Restasis usage poll - REQUEST ALL OF YOU TO REPOND !

[cccourt1942]

See Cheryl's post above:
   I've used Restasis for nearly 4 years.  It STILL burns my eyes....night application only.  I cannot figure that out.  I don't work outside. 

   When it was Rxed, the ophthal gave me a rather strong cortisone eyedrop BEFORE I used the Restasis.  I think I used that about 10 minutes before...then the Restasis.  It was wonderful.  However--I could only use it for a month---with the caveat I could use it periodically.  Dangerous to use this stuff frequently.  Anyway....re the message to see Cheryl's post above:  After one year, my ophthal was stunned at the overall improvement of my eyes' surfaces.  I had not shed a tear in 25 years by that time...and I had used Alcon "individual" Vial drops (no longer avbl) all those years after an eye dr commented on my dry eyes.  (he actually asked then: don't your eyes hurt?)  ha, ha.  Of course they did. 
     What I tell people is what Cheryl said (well not technically) ==let your ophthal tell you if it's working.  My ophthal tells me now to use my OTC (I use Systane individual vials (no preservatives) about ten minutes after I use the restasis (at night when it burns).  If I am going thru prolonged burning I will use the prednisone drops.  He advised no more than once a month for  no more than a few days at a time.  The last 3 years before my dx of SjS I was treated with prednisone drops for what the (other) ophthal dxed as "allergic conjunctivitis".  My eyes looked like they were bleeding.   They weren't, but it was frightening looking.  I was still working and would not go to work as I couldn't believe it wasn't contagious.  She was right about that.  Just not what she said.  She NEVER suggested doing the tear test, or anything.  Because i'd used those drops freely for three years, with no warnings, I am more cautious about using them now.  Usually the OTC drops I use, the burning will subside. 

     One more thing about Restasis:  My dr prescribes it in 3 month doses .  I receive 6 boxes.  For the last two years ONE Rx for 3 months has lasted me a whole year.  I do not recall the first two years. With insurance, my cost is 250.00 for a three month supply.  You can easily see the cost is not a factor for me with my insurance.  I believe I have touched my eye ball twice (thus throwing a vial away) twice in all that time.  I have zero idea how this can last this long.   But...it does for me.

ccc

[Polly]

You have had dry eyes for 40 years?

Yes, when I was in my twenties an optometrist told me I had dry eyes and scarred corneas. He said the dry eye was "because you're getting older"! I think I was around 23-25. The "scarred corneas" I've never heard about again (and I asked!) but the dry eye was repeated by every doctor which is why I'm surprised I never got Restasis until now.

Has your Doctor confirmed that you have sjogrens?

He says I have it but when I asked about having some specific test for it, he said there was no sense in it because there was nothing he could do to treat it. I have RA/PsA and I'd been through all the treatments available to me (Enbrel to Rituxan).

I have had joint pain on and off for most of my life. In 1987 the pain became unbearable and I was so stiff I couldn't move, this happened suddenly. I went to a rheumatologist who did the blood panel and said that was negative so I didn't have RA, therefore I had fibromyalgia! I argued that I didn't, I had pain in my joints, not fibro pain, but fibro was in vogue then so that was that and my life was ruined. In 2011 my knees blew up and I had to go to a rheumatologist who diagnosed me by exam and x-rays. I've been sero-negative all along but I haven't had all the tests in a few years.

I've had strange times of fatigue throughout my life but the past few years it's gotten debilitating and lasts for months. I kept telling my rheum about it and he never said it was Sjogren's (I only knew about the dry mouth/eyes, Sjogren's fatigue is a new discovery for me), he said he couldn't explain it.

I never really noticed the dry mouth until this March when it went totally dry one day and stayed that way. I mark that as my first Sjogren's flare. I got a pred taper for it but pred keeps me awake (although like a zombie) so it seemed like it was going to help for the first two days and then I think I went back into flare mode from lack of sleep. So here I am, tired and miserable.

Nice to meet you! 

[Deb 27]

I have been using it for about 6 years now with no problems. I was worried it would burn my eyes and the first few times I used it, it did a little bit for just a few minutes. It wasn't a very strong sensation.  Now, if I forget and don't use it for a day, I notice a difference.