hydro/plaq. Someone more informed than I am can explain why.
Again, I am old. I believe I can take the plaquenil drug till I die. I have read concerns of young people who are Rxed it in 30s, early 40s who are concerned. It IS a real concern. Don't dismiss asking about the two drugs.
The first year I took the drug, I filled the Rx by the month---to see if it a) helped and b) I could tolerate it. It was expensive. The last two years ..two FULL years, I have used ONE Rx for a 3 month period in one full year. In my "live people" Sjogren's group, there are two others who experience the exact, same usage. I use it...I use full "drops"...and it just lasts. I think I receive 5 boxes of the drug for a 3 month period. May be 6.
Courtenay
1. I used Restasis for 8 years.
2. I stopped using it when we moved and my backlog of Restasis was damaged by heat in storage.
I didn't miss it when I stopped taking it.
My understanding is that it is only effective about 50% of the time.
Regards, Elaine
I took Restasis for 1-2 years. It worked somewhat for me but was not sufficient. I still had to keep running to the ophthalmologist to get steroid drops too often. Getting top and bottom punctal plugs made a big difference. With the plugs, I stopped using the Restasis and cut down on frequency of use of OTC drops, too.
For those of you who say Restasis stings, try keeping it in the refrigerator. I found that reduced or eliminated stinging and made the med more tolerable.
Following up on cccourt's comment re: eye exams while on plaquenil, that is to detect plaaquenil toxicity which is damage to the retina. It's very important to monitor eyes while on plaquenil and make sure your dosage is appropriate / within current guidelines.
I?ve never used restasis. I have Sj?gren?s but since I?ve been on plaquenil for my RA for years before my Sj?gren?s diagnosis I haven?t had a horrible time with my eyes while on the med. I get by with just artificial tears.
Hmmm, I never heard of Restasis being described as an immunosuppressant and wonder if that is correct.
I have used it for probably 3-4 years and found it to be quite helpful. I had not cried a tear in over a year and missed it more than I thought. I also have punctal plugs.
FYI dry eye can be the result of various causes, lack of sufficient tear production (which has different causes), less tear film (which means your eyes don't hold onto the tears that are produced, etc. It is good to ask your doctor why your eyes are dry because treatments can vary based on cause or causes.
Restasis contains a very small dose of Cyclosporine, which is an immunosuppressant used for preventing organ transplant rejection and to treat various autoimmune diseases like RA, psoriasis, and Crohn's. It works by lowering activity of T-cells. Wikipedia link (https://en.wikipedia.org/wiki/Ciclosporin) for those interested.
I've never used it. I was diagnosed 10 years ago.
I found great success with punctal plugs which have been in place about 2 or 3 years. They are the semi-permanent.
I used Restasis for 4 to 6 months with no help to my dry eyes.
What did help was
Lower tear ducts cauterized shut in 2010
Began Xiidra eye drops nearly 2 years ago...use it 2 x a day.
I rarely have to use OTC drops in my eyes....I can sleep right through the night too.
Shelly
I used Restasis over a 3 year period. I never really saw a big difference in how my eyes felt, and it continually burned my eyes. When I finally gave up on it, I went to a different eye doctor, cause my regular doctor was out of the office that day. She put me on Xiidra and within days, my eyes felt so much better. I use the Xiidra twice a day, and at bedtime I use Refresh PM which is a thick ointment that coats my eyes. Both of these regimens have been working..so I will stick with them.
Quote from: cccourt1942 on April 10, 2018, 08:06:31 AM
I haven't shed a tear in nearly 30 years. After a couple of years on Restasis, at sad moments, real or movie, I do feel fluid pooling in my eyes. I take it twice a day. It burns my eyes EVERY night.....summer or winter.
Courtenay
Goodness! In that time has any of your OD/MD types suggested Scleral or PROSE lenses? They essentially create a prosthetic ocular environment with a sterile saline solution that is held against your eyes by the actual lenses (doing for your eye what your lacrimal gland cannot). Granted some of us need them more than others... The OD at Johns Hopkins highly recommended those of us with profound dry-eye go this route, and that "we don't have to suffer." Any who, just curious if anyone has turned you on to trying those. My ophthalmologist is trying to see how well they can get me using the Restasis/Ointment regimen before entertaining that... it is always nice to know there are other options that can help! That said... most OD/MD's will tell you, au natural (no lenses) is the best route if your eyes cooperate using conventional treatment.
Some people have lots of burning and the protocol talked about on this forum is that using a preservative free eye drop to moisturize eye 15 ton 20 minutes before and 20 min after the Restasis can help a lot. You might want to check into this. Good luck. Irish
Using for over 2 years.
Doesn't seem to help much (if at all?) but I was told to continue using it.
I tried it for a month or so, but it made my eyes burn worse so I quit.
I used it for about a year and it seemed to help a little. I stopped for awhile because of the price and then began again. When Xiidra came out, I had such good results with it, that I stopped the Restasis.
I have used Restasis drops since 2011 so about 7 years.
I have no problems with it and it has helped me tremendously.
I use it twice a day and it seems to help my dryness. I think I have some blepharitis though b/c my eyelids are often a little red. They say it's best to put a warm washcloth on your eyelids but I just don't do that.
I've been using Restasis for 2 years and it has made a huge difference in my eye discomfort. I have no complaints with it and can endure the mild, transitory burning when I use the drops twice a day. I would be in WAY worse shape if I didn't have Restasis.
I have used Restasis for about 8 years. It started working for me during the 3rd week. I could be their (very old) poster child! After using Restasis for several months, I saw my optometrist for a vision check-up. He said that it was the first time he'd ever seen my eyes "glisten" - and I had been his patient for over 30 years.
Using it for about 3-4 years now. Working well for me.
I was using Restasis til Jan of this year. I used it for several years, helped a great deal. However, my insurance company decided it wasn't going to cover it any longer and had me try another type of drop. Long and short of it, way too expensive the insurance wouldn't cover it, $600 YIKES! No thanks! I'm now using over the counter again and am doing fine.
I've been using Restasis for a little over 3 years. I also have plugs in all year ducts. I honestly don't see much difference in my tear production. There's been a few times when I've stopped it. Not sure if I saw a difference or not. In the last few weeks, I've taken I've religiously put in my 2 doses per day, as I've been flaring and I can't say it's been helping. Maybe a little.
I have used since 2007. The burning was welcomed by me because it produced watering of my eyes.My eyes have improved immensely!!!
Anna
Used it for about a half a year, and it seemed like it was helping me. I always kept it in the refrigerator to minimize the initial stinging sensation.
Unfortunately my insurance changed and the new insurance would no longer cover it.
Hello, I don't use restasis ,although my eyes feel very dry (I do get very blurry vision) I have been getting by with systanes gel eye drops which I have found work the best for me and I occasionally use systanes preservatives free drops that come in individual vials (similar to what a breathing treatment comes in). I do however have a friend who uses restasis or used to anyways and she even complained that they made her eyes burn.
I was diagnosed with "dry eye" about 40 years ago and was prescribed Restasis in March. I used it until a week ago - I scratched my eye and the Restasis seemed to turn this minor scratch into a major pain! I stopped using it and my eye is almost fully healing. I've just discovered Retaine MGD drops by OcuSoft. They're great, they contain mineral oil without causing blurring. I only have one eye. I don't know if I'll go back to the Restasis, I probably will. But the doctor told me it's toxic to the cornea, maybe that explains why it made my little scratch so bad.
Hi Polly
Sorry to hear what you are going through.
You have had dry eyes for 40 years?
Has your Doctor confirmed that you have sjogrens?
Do share your other sjogren symptoms and also since how many years of each symptom.
Thanks
See Cheryl's post above:
I've used Restasis for nearly 4 years. It STILL burns my eyes....night application only. I cannot figure that out. I don't work outside.
When it was Rxed, the ophthal gave me a rather strong cortisone eyedrop BEFORE I used the Restasis. I think I used that about 10 minutes before...then the Restasis. It was wonderful. However--I could only use it for a month---with the caveat I could use it periodically. Dangerous to use this stuff frequently. Anyway....re the message to see Cheryl's post above: After one year, my ophthal was stunned at the overall improvement of my eyes' surfaces. I had not shed a tear in 25 years by that time...and I had used Alcon "individual" Vial drops (no longer avbl) all those years after an eye dr commented on my dry eyes. (he actually asked then: don't your eyes hurt?) ha, ha. Of course they did.
What I tell people is what Cheryl said (well not technically) ==let your ophthal tell you if it's working. My ophthal tells me now to use my OTC (I use Systane individual vials (no preservatives) about ten minutes after I use the restasis (at night when it burns). If I am going thru prolonged burning I will use the prednisone drops. He advised no more than once a month for no more than a few days at a time. The last 3 years before my dx of SjS I was treated with prednisone drops for what the (other) ophthal dxed as "allergic conjunctivitis". My eyes looked like they were bleeding. They weren't, but it was frightening looking. I was still working and would not go to work as I couldn't believe it wasn't contagious. She was right about that. Just not what she said. She NEVER suggested doing the tear test, or anything. Because i'd used those drops freely for three years, with no warnings, I am more cautious about using them now. Usually the OTC drops I use, the burning will subside.
One more thing about Restasis: My dr prescribes it in 3 month doses . I receive 6 boxes. For the last two years ONE Rx for 3 months has lasted me a whole year. I do not recall the first two years. With insurance, my cost is 250.00 for a three month supply. You can easily see the cost is not a factor for me with my insurance. I believe I have touched my eye ball twice (thus throwing a vial away) twice in all that time. I have zero idea how this can last this long. But...it does for me.
ccc
Quote from: happylife on June 20, 2018, 08:37:25 PM
You have had dry eyes for 40 years?
Yes, when I was in my twenties an optometrist told me I had dry eyes and scarred corneas. He said the dry eye was "because you're getting older"! I think I was around 23-25. The "scarred corneas" I've never heard about again (and I asked!) but the dry eye was repeated by every doctor which is why I'm surprised I never got Restasis until now.
Quote from: happylife
Has your Doctor confirmed that you have sjogrens?
He says I have it but when I asked about having some specific test for it, he said there was no sense in it because there was nothing he could do to treat it. I have RA/PsA and I'd been through all the treatments available to me (Enbrel to Rituxan).
I have had joint pain on and off for most of my life. In 1987 the pain became unbearable and I was so stiff I couldn't move, this happened suddenly. I went to a rheumatologist who did the blood panel and said that was negative so I didn't have RA, therefore I had fibromyalgia! I argued that I didn't, I had pain in my joints, not fibro pain, but fibro was in vogue then so that was that and my life was ruined. In 2011 my knees blew up and I had to go to a rheumatologist who diagnosed me by exam and x-rays. I've been sero-negative all along but I haven't had all the tests in a few years.
I've had strange times of fatigue throughout my life but the past few years it's gotten debilitating and lasts for months. I kept telling my rheum about it and he never said it was Sjogren's (I only knew about the dry mouth/eyes, Sjogren's fatigue is a new discovery for me), he said he couldn't explain it.
I never really noticed the dry mouth until this March when it went totally dry one day and stayed that way. I mark that as my first Sjogren's flare. I got a pred taper for it but pred keeps me awake (although like a zombie) so it seemed like it was going to help for the first two days and then I think I went back into flare mode from lack of sleep. So here I am, tired and miserable.
Nice to meet you! ;)
I have been using it for about 6 years now with no problems. I was worried it would burn my eyes and the first few times I used it, it did a little bit for just a few minutes. It wasn't a very strong sensation. Now, if I forget and don't use it for a day, I notice a difference.