alright so I thought I was in like flint with restasis because no pain when I put them in....but unfortuately the cumulative effect of using it 2x a day daily this week has been migraines and eye pain and photophobia.....I wasnt having eye pain and photophobia this year, not to this extent anyway, not close. the last time I had eye pain and photophobia like this was when I had a bad reaction to a dif med 6 years ago. I suspect I have some sort of porphyria, some thing causing chemical sensitivity, and I think restasis must be somewhat tricky to break down in my detox system, something doesnt work well with the cytochrome p450system in me.
I am curious tho, has anyone ever suspected restasis might have a systemic, positive effect on their autoimmune issues in general? I am wondering if it might be worth it to pulse restasis, take it less frequently, at a level where it would be less likely to trigger the eye pain and intense photophobia. This is probably not mainstream medical thinking but if any of you are practiced in having to think outside of the box when it comes to yr healthcare and have some knowledge please share. Not everyone fits into their "evidence based" practices and some people are super sensitive to the regular meds they prescribe, medicine needs to get broader to figure out solutions for the outliers.
dang! no sensitive mavericks on here? :)
I like to think and live outside the box however, I haven't tried restasis yet. I've been working in Ophthalmology for 20 some odd years and I'd be happy to ask our cornea surgeon what she thinks about half the dosage. She's pretty "pro restasis" so please don't expect much. There is another doc I work with who feels restasis isn't as successful in SJS patients as with Lupus patients. I will also ask him.
I'm now trying Zyflamend....an herbal mix for inflammation, etc. I will let you know how this works. Lots of positive things written about it and Dr. Weil (integrative medicine at U of AZ) highly recommends it.
There was a study that came out maybe 6 months ago (?) showing that after people used Restasis twice a day for a year, most could then drop down to once a day with no less protection. My ophthalmologist said she had read the same study, but reminded me that I still shouldn't keep a vial open for longer than 2 days. (I've found a vial has enough fluid for 4 doses).
So, there appears to be some residual effect that builds up.
Here is the reference for that Restasis study. I hoped to find an abstract or summary, but couldn't:
Su MY, Perry HD, Barsam A, et al. Cornea 2011 Oct; 30(10) :1098-104.
I have been on Restasis since 2004. I have often wondered if it really is working. But I am to afraid to stop then find out it was really working. My eyes are so dry with using it 2x day. I am now using night time ointment. photophobia has not been a problem until just in the last few months. I didn't know there was a name for it. Thanks~ Now I feel like I can see but with a film if that makes any sense. I have been to the eye specialist he says everything is fine....just very dry.
last summer my rheumatologist put me on zyflamend~ it has worked wonders on my joint pain. I don't know that I have notice a difference any where else.
are any of you taking fish oil or flax seed? I do fish oil but again not sure if it helps either~
hey thanks gold, sooki and star, really appreciate the info and feedback
will look into that zyflammend, I do take individually tumeric and ginger sometimes in smoothies or tea
I have stopped the restasis as it was sensitizing my system and causing headaches, and the photophobia etc just wasnt worth it. perhaps in a couple weeks i will see what happens if i take it once or twice a week or something and see if can ease body into it, but doubtful, when i get eye symptoms and headaches from a med its usually a very bad sign of me ever developing tolerance.....darn
Did your eye doctor put you on prednisone eye drops for a week or 2 prior to starting the restasis?? This is the standard preferred way to prepare for the use of the restasis. This helps to calm down the irritation in the eyes. When you start using the restasis your eyes will then be less sensitive.
The pain and sun sensitivity are usually because of the severe dryness and irritation of the eye tissue. The prednisone drops decrease this irritation. Also, it should be noted that many eye docs will advise people to refrigerate their restasis. The cool drops help to soothe the eyes and make it more tolerable for peoplee.
I have been on restasis for about 7 years now. I think I was started on them about 6 months after they came on the market. AT first I had the pain and sensitivity but not as bad as some people. REason being, the last symptom of the Sjogrens that I got was the dry eyes and that was a few months after I was diagnosed with sjogrens.
It ws mentioned that you can get more than one dosing out of one ampule of the restasis. This is true and has been approved by the MInnesota Optemetric Association as well as other doctors groups. The main thing is to use good technique. Wash your hands and after use place the ampule in one of the blue stand up holders. I placed my holder inside a plastic container with a cover. Inside the plastic container I took Kleenex and made a little bed so that the blue holder would not tip over. Docs say that you can use these drops for 2 days if you can get that many drops out of the container.
You can refrigerate the container with the drops and this also keeps the bacteria count down. I don't refrigerate them as I know sterile technique. I have not had an eye infection in all these years so must be doing something right. Good luck and hope your can take these drops. They really helped my eyes. Irish
Hi wendyoh,
If you've just recently started using Restasis, a bit of sensitivity can be pretty normal. I'm not a medical professional but as Irish states, many times we need another Rx drop such as predisone at the same time at the beginning. And the eye pain/sun sensitivity can be more likely from dryness and irritation to your eye rather than Restasis use.
I've been using Restasis for a little over 2 years, and it's helped my dryness and eye pain quite a bit. I am to the point I use one vial daily instead of two. However, there's been many times I've needed an additional prescription drop at the same time. My opthamologist has prescribed Lastacaft or Bepreve. I've had times where I've needed one of those for weeks at a time to help clear further inflammation.
I might suggest you talk with your prescribing doc about the issues you're having. Hopefully, they can give you some info. and options for relief.
Take care,
Melinda
thanks you guys....yes Irish had told me that in past about the prednisone first and the eye doc made me pick one or other, refused to give me both
but I will call them now and perhaps with the restasis failure they will be willing to do prednisone drops and then I could try restasis again after that
say Meld I havent heard of Lastacaft or Bepreve before, is that like alaway by bausch and lomb? that has ketotifen in it and is an antihistamine too, I have some as you can get it over counter, but I havent used it much
I have used a single dose of Restasis at night for over a year. I had dryness, but not actual eye pain, and the opthamologst said they looked "good." So once a day. Saves some money. I use an OTC eye lube when I wake up.