I had a question. I was diagnosed with Sjogren's almost a year ago and started treatment quickly. I was already on Plaquenil and leflunomide for PsA, and added in restasis for my eyes and evoxac. In the spring I had all 4 tear ducts plugged.
In the last few weeks, I've been having my standard fall flare, including joint inflammation, fatigue, and increased dryness this time. I had a few periods of a few days where my eyes were super dry and irritated, and the lubricating drops never seem to work. I've been using an ointment at night. I was on a steroid dose pack that I finished up a week ago.
Where does that leave me now? On Monday I started having extreme dryness again in my eyes, and really hoped that it would just last a day or two, but this one stuck around. I went to the eye doctor yesterday, not my usual one, and got steroid eye drops. I'm wondering though. . . . I don't think the restasis is working, and it's a pretty expensive medication. Has anyone stopped using restasis? Did you find that it was actually working after stopping it? My eye doctor had mentioned that we wouldn't take anything away, just keep adding to it.
Great post! I think others will really benefit from the discussion.
I tried restasis on a couple of different occasions over the years and discontinued it both times. It seemed to irritate my eyes and I could tell little improvement in the dryness. I use Systane ultra without preservatives day and night. The past few weeks my eyes have given me fits. Inflammation, infections, terrible dryness despite using drops, steroid drops, antibiotic drops.
My doctor finally said that I was suffering from Meibomian Gland Dysfunction, which is not uncommon with Sjogren’s. These glands, which secret an oily substance to help keep the tear film from evaporating, were completely stopped up. So the drops were evaporating almost as fast as I put them in. He gave me instructions for cleansing my eyelids and using most heat pads twice a day to keep the glands from stopping up. In addition, he gave me samples of SYstane Balance. This was less than a week ago and my eyes have completely cleared up. Just something to consider.
It sounds like it’s time to have a big chat w/ my eye doctor. With or without plugs, the restasis isn’t working. I remember seeing that restasis isn’t for use if your tear ducts are plugged.
My eye doctor has me doing daily washing, and I’ve begun doing warm compresses. I already take flaxseed oil supplements. If we can’t come up with a better plan,something will need to change.
Hi Stoney, sorry to hear how bad things have gotten for your eyes. No, Ristasis will not help. and yes, it is very expensive. But I have come to find, through trial and error, that gel drops work best for sjogrens. Also, staying out of wind, which can be hard where I live. Sleeping with a sleep mask helps, and running a humidifier at night when I sleep. My eyes tend to blurr a lot though, making reading, watching tv, crocheting, just things I enjoy, very difficult. but adding the gel helps, so it is just something we have to be on top of. I keep getting told to drink, drink, drink, I always have. For me, this has never made any difference. Your road is just beginning, hopefully coming here for support and answers will help. God bless.
Hi, I have been using restasis for a year now and it only takes one day without it and my eyes start to swell.. I have been using Refresh Liquigel during the day and ointment at night. I have had great success with the restasis. I hope you get some relief soon because dry eyes are not fun!
Take care everyone!
Thank you for the suggestion re: sipping instead of gulping. When I get very dry in the mouth....I tend to chug a lug water. I did not know that was counterproductive.
Hello sounds like you and I are going through the exact same thing, restasis only work for the first few minutes after I put it in. However I did have plugs put in and they work to some point but some point come out. Has your specialist explained that happens and you might not even know it, except that your symptoms will return, so if you haven't had them check I would start there. So I hope you start feeling better ,good luck Michelle
Thanks Michelle. I did have the plugs checked. They are all still in. That was the first thing that was checked. I knew they were still in because with them I feel tears in my eyes, albeit poor quality tears with a tear film that breaks up almost immediately.
Mine are permanent plugs. I was told they will last for years. They've been in since the spring. My understanding is that they are most likely fall out on their own in the first few weeks, and mine are definitely in. As I said, all 4 tear ducts are plugged.
Your problem sounds familiar. I have all four puncta plugged and use drops regularly. Some days my eyes feel fine, but other days the pain is almost unbearable. Even though my puncta are plugged, my ophthalmologist recommended that I stay on Restasis. I didn't think it helped much, and it really burned -- it was actually painful to go outside after I used the Restasis -- so I stopped on my own. My current ophthalmologist recommended that I start using it again after my corneas are healed. As nothing seems to help much, I am planning on trying scleral lenses. They're kind of expensive, but I'm desperate. I learned about the scleral lenses from talking to other Sjogies -- it's not something my doctor brought up, but he was very supportive when I mentioned it.
I doubt this is very reassuring -- but you will have some good days! Hang in there.
Yes yes yes...I can relate to your note. I was told to stop restasis the same day they placed tear plugs in
The night pm salves have helped me out the best. I also use a warm cloth over the eyelids. It helps soothe and gives comfort. I however opted to not re- insert tear plugs when I learned they had falled out. A shock to hear this.
Everyday we must do our 'TO DO' list over and over. You have my sympathy . What is your steroid medication?
I'm on the steroid drops temporarily - Lotemax.
yes yes yes...I take five Salagen a day...that is a 24 hour day not just in day light of the 12 hours...(many think its just when we are up...not taking into consideration our down sleep time ??? the five Salagen is the hiughest amount prescribed when having radiation...so when I was diagnosed with NHL I could not have the radiation.
I could not understand why all the blood tests prior doctors appts and the kidneys and liver along with our immune system provided thos reports..Stay close to the doctor who prescribed your Sjogrens.
Amazing the meds these days....Stay strong and know you are not alone in this venture...Your entry on this site has helped so many with your contribution. And by the way, journal when you can on what and how you are doing plus the meds...I can honestly tell you what works one month may not the next and so when you have a not so good week, you can look back to see what was working when you had a great week...Over the last 6 years I am amazed at looking back and my issues. Keep looking up we are all here with you. lj
I'm going through eye troubles too. My eyes get irritated, red, and painful. This has been happening for years. I told my regular eye dr. about a few years ago and she said she would have to see me when it was happening to tell me what was going on. Scheduling an appointment to coincide with the issues was a nightmare. I pretty much accepted that I just had to live with it. All sumer I kept feeling like my vision was changing but I didn't want to over react. Then about 3 weeks ago I tested each eye separately and I immediately knew something was wrong. I made an emergency appointment with a dr close to my office the next day.
She found that I had a large dry patch right in the middle of my cornea and there was a big scratch there too. It was so bad that she couldn't see past it to see if anything else was wrong.
I've been using antibiotic drops and steroid drops 4 times a day plus moisture drops as many times as I can stand it. The scratch is gone, the main aberration is gone, and my eyesight has improved from 20/80 to 20/25. But some of the pain has come back and last week the dr said a new aberration has developed. She doesn't think it's from sleeping with my eyes partially open (which is fairly common) because the aberration is on the upper part of my eye instead of the lower part. She doesn't think there are any other problems with my eye, now that she can see into it.
I'm following up with an optamologist next week instead of an optometrist.
Is this what ya'll experience from the dryness?
Hello Kaz ! You are so right on top of eye issues.
My erosion says it all. And today is just one of those difficult uncomfortable mornings. MY sight is like a dirty frosted windshield with mud spots. I can tell winter is here with the furnaces running along with the chilly temps and wind. urgh Sjogrens is not easy.
When you mentioned permanent closure of your punctual plugs could you tell us, what that procedure consists of. I have had placement twice, each time a difficult insertion and by six weeks they had fallen out..? hummm
Thank you for your comments and postings.
I was diagnosed with Sjogren's a year and a half ago. I'm having a hard time keeping up with all the drops. The first few weeks went pretty well but it's getting old. I'm really hoping to get back to a point where I don't have to use them more than 4 times a day. Now since I'm using 3 different types of drops and I have to wait 15 mins between (so one doesn't dilute another) I seem to be spending my whole day timing and putting in drops.
How often do you have to use drops now that your tear ducts are plugged?
Yes, Josh mine is similar. My opthamologist just dubs them as erosion as that is effectively what I get through chronic dryness - small pits. I also have had issue with like scratches. My eyesight gets terribly affected at times. To avoid these erosions it is imperative to keep moisture in your eyes all the time in order to prevent permanent eye damage. These erosions led to why I had temporary punctal plugs and now permanent closure of them.
Have you been diagnosed with Sjogren's? If you haven't, ask for a letter from your optometrist outlining what they have been treating you for. Plus ask for the Schirmer's test. The opthamologist will probably do this anyway once he reads and hears your issues. I would strongly advise you not to use drops etc., a day or so before your opthamology appointment as you want them to see the true nature of your eye. Plus the Schirmer's test won't give an accurate reading if you've been pumping your eyes full of drops ;-)
Also, if you have Sjogren's you are much better off seeing an opthamologist rather than an optometrist.
So I just got back from the eye doctor as followup to the steroid drops. He wants me to wean off of them over the next few weeks. We're going to add in DHEA drops, and then the next step would be to get autologous drops made for me, in Manhattan. And the DHEA drops come from a pharmacy in California. And of course, stay on the Restasis drops. I'll see the eye doctor again in December for a regular visit, as I get a visual field test twice a year (I'm on plaquenil).
Wow!! Thanks for the info.
Do they have to put a needle in my eyes to put the plugs in?
The temps sound like a good idea, but I'm not real big on the idea of needles in my eyes.