Restasis users 4xs a day?

[03CobraDryEye]

I was wondering if anyone on this site has used Restasis 4xs a day (4 vials) with increased tear production? I understand that it can take up to 2-3 months before seeing results. I have a severe dry eye condition that was a result of an inflammatory eye disease caused by viral conjunctivitis and the Herpes I virus. I'm currently getting treatment at the Wilmer Eye Institute after not having much success with my doctors in NJ over the past 5 months. This is a frightening condition to say the least. I haven't been able to work for the past 5 months or even drive a car. Once the conjunctivitis started to leave my eyes my eyes appeared to go back to normal. But 2 weeks after I appeared to be recovered, I started getting incredibly light sensitive and then the inflammation just came roaring back. At one point this summer my eyes became beet red and didn't return to somewhat normal looking until I underwent 7 weeks of Prednisone treatment.

[dave25]

I am sorry to hear you are having so much trouble, hang in there, it will get better. I use Restasis 4x per day and I think that it helps. Actually I have tried 3x and 4x per day and I find that there is not all that much difference between them. However, I did find quite a bit of difference between 3x or 4x per day and just 2x per day. So for me the increase in dosage did help quite a bit. Also, one thing that might help you save a little money is when I use Restasis, 1 vial usually lasts me an entire day. When I was using Restasis 2x a day, 1 vial would last me about 2 days, so try to squeeze as much out of the vials as you can. I hope this helps.

[ringo]

It saddened me a lot when I read your story... my severe dry eye was also related to a lot of inflammation, and I know how painful and scary it can be; I lost my job too because of this.

Initially my doctor put me on restasis 4 times a day, in addition to the steroid drops. Then, as I was tearing non stop and all the drops were coming out (tearing is a paradox side effect of having very dry eye, may be you have it too), he said to put the restasis 8 times a day. Then I mentioned to him that some people have been using cyclosporine in higher concentration in ointment as it stays longer on the eye surface. He was very keen on trying this treatment, and he showed me some medical publications where it has been very successful in recalcitrant dry eye.

So now I get it compounded from the pharmacy- for now I am on 0.2 % cyclosporine (comparison- restasis has 0.05%). It has done wonders for my eyes, but I have not stopped compeltely the other drops yet, though tapered them to once a day (steroids/NSAIDs). I also use the Restasis a couple of times a day, as for some reason it helps me "expel" any mucous strands from my eyes.I still have some of those, although much much less than the tons of them I used to have.

Also I do not need to use any artificial tears with this regimen. I stopped the tearing almost completely, it comes just a bit in very challenging environments, and only if i spend a lot of time there.

Doctor also said that there is a much more rapid healing effect with a 0.5% concentration, so he was thinking we could start on it and then taper off to 0.2%, but for now I am doing ok on 0.2%.

Anyhow, you might want to try that , it has helped me tremendously,without stopping your other medications abruptly; very slowly taper them off while you are on the cyclosporine.

It really is true that for now cyclosporine is the only available medication on the market which really heals and treats dry eye. It stimulates the tear flow as well as targets inflammation; while steroids resolve inflammation but dry out the eyes.They also come with dangerous side effects, so cannot be used long-term. Topical cycloporine can be used long-term without any toxicity or sde effects.

My point is that yes, there is a huge difference between using 0.2% and 0.05%, and there is a difference between using them 2 times a day or 4 times a day, or more. Especially if your eyes have the nasty reflex tearing. It all depends on the extent of dryness and inflammation-- most people do not need such an aggressive treament to feel better or to cope. But unfortunately I was one of those cases who needed more aggressive measures.

Hope that helps. Please let us know how you are.

Regards,
Daniela

[dave25]

Ringo, does the 0.2% concentration burn your eyes? My doctor actually had me try the 0.5% concentration and it burned so bad I could not continue using it, even though I really wanted to.

[ringo]

In the beginning I had some burning, and in the mornings my eyes were expelling a lot of nasty secretion (that was the first week to 10 days). Then things normalized gradually, and doctor was encouraging me to use the FML drop, then after 15 min the Voltaren drop, and then after 15 min put the cyclosporine ointment. In this way any sensitivity reaction by the eye is prevented. Hope that helps.

[03CobraDryEye]

Thanks for the encouraging posts. My eyes unfortunately don't tear. I'm constantly using artificial tears. I'm hoping a new biopsy and blood work will find some other problem that my specialists in NJ missed. I've never been this scared. I was incredibly healthy before this badluck illness came into my life. I can't drive a car because my visual acuity is off and I had to stop working out which I had been doing for 15 years. And its weird wearing these therapeutic contact lenses 24/7. When the drs take them of to look at my eyes the surface of my eye feels so rough. Its down right depressing staying in the house all day and not being able to go to work.

The best improvement I saw with my inflammation was when I was on the oral prednisone for 7 weeks, but my NJ doctors couldn't identify what type of eye inflammatory disease I had. They decided to divulge that gem after treating me for 5 months. Had they stated that much earlier I would have gone to the Wilmer Eye Institute much earlier. Anyway, I'm hopeful about my appointment with Dr. Esen Akpek on 12/23. I'm just hoping they can treat this with an oral steroid as well. Its a mystery why my eyes just struggle to make tears. The tears sure flow when I cry, which I've been doing a lot of lately. Right now I'm doing my best to pray daily and put my faith in the Lord Jesus Christ that He's not going to leave me in a ditch like this. I have new found compassion for people suffering from dry eye issues. I never imagined it was this complicated to live with.

[ringo]

The tearing I meant was reflex tearing from irritation and inflammation, this kind of tearing is scary and painful and embarrassing, and annoying-- you would prefer to have dry eyes as bones if you have this kind of tearing. So it is a good thing that you do not have it.

Regarding the way your eyes feel rough-- do not worry, it is one of the sensations associated with dryess. Have the doctors checked if you have any erosions/ulcers from the Herpes infection? Please have them check your eye surface for erosions.

Also look into the option of treatment with a higher cyclosporine concentration. Surely oral steroids will help dry eye, as it is an inflammatory corneal disease, but would you want to take oral steroids with all their side effects if yo can find relief with topical medications?

It is the first time I have spoken to someone treated with oral steroid for dry eye inflammation ad experienced great improvement, and although my doctor told me that it is the last resort and it works miracles, I was reluctant to try that option when I was at my worst. Thank you for sharing.

Once you resolve a bit the inflammation, you might want to try tear duct plugs.They preserve the tears from going down the tear ducts and keep them in the eye.

Please give it a little time, see what the doctors will tell you at your appointment, and stick to a good treatment regimen and it will not be immediately, but in some time with patience you will feel better, I promise you.

Just hang in there, God will help you, I found my prayers were heard, so will yours. Nowadays we are blessed with having a few, but effective medications that help dry eye, and there are more coming in the pipeline, so it is not so desperate as it might seem for someone recently diagnosed.

Please do not give in to negative emotions, and focus your energy on improving and dealing with this condition. You are not alone, all of us on this forum are going through the same pain, and you can always PM me (message me), if you need to ask about anything, or you just want to share how you feel.

please keep us posted on how your condition is progressing.

God bless you, and wish you successful recovery! Do not give up if it takes a bit of time. There is hope, and there are many people who have posted here about their recoveries.
Regards,
Daniela

[03CobraDryEye]

God Bless you Daniela! You gave me a huge lift. I've been so sad because I was big into bodybuilding and living a carefree life and now I've seen my body transform into something that I don't recognize. I know its superficial and trivial but its been hard psychologically. I have a great paying job and may soon lose it if I can't return to work, but I'm putting all my troubles in the Lord. You sound like a fighter and you sound like you're willing your way to victory over this.

My tale of woe is a bizarre one. I came down with viral conjunctivitis on 5/14/09. My pop was infected and I stupidly didn't take much precaution when I took my pop to the ophthalmologist. 8 days later I had a violent herpes simplex I outbreak which left incredibly painful pink lesions all over the inside of mouth and throat. I didn't even know I had herpes I and it was the worst pain I ever experienced. I was hospitalized within 3 days because I couldn't eat or drink. They treated it with Valtrex and while in the hospital the conjunctivitis seemed to become more aggressive. My left eye had so much discharge that an ophthalmologist at the hospital had to clean it out and when he did I had part of the mucous membrane hanging out from under my eyelid. It looked like an open clam when the clam sticks out its tentacle. After two weeks the mucous membrane retracted and my left eye started healing. My left eye returned to normal and was making tears properly but my right eye was still showing signs of inflammation and was so incredibly dry that I had to constantly put artificial tears in it.

By the end of June, I started to become incredibly light sensitive in both eyes. Couldn't drive if my life depended on it. Both eyes then became beet red and then my left started to become incredibly dry. In mid July I started treatment with some so called reputable ophthalmologists in NJ. One heralded himself as only 1 of 5 so called experts in the USA as eye inflammatory experts. In mid July I suffered a tear on the surface of each eye. I was rubbing them a lot in July and I guess the inflammation weakened the tissue. So in went the therapeutic contact lenses and the drs informed me that I also had a lot of scar tissue on the surface of each eye. Over the course of this summer I ended up getting several scratches on each cornea which of course affected my vision. I currently have a big scratch on my right eye that is almost healed but is affecting my vision because its in my line of sight. I had a therapeutic lense on my right for about 2 months and while I was experiencing some pain after a month, I didn't tell my drs about it but as time went on I noticed my vision was becoming cloudy in that eye. The drs at Wilmer told me that the therapeutic lenses shouldn't be left on longer than a month because they build up protein deposits.

Anyhow, during the course of my treatment the 7 week treatment of prednisone dramatically reduced the redness and now I'm no longer light sensitive like before. Before I had to keep the lights off in the room and cover the windows because I was so light sensitive. I've been on doxycycline since mid July, along with Zymar drops. They had me on Pred-Forte drops for 3 months. They had me on analogous serum drops for 6 weeks and I was on Albumin 5% for about a month to help my corneas heal. Wilmer Eye Institute started me on Restasis on 12/1. I'm hoping a new biopsy and blood work will identify something that is out of whack because this inflammation has been rather mysterious. I'm more hopeful after reading your post and I'm so thankful I found this website because I really needed to find a support group of people that deal with this. Its taken a toll on my family but they have been great. I know God is good and I believe in miracles. I'm prepared to dig in as long as it takes to correct this problem to a point that its manageable. Its been a long 7 months already, so hopefully the Good Lord will ease my suffering soon. I'm going to keep everyone on this site in my daily prayers. My heart goes out to you all.

[ringo]

Dearest friend,

I am so so sorry to hear about what you have been through....

I was hopsitalized with corneal erosions too, but your conditoin was greatly aggravated by the Herpes infection.... this virus causes great damage to the eye surface, namely the scars from the ulcers/erosions...they should have given you steroids in the eye together with the anti-herpetic treatment to prevent the scars, but they did not.

May be it is a good thing for you to take the oral steroids....after I read about the severity of your condition, I am inclined to think that this is something that can help you. Also, it is excellent the doctors added restasis to all the other medications u are taking.Still, I am sure that a 0.5 % topical cyclosporine in the eye will help you a lot ( cyclosporine as you know is the active ingredient of Restasis, but in there it is only 0.05% which hardly helps people with moderate dry eye).

Is there anything the doctors can do about these scars? it is good they have you on the autologous serum and the Albumin. Together with the steroids, the cyclosporine and the Doxycycline, these medications will help the surface of your eye heal, and will prevent these scratches from reappearing.

Please just stick to your treatment regimen religiously. Also, do not stop researching yourself and seek the experience of other sufferers, and also moan to the doctors if you have to, in order to get them to do their best. I think you are in the hands of good doctors ( i mean the ones that you went to after the acute episode of the infection). They have given you good medications. I am surprised that you managed to get such a comprehensive treatment regimen-- probably it is due to the severity of your condition, they treat it aggressively, and that is the right way. Although a bit late, you are getting the right treatment. If you are improving a lot on the oral steroids, may be its not a bad idea to continue them for a while and then put in the tear plugs.

Also, how do you keep your eyes moist at night? that is of utmost importance in the prevention of new scratches. Just like the Doxycycline, the steroids, cyclosporine,autologous serum and albumin. I use a cyclosporine ointment at night.

Please let us know how you are doing. I will do some research about the scars problem and post it here if I find anything. May be vitamin A in the eye would help? Ask the doctors as well....

Please take supplements-- vitamin A and E, Vitamin C, zinc, NAC.They will help your eye heal as well.

You are in my prayers. You have been through hell. But God has placed you under some excellent medical care with good doctors who are treating you with the best options available. This is very rare, as you will find out if you read about others' experiences with doctors.

Even me, I have been looking for 4 years until I found a decent doctor but even he has not treated me so comprehensively. In my case, when thedry eye started, it was misdiagnosed as severe allergic conjuctivitis, and I weas put on 3 different potent anti allergic drops, and antihistamine by mouth for 6 months, and my eyes kept getting horribly worse, coz these medications are totally contrainidicated for dry eye.

That is how I reached a state of eyes covered in corneal erosions and massive inflammation, and the next doctor I saw, thank God, was terrified of the medications I was prescribed; he told me to go off them at once, and started treatment for dry eye. It was only restasis and artificial tears which could do nothing for me at that point that I had reached. I had a massive inflammation and lots of scratches.I suffered for 4 years, without relief, just because I could not find a proper doctor.

Thank God, now I have educated myself, and have found a doctor who really cares and knows what he is doing. I am better now. So please hang in there! You will be better soon... i promise.

Please keep us posted.

Wishing you success,
DAniela

[03CobraDryEye]

I guess the scar tissue is something for me to be really concerned about. My drs in NJ wanted to do a stem cell transplant of that tissue but the dr who I consulted with at the Wilmer Eye Institute advised against that, citing the need to be on anti-rejection drugs my entire life. I had punctual plugs put in on 11/30. I guess in my mind I thought that if I developed scar tissue, that the body would regenerate those cells. It juts seems like a terrible misfortune. From what I've read, the conjunctiva is more responsible for generating tears for the eye than the lacrimal glands. I'm not sure if thats true but I guess I'll know more about treatment options on 12/23 when I see Dr. Akpek. She is regarded my many publications as one of the top 3 ocular surface disorder and drye eye doctors in the world, so I hope something can be done. I take about 40,000IUs of Vitamin A through a supplemt called Eye Guard plus, along with 10,000mg of Omega 3 daily.

[ringo]

It is great you already have the punctal plugs, and you are taking supplements. Also, you are going to see an outstanding doctor who specializes in corneal diseases and dry eye! I am sure that she will have a good idea about how to deal with the scars you have, and most probably she has extensive experience in this area. You have lots of reasons to be hopeful, you are on the right track!

Please keep in touch and update us on your condition and treatment.Wishing you a full recovery this new year!

Daniela

[Michael2]

weight lifting

cobra, I'm very sorry to hear about your story but thought maybe I can help you with the bodybuilding aspect.

I suffer from a truly great deal of pain 24/7 for the past 6 months, which my mind is always focused on and it has been quite the drag. i didn't know this disease was a possibility

i hated losing my contact lenses, but even more I hated losing all those years of bodybuilding work, and I was in too much pain to lift again...so I finally got fed up and came up with a plan that has worked very well for the past month...

I started by getting into yoga. I never had done that much yoga beforehand, but I found that 'power yoga' provided me an aerobic workout, worked my small muscle fibers extensively, and I was able to close my eyes if the eye pain got unbearable...but by about 15-20 minutes into the workout, the pain subsides as you start to focus more on your breathing. of course the pain returns after the workout, but that hour and a half is bliss. and if youve never done yoga before, its just as tough as lifting

as for weight lifting, which I really missed, I take a pain drug about 30 minutes before my lift. I found no matter how hard I tried, the 'eye pain' took away all my focus that was needed to lift weights. the pain drug has a bit of a dry eye rebound later in the day, but it knocks out the pain for an hour so I can get 100% out of my body. i found that necessary and was willing to take the cost of a rebound dry eye.

despite my deep frustration with this condition and severe depression, I've found at least some respite in exercising extensively again...in fact, I'm almost obsessed. I always loved it beforehand, but now it's the only thing that keeps my mood at all up or keeps me out of bed. i cant imagine living with this condition forever, it's unbearable, but in the meantime I refuse to let my body go.

and i guess when I'm finally 'cured,' all that weightlifting will have meant that much more to me. hope this helps, PM me if you have questions about my yoga/ lifting routine

[03CobraDryEye]

cobra, I'm very sorry to hear about your story but thought maybe I can help you with the bodybuilding aspect.

I suffer from a truly great deal of pain 24/7 for the past 6 months, which my mind is always focused on and it has been quite the drag. i didn't know this disease was a possibility

i hated losing my contact lenses, but even more I hated losing all those years of bodybuilding work, and I was in too much pain to lift again...so I finally got fed up and came up with a plan that has worked very well for the past month...

I started by getting into yoga. I never had done that much yoga beforehand, but I found that 'power yoga' provided me an aerobic workout, worked my small muscle fibers extensively, and I was able to close my eyes if the eye pain got unbearable...but by about 15-20 minutes into the workout, the pain subsides as you start to focus more on your breathing. of course the pain returns after the workout, but that hour and a half is bliss. and if youve never done yoga before, its just as tough as lifting

as for weight lifting, which I really missed, I take a pain drug about 30 minutes before my lift. I found no matter how hard I tried, the 'eye pain' took away all my focus that was needed to lift weights. the pain drug has a bit of a dry eye rebound later in the day, but it knocks out the pain for an hour so I can get 100% out of my body. i found that necessary and was willing to take the cost of a rebound dry eye.

despite my deep frustration with this condition and severe depression, I've found at least some respite in exercising extensively again...in fact, I'm almost obsessed. I always loved it beforehand, but now it's the only thing that keeps my mood at all up or keeps me out of bed. i cant imagine living with this condition forever, it's unbearable, but in the meantime I refuse to let my body go.

and i guess when I'm finally 'cured,' all that weightlifting will have meant that much more to me. hope this helps, PM me if you have questions about my yoga/ lifting routine

Thanks for the insight. My problem though is that I'm constantly using artificial tears and I can't drive because of my vision problems. I just don't want to walk around the gym putting drops in every few minutes. From late June - mid September I became incredibly light sensitive and couldn't tolerate indoor or outdoor light. So at that point, it put my weightlifting days on hold. I'm hoping the doctors at Wilmer can do something about my condition and I still believe the Lord Jesus Christ will deliver me from this. Prayer and my family gets me through the days that I wish I was dead. Its a daily struggle for me having such little tear production , but I'm going to get another biopsy done and blood work as well while I'm at Wilmer. My NJ doctors were never able to identify what eye inflammatory disease I was suffering from so I'm hoping these doctors can heal me.

[03CobraDryEye]

Today is day 16 on Restasis and I've noticed that my eyes don't burn as much as they used while sleeping. Also, a lot of the itching and burning that was experiencing with Restasis has subsided significantly. So far so good in terms of adapting to the medication.

[Keymaker]

Cobra it sounds like you are moving just like I did . I had dry eye due to PRK and started Restasis 8 months after procedure. Within 1 month I was able to stop all artificial tears. I was not cured for sure but I felt better not using them. If you respond well as I did (and not everyone does) at 12 weeks you will feel a big difference. At month 6 I was able to cut to 1 drop per day each eye with no change and at month 7 I started 1 drop every other day. My eyes seem to be over the hump and hopefully will return to normal as I had no dry eye at all before PRK. I know a chronic condition usually requires permanent use but it sounds like you may be starting well. I found a NAAC supplement as well as Vit C helped also. Good luck.