Another Restasis failure

[Natalie06]

I restarted it again this past Wednesday, used it twice that day and just once yesterday morning. When I woke up yesterday, my eyelids were swollen and red and actually looked bruised by the afternoon. My eyes were inflamed all day yesterday with increased pain, itching and photophobia along with increased "stuff" in my eyelashes. I ended up leaving work, coming home and using the Alrex and ice packs.

My dry eye MD is off until Monday and I have made the call the stop the restasis as I have 2 graduations and a graduation party this weekend and will be outdoors much of the time, weather permitting.

This is my fifth time trying restasis with these absolutely terrible side effects within days of starting it. Call me crazy but I just can't understand why I keep being told to use a drug that makes my eyes worse. And it takes days for me to get my eyes back to being tolerable.

Sorry for whining. I am just worn out. The disease is bad enough but the treatment is feeling even worse. I think today I am as low as I was in the days immediatley following Lasik.

Natalie

[Guest]

Natalie

If it is any consolation, Restasis is not one of my friends either.

I had a terrible time with it, I just hate the stuff and it costs an absolute fortune.

Like you, an ice pack is the only comfort I seem to get these days but I have noticed now that it makes my eyes red as well, in the past it used to clear them.

I am off to the DR today to find out about this plug that I pulled out to see whether I should get it put back in. My I feel like my eyes are not working together today at all.

Take care of yourself, if you need a "chat" email me.

Ian

[Natalie06]

Thanks Ian.

Very, very much. I so admire what you've been able to do in publicising the risks of Lasik. I will almost certainly email you for your advice in getting something done here in Maine/US. And I did send a copy of the article to the American Academy of Ophthalmology so they'd know that their counterparts in other countries are taking action.

I keep fighting.

Natalie

[Rebecca Petris]

I restarted it again this past Wednesday, used it twice that day and just once yesterday morning. When I woke up yesterday, my eyelids were swollen and red and actually looked bruised by the afternoon. My eyes were inflamed all day yesterday with increased pain, itching and photophobia along with increased "stuff" in my eyelashes....

This is my fifth time trying restasis with these absolutely terrible side effects within days of starting it. Call me crazy but I just can't understand why I keep being told to use a drug that makes my eyes worse.

!@#$!@#$.

I'm sorry, but I'm going to call your DOCTOR crazy if s/he is still encouraging you to use a drug that prompts that kind of reaction on only three friggin' applications! This makes ZERO sense to me.

Edit: Try and get some pictures of your eyes for your doc. Continuing to prescribe you something that you are clearly allergic to is indefensible.

[kitty]

I too am a Restasis drop out. I see two eye docs in the same practice. One for the regular eye stuff and one for the DES. My regular doc diagnosed the DES and Rx'd the Restasis the first time. I had similar side effects as you, and was told I was allergic to it. So, I go to his partner for plugs and he insists on putting me back on Restasis. I have the same side effects. He says I am not allergic. I got some Patanol for seasonal allergies and guess what? The Patanol resolved the Restasis side effects. That confirms for me that I am allergic to Restasis. My DES doc still won't admit that I am. I think Restasis is like any other drug. It can be prescribed like candy. While the doctor may be crazy for continuing to prescribe it, I have to say this is a team effort. It is up to the patient to flat out refuse to use the stuff if they are experiencing bad side effects.

[calli66]

I have had mixed results with Restasis. I wonder if the Castor Oil component causes the allergic reaction.

I have 2 more boxes of the stuff. I had been using it once per day now for 6 months, and am going to start again with 2 times per day. I seem to get to that "intolerable inflammation stage" too, but it takes me longer than you guys.

My new insurance doesn't cover Restasis, so I'm likely to be a drop-out too, unless by some miracle, I see great improvement here in the next couple of months.

I think it's just the "money-maker" drug company reps who push this stuff in the eye clinics. It has not increased my tear production, as "advertised."

Speaking of advertisements, I just bought some PF Refresh Celluvisc and the product sheet that came with it---one whole side was all about Restasis! I even read it---and there are parts that are confusing. Now I've thrown the paper away--can't quote it exactly.

But it says that Restasis use has been shown scientifically to increase tear quantity. Then in the next sentence (the one that confuses me) it says something like, "but [no increase] in tears when steroids or plugs are used." What do they mean? Do they mean that if Restasis is used along with steroid drops or plugs, that it doesn't increase your tears? Or do they just mean to compare Restasis (more tears) with steroid drops (not more tears) and plugs (not more tears)?

I think there was a discussion of this on Dry Eye Talk before, but I didn't understand it then, either. 'Cause I'm wondering if it makes sense for me to use Restasis, now that I have lower plugs.

Can somebody help me understand this? Thanks!

C66

[kitty]

I have had mixed results with Restasis. I wonder if the Castor Oil component causes the allergic reaction.

I have 2 more boxes of the stuff. I had been using it once per day now for 6 months, and am going to start again with 2 times per day. I seem to get to that "intolerable inflammation stage" too, but it takes me longer than you guys.

My new insurance doesn't cover Restasis, so I'm likely to be a drop-out too, unless by some miracle, I see great improvement here in the next couple of months.

I think it's just the "money-maker" drug company reps who push this stuff in the eye clinics. It has not increased my tear production, as "advertised."

Speaking of advertisements, I just bought some PF Refresh Celluvisc and the product sheet that came with it---one whole side was all about Restasis! I even read it---and there are parts that are confusing. Now I've thrown the paper away--can't quote it exactly.

But it says that Restasis use has been shown scientifically to increase tear quantity. Then in the next sentence (the one that confuses me) it says something like, "but [no increase] in tears when steroids or plugs are used." What do they mean? Do they mean that if Restasis is used along with steroid drops or plugs, that it doesn't increase your tears? Or do they just mean to compare Restasis (more tears) with steroid drops (not more tears) and plugs (not more tears)?

I think there was a discussion of this on Dry Eye Talk before, but I didn't understand it then, either. 'Cause I'm wondering if it makes sense for me to use Restasis, now that I have lower plugs.

Can somebody help me understand this? Thanks!

C66

I believe it says this because Restasis was not studied in people who use steroid drops or who have plugs. It's another way of saying "we don't know" for those populations.

[Elegiamore]

Pals,

From the Restatis website:

"RESTASIS® Ophthalmic Emulsion helps increase your eyes’ natural ability to produce tears, which may be reduced by inflammation due to Chronic Dry Eye. RESTASIS® did not increase tear production in patients using topical steroids or tear duct plugs."

This inspired me to look up the FDA's studies utilized for Restasis approval in 2002. The study was based on 1200 patients with "OCULAR INFLAMMATION associated with keratoconjunctivitis sicca". Restasis caused "statistically significant" increases in Schirmer wetting of patients in only 15% of patients after SIX MONTHS of treatment. Data showed that 17% patients treated with Restasis had eye irritation using the drops.

Control test subjects (normal folks, I assume) had only 5% tear increasing!
NO increase in tear production was observed in subjects being treated with anti-inflammatory drugs or using punctal plugs. So Kitty, people with plugs were studied and flunked the test.

I, too, was automatically issued a prescription by my eye doctor, and quoted $120 a month cost (also not covered by insurance).

Natalie's doctor should be horse whipped and thrown out of the profession. Along with all the others who arbitrarily prescribe this ripoff drug.

What do y'all think about this?

A very mad,
Elegiamore

[indrep]

Eligiamore

If you read the entire FDA submission you will see that 15% of patient cam AFTER the Itend to Treat group was reduced from 1200 to about 400. The improvement was seen mostly in Sjogrens, Rhuematoid Arthritis and a few in post menapausal women.

I can now tell you that the Restasis reps are telling docs to put plugs in four weeks after starting Restasis. I could go into long explanations on why this drug is not for the GREAT majority of patients, but it can get confusing and the experiences of the fine folks on this board prove the point.