Hi everyone, I went to have my eyes checked today and as usual I was given the Schirmer's test, which confirmed to me, even before the test was complete that things had changed as my eyes did not produce tears . I was told that both eyes had deteriorated from my previous apt and were at level 6, (10 being the acceptable level so I am told). They have prescribed me some eye drops from a vial, which needs to be put in every half an hour liberally, which is impractical at work as they also need to be refrigerated once opened! I was also given drops to put in just before I go to sleep at night.
My questions:
If my tear production level (sorry for the basic language) is 6 now, could this level rise with these drops and over time ever go back up BY ITSELF or will I always have to have these artificial tears/meds for life?
What could the consequences be for this problem? Does this mean that SJ is on the march and could this not only be affecting my eyes, but also internal organs at the same time? Sorry to sound dramatic, but I feel a little anxious knowing that things have changed.
I do hope that you can help me answer the above questions as I know there are some of you with dry eyes with artificial tear meds.
Here are the names of the meds they have given me, but I live in the UK so they may be different to those you take in the USA.
Carmize (Carmellose sodium) 0.5% - lubricant ophthalmic solution - to be used throughout the daytime.
Lumecare Carbomer Eye Gel. 0.2% w/v 10g - Long lasting tear gel - to be used at night before going to sleep.
Thank you in advance for any help you can offer.
Joy,
There is a prescription drop called Restasis that improves tear production for many of us. I recommend you ask about it at your next eye appointment. In the meantime, I hope the drops you are using will bring relief.
Best wishes,
Cheryl
Joy, I believe what the MD gave to you is our version of Celluvisc for daytime and more of a thick gel for nighttime. He may want to try plugs as well to help keep the tears from draining. I would be happy to have a six on a Shirmers test....it's not that far from 10 and who knows, if tested on a different day you may have scored a 10. A lot of people on this forum have a 0 Shirmer's test. Don't give up ship......follow your Ophthalmologist's instructions and you'll keep your eyes healthy! ;)
Thank you for your replies.
gold55: Would you know of a website that can explain what plugs are? I will try google and see if I can find anything, would this entail an op? Day surgery?
You mentioned that if I was tested on a different day I could have scored a 10, does this mean that the dryness can vary? My GP told me that once I had a 6, things would not improve as the tear glands had been damaged, or words to that affect! So could I really score a 10 another time?
Cheryl: I have seen lots of people writing about Restasis, never knew what it was, I do now... Lol. Thank you for replying.
Joy, You seem to have a very good rheumy there, follow his advice. I have suffered dry eyes for years now, and have to faithfully use eye drops every day, I use Celluvisc throughout the day, and Lacrilube for bedtime. my Optician knows about it and I visit her every year. Plugs were mentioned at last visit, but I said I'd think about it. My worst enemy, as I believe I told you is central heating, air- conditioning in shopping malls, etc' open windows, and any where that air is streaming in, hence my avoidance of public transport, and shopping trips, which by the way , I love! eyes do not ! However my sight has not deteriated much more than that of someone my age , Mind you ,I do have really frustrating days with it, days when I could scream, but we have to soldier on and keep up with the treatments.
Re the Restasis, I believe is not available here in the UK.
Get a small plastic ice pack and case , and take your phial of drops in a small plastic box to work in that. They will keep cool enough in that. I do this where ever I am going to be out for any great length of time. Best wishes, Dolly
Hi joy :)
I've found that my tear production has fluctuated. My first Shirmer test was 6 in one eye and 4 in the other. I was put on Plaquenil for about a yeaar before being referred to an opthamologist.
My eyes scored better at the first opthamologist appointment. They scored 8 and 6. 6 years on they have gone back down to 5 and 3. The opthamologist told me to take fishoil every day. That and the Plaquenil seemed to help.
I use drops but not as often as I did when I started them.
Take care - Scottie
Hi Scottietottie, I am so grateful for your post. I have been trying to google to see if tear production levels changed and then I saw your post, so thank you for getting in touch.
I watched a video online this evening where a Dr said that having a fan on dries your eyes out, which I knew as the wind can cause me to look like I have been crying. I do have a fan in our bedroom on at night, but that is because my themostat is up the wall and I get so hot that it disturbs my sleep, so I am wondering what to do. A humidifier would be nice, but that wouldn't help with the getting hot! Do you have this problem?
I see my Rheumy this month and I am sure she will give me another test so I can see if things change.
Thanks again :)
Hi Joy,
My Schirmers scores have fluctuated a lot. I started out with 3 and 2, then went to 7 and 6, and last time I was at 12 and 8. I don't know for sure if it's the Restasis, but since that's what it is supposed to do, I am a believer.
You may want to try wearing a sleep mask at night. Then if you want to keep the fan on your eyes will be protected. Any air movement coming from above (fan, heating or air conditioning ducts) really kills me. When I see a ceiling fan I run like heck! A sleep mask has enabled me to keep a ceiling fan on when I need it for climate control at night.
CandyBar
Thanks CandyBar: Would one of the masks that people wear on the airplane do? I am sure I could dig one of those out, but would a chemist sell a proper 'sleeping mask'?
OK, just found that Boots the Chemist sell them, so will get one tomorrow. Problem sorted.
Thanks everyone for your input.
Oh good! I think it will really help you!
There are many different kinds of masks and some are made specifically for dry eye sufferers with little moisture pads, etc. I have tried them all! My favorite one right now is the Bucky 40 Winks sleep mask. A mask can also be part of good sleep hygiene in that it ensures a dark environment. I sleep better with it on, fan or no fan.
Every little thing helps. Good luck with it.
CandyBar: Just looked up one of these mask on the internet, they are quite expensive but if they are more comfortable to wear and do the job better I may just go for this.
Thanks
I was zero in both from the start, on restasis and I have my lowers plugged, I get my recheck next week. I am not expecting more than zero, my glands seem pretty dead all I get is fake moisture from the meds. I dont think once they hit zero they ever come back.
I have been consistently zero for a number of years now. I might add that I had Lasik surgery 13 years ago and that began my dry eye stint. Sjogrens came along in 2006, but probably had it years before. One of my eyes is terribly sore 24/7 with the zero score and the other not too bad. I have to keep them lubed. The numbers sometimes don't mean a whole lot, but are a sort of measuring tool. Why would one eye hurt all the time at zero Schirmers and the other not? There is no answer. Lucy
There are a wide variety of sleep masks. I use a satiny finish inside a big black one that is rougher. I also use a fan at night, and with the sleep mask there is no eye drying. Check on Amazon; I found some really heavy duty ones for $15 US.
Sharon
I went back to the eye doctor Friday, and he put in the plugs in my eyes. He put some numbing drops in both eyes, and then put in the plugs.
It was a simple procedure. These are temporary to see if they help with the moisture.
If they feel like they help then in 2 weeks I will have permanent plugs inserted. He gave me a sample pack of over the counter Systane Balance drops to use, and we also bought some.
They are in the purple box, and are the first ones to have oil in them, and are suppose to be restorative.
susanep :)
susanep :)
My temporary plugs were put in 2 1/2 years ago. They are still there. If yours will stay put, wait until they fall out to get permanent ones in.
What can I say? I'm cheap!
Sharon II
Plugs. If lowers insufficient, plug uppers too.
Styx
Hi Joy,
My eyes have been all over the place in terms of tear production. And now, 12 years after being diagnosed with Sjogren's, they're pretty dry. I tried Restasis, but couldn't use it. It was just too painful. I started seeing a new doctor that specializes in dry eyes, the first one in my area, about 4 weeks ago. I got my permanent plugs put in last week, after having the temporary ones last about a week. They're called punctal plugs, in case you want to look them up. I still use drops during the day, I use over-the-counter Theratears during the day and the Refresh Celluvisc at bedtime. I bought a hydrating mask from my eye doctor that I try to use for 4 minutes before bedtime but don't always remember. It was about $30.
Good luck with your eyes,
Tracy
My temporary plugs have helped. For the first time in years I wake up, and can wait a bit before having to run and put in drops.
Before my eyes were stuck together after waking up until drops put in.
My temporary plugs I think are silicone, and will dissolve after about a week, so when I go back next week, they will then put in the permanent ones.
I also will continue to use drops along with having in the plugs.
susanep :)
Thanks everyone for your help and advice. I see my Rheumy next week and so I will be updating her about my dry eyes test, I am sure she will do another one when she sees me.
My son just got his ducts plugged the end of November, we go back on Friday for the recheck. Eye Dr. recommended and tried to plug them in October but they had to order smaller plugs since his ducts are so tight/small!!
In addition to the plugs, he has been on Restasis 2x a day, uses natural tears several times a day at school, and GenTeal night time gel to sleep. He also uses the gel when he is going to spend time outdoors or play sports as his eyes are insta dry.
He said his eyes are finally starting to feel a little better, so it takes time for everything to work together.