Decided to quit cold turkey on the Restasis

[DG65]

Sometimes you just gotta do what feels best for you despite what the "professionals" say. Saturday night I decided to quit the Restasis. I thought about easing off it a little at a time but my wife had a point, I think - quit all at once and you should know if it's doing anything for you. So that's what I did. I guess I'll know before long if it makes a difference or not.

Edit:
I thought about this after I posted, but one of the reasons I decided to quit was that I seemed to be losing my sense of smell. I might be crazy about this, but my wife has commented on certain smells this past week while we were travelling that I couldn't detect at all. Made me wonder.

[ringo]

no worries!

i must say that with a meagre concentration of cyclosporin 0.05 % in RESTASIS (which does no good even for the dry eyes of an animal like a cat 20 times less the size of a human), well-- quitting it will be like quitting some artificial tear drop with castor oil. No major consequences there That would help one with mild dry eye, and as much as a standard artificial tear drop with castor oil would.

Come to talk about severe dry eye though...restasis effect is comparable to that of tap water. Any honest ophthalmologist will tell you that.

Now if one were taking truly therapeutic doses of cyclosporine, which start from 0.2 % and above till 2.0 %, then one might notice a deterioration upon cessation of using the medication.

I like the fancy box and the high price though-- makes you think restasis really must be some special medicine. Phew. How ruthless pharmaceuticals can be. It's just another lubricating artificial tear drop. With an extravagant price.

Oh and by the way-- all doctors know that cyclosporine is so much more effective in a gel or ointment form, not only in higher concentrations.

Anyway-- what i mean is, no worries, you can substitute restasis with any artificial drop, especially Endura-- it has castor oil as far as i remember.

Dani

[Rebecca Petris]

Ringo, I think your statements about Restasis are medically inaccurate and even somewhat inflammatory in nature. I'm not a Restasis fan - never have been - but comparing it to tap water is just plain crazy.

DG65, I think you are absolutely right to follow your own instincts and make your own decisions about care. Best of luck and I look forward to hearing how things go for you. Restasis helps some people and not others - this is well known - so there's no reason for stopping it to be controversial.

[ringo]

Rebecca, like I mentioned, Restasis does not help people with severe dry eye. They might keep taking it and it will have no benefit.

This is not medically inaccurate, as despite what's written in the leaflet for the medicine, current books on corneal diseases recommend restasis only for the stage of mild to moderate dry eye and always in combination with other treatments, as it never suffices on its own.

Also, in clinical trials it has been found to be no better than placebo for the majority of severe dry eye patients.

It is medically accurate that at this concentration cyclosporine has a minimal, if any, effect on severe dry eye/ severe inflammation.

Dani

[DG65]

Sunday and Monday were no different but today I am having drier than normal eyes. Grittiness set in off and on in the morning and are now buring somewhat more than normal tonight. This may or may not work. Will try to power through another few days in hopes of some improvement before I give up.

[Ahmet]

I don't agree

Ringo, I felt the same way before starting to use Restasis however I decided to stick to it to see what happens. For the first 5 months, I haven't noticed any difference. I could not look at a computer for more than 30 minutes and I have been using artificial tears at least 3 -4 times a day. However, slowly I started to notice I have been using artificial drops less and less, Now it has been over a year since I started using restasis, I don't use any artificial drops and I can stare at computer for 2-3 hours straight without a break. It made a huge difference for me.

So, I would recommend not making strong comments such as comparing it to tap water because it made a huge difference for some us. You might scare some people who can be helped by it.

PS: I have MGD.

[Perception]

quitting restasis cold turkey

Sunday and Monday were no different but today I am having drier than normal eyes. Grittiness set in off and on in the morning and are now buring somewhat more than normal tonight. This may or may not work. Will try to power through another few days in hopes of some improvement before I give up.

DG65 - I'm wondering how your experiment ended up. Did you quit restasis? Or did you realize it was making a big difference, and went back on it? I have been taking it for several months now - to help with post Lasik dry eye. I started on it about six weeks after surgery and have been using it since. My DE has improved, but I do not know whether it is due to normal healing or the restasis. I decided today to stop using it to find out - but am a bit nervous.

[DG65]

Perception,
At this point (2 and a half months later) I have to say the Restasis was "probably" doing "something" to help with the dryness. My eyes became dryer, I would say moderate, for a couple weeks and tapered off to mild with times of excessive dryness similar to what I was experiencing before I quit. Just in the last couple weeks I have been a bit dryer than the previous month but that could be due in part by the dry air created by forced air heat and the heater in the car (I spend 2 hrs a day in the car commuting). I am forced to wear a soft contact in my left eye to balance my vision due to over-correction and it is becoming quite bothersome. My vision has become worse and I find myself straining to focus (never able to really focus) which is giving me daily headaches and I've noticed a bit more dryness since then, also.

At this point, though, I don't see myself starting Restasis again... at least for some time unless I simply can't function. Sometimes you just know when something isn't good for you and I had that feeling with the Restasis.

[Suzie M.]

Done with Restasis - here comes life again!

I was on Restasis for 9 weeks after my October LASIK. I had every side effect imaginable but the worst two were incredible fatigue and muscle and joint pain. After 2 weeks, I would get up every morning and decide if I was taking a narcotic that day for the pain. I do have underlying AS but Restasis put me into such a bad flare, worst I ever had. I stopped taking it 5 days ago and on the advice of a naturopath, had a massage and went to an alkaline diet. This morning woke with zero pain, no fatigue and edema is going down. With the fatigue, I could not work in the kitchen, open a letter, turn the page of a book, play a musical instrument and computer use was so hard, picking at the keyboard. Merely lifting my hand took so much effort I was in tears. Based on my experience, I cannot recommend anyone take this drug. The first 3 days off I did have a fairly large amount of gritty material, mung for the lack of a bretter word , in my eyes but that decreased over the past 2 days. I am feeling better and better just using Lotemax, TheraTears and Oasis drops. I am looking forward to going outside tomorrow, with sunglasses of course because I developed photophobia after the surgery.

[Perception]

quit restasis 4 weeks ago

It has been 4 weeks since I stopped taking restasis. Honestly, I have not noticed any consistent worsening of my symptoms since then. There are days that are better and days that are worse. But it seems these ups and downs correspond with things like amount of computer use, whether goggles are worn during sleep vs. a cloth eye mask, etc.

Because I have a heft supply left over, I may start to use it once a day (instead of the twice before) to use it up, and may get some benefit from this. I doubt that I can return unused supplies to the pharmacy.