Has Restasis helped you?

[Rebecca Petris]

Please participate in this poll ONLY if you have taken Restasis for at least six consecutive weeks.

[SusieD]

Rebecca, just curious: Why six weeks?

[Rebecca Petris]

Just trying to keep it apples-to-apples, i.e. not include those who can't or don't try it for the minimum period for whatever reason.

While I know many doctors recommend a longer minimum period than six weeks, 4-6 weeks is what i have heard many corneal specialists recommend. The Restasis website says that patients who take Restasis see an increase in tear production in 1 month.

[Rebecca Petris]

Please keep voting!

Only 20 votes so far... there's an awful lot more users than that out there! Keep 'em coming please!

[Adar]

Yikes!

Rebecca, I'm SO sorry -- I didn't see your notice about length of use before I clicked. I only used Restasis for 2 weeks. I couldn't tolerate the side effects; it blurred my vision so badly I couldn't study and burned every time I used it.

I clicked the last option -- none of the above -- and if I could "unclick" it, I would!

[Rebecca Petris]

Hi Adar & welcome to the forum! No problem at all, I think we can edit it. I am looking at this now and realizing that it would be an easy mistake to make because you really wouldn't see the directions till after voting anyway. I'll try to fix this. Thanks for posting

[indrep]

Rebecca,
Would it be difficult to add a Restasis w/ plugs category? The FDA submission had that category and it would be interesting to see if in the real world Restasis alone works or does it need plugs to be beneficial.

[Rebecca Petris]

It's easy to add, but it would throw the data out of whack because we wouldn't know whether anybody that already participated had plugs or not. - I think this poll was poorly conceived anyway... so many variables, it's hard to see the usefulness of any of it. I've closed it. I'll put some thought into what kind of restasis poll could be useful, and if you have any ideas I'm all ears.

[Jeff]

Hi Rebecca,

I have been using Restasis for over two years now. I am not really sure how best to answer the question. I have had the schirmer test before and after starting Restasis and the numbers did change. However as I understand it this is typical of that test, it fluctuates from day to day. I have used this in combination with BioTears for two years now. I have more tolerable days now than before but to honestly say it is the Restasis I cannot, it maybe just the passing of time. So I guess I am not sure, but I am not willing to give it up in the off chance it is what is responsible for giving me better days.

I hope this helps,
Jeff

[robinofmanhattanbeach]

No, but I might try again

I used Restasis for about 8 weeks (with plugs, though). It didn't seem to be helping and sometimes seemed to cause a stinging sensation. After I stopped using it, my eyes felt better for about two weeks. I suspect they were more moist because of the Restasis but also irritated.

[elaine]

Has restasis helped you?

No, unfortunately.
Elaine

[skygoddess]

My Dr asked me to try it (again) for three full months, and I really wanted to .. but I am off it again after 6-8 weeks use , it is just too tough to put it in during a bad spell, one of which , I am going through right now.

I wonder if you go back to square one when you stop, , if after a week or two , of non-use, you have to start the whole 6 week ordeal again.

I suspect you do, and I just don't think I can.

[dianat]

I know someone who burns a lot with the use of Restasis. He'd quit using it in the past, but began again only using at night. The nighttime use helped control the burning. I know it's not directed this way, but it might be good for you in your start-up phase.

Also, some docs will prescribe steroid drops to "jump start" the Restasis. It may help, too.

Sorry if I'm repeating what may have been said already. I haven't been on the board for a while and I haven't read this entire thread.

D

[edepapp]

Please participate in this poll ONLY if you have taken Restasis for at least six consecutive weeks.

Have used Restasis 2x/day for last 6 weeks, at bedtime and early am (burns); quit using and the dry eye is improved now over when I started. Have only been off it for 2 days, so interested to see if improvement continues

[Rojzen]

brilliant survey idea! Why I stopped Restasis, and what I plan to try next

I used Restasis for about 4 years, and it most definitely helped with symptoms. The first improvement, for me, was reduced photophobia.

While I always had a very bad raw sensation in the eyes for about 2 hours after instilling Restasis, the rest of the time, I was generally free of the searing burning sensation that had plagued me before I started on Restasis.

If relevant, I am a primarily MGD patient, with nearly normal lacrimal production.

I stopped Restasis because it never increased my TBUT, which remained consistently at 0 seconds, throughout treatment, and because I became fearful of long-term effects that have not yet been studied.

Often, a drug needs to be out on the market for nearly 20 years before long-term effects can be ruled out. Since Restasis is an immunosuppressant, even though it is not absorbed systematically, to any significant degree, it acts suppressively on the ocular surface in order to produce its benefits. This, in fact, is why the product comes with a warning not to use it in the event of active herpesvirus infection of the eye.

What is never addressed publicly is whether prolonged topical immune suppression may ultimately invite neoplastic formations, i.e., ocular surface malignancies. While there is NOTHING in the literature to suggest this could happen, I fear that after Restasis has been on the market for 20 years, we may begin to discover an increase in refractory ocular herpesvirus, among users, and even a detectable rate of otherwise rare tumors.

Forgive the bleak worries, but even though science is not yet there to document any basis for these, I think we should use common sense in our analysis of any immunosuppressant, and proceed accordingly.

I liked my years on Restasis, but I am ready for something a little less suppressive now. In about 2 weeks, I will be experimenting with NAC eyedrops, to test an opposite approach, which uses antioxidants to fight off tissue destruction. After that, I may seek systemic immunity-boosting treatment, through a physician who is willing to test me on LDN (Low-dose naltrexone), which has been written about so thoughtfully here at DEZ.

As reported previously, I've been on FreshKote since quitting Restasis, and have found that to be quite an amazing product, given that it contains no drug and is simply a very sophisticated lubricant. I'm not going to stick with it as a standalone, though, because my conjunctival staining has increased since I quit Restasis and started on FreshKote, and I'm unwilling to resume Restasis quite yet. The FreshKote may need more time to act, but I will set it aside for the NAC trial, regardless.