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Sjogrens Topics => Living With Sjogren's => Topic started by: Lotus1 on September 28, 2017, 04:50:48 AM

Title: anyone using cyclosporin (restasis)?
Post by: Lotus1 on September 28, 2017, 04:50:48 AM
Hi

I'd like to hear how you're travelling if you are using cyclosporin please.
Dr has put me on 2 months trial, made at hospital chemist.
Systane preservative is in the drops.
This is day 1, eyes are not happy.
I don't usually use drops containing preservatives.
Don't feel like carrying on with the drops.....

Lotus1
Title: Re: anyone using cyclosporin (restasis)?
Post by: Navigator on September 28, 2017, 05:32:51 AM
Hi

I am using the single use preservative free Restasis.  It works just fine.  perhaps you need to switch from the multi dose if that has a preservative in it.
Title: Re: anyone using cyclosporin (restasis)?
Post by: Lotus1 on September 28, 2017, 08:09:42 PM
Thank you for replying.

I'll phone & ask if they have preservative free.
Think I've asked Chemists before.
Don't think you can buy the p.f. vials here in Australia.

The gland under my right eye was swollen last night & hubby reckoned it was a little swollen this morning so I'm not using the drops anymore, 1 day was enough.

I don't usually use eye drops containing preservatives.
Dr reckons the preservative is necessary to activate tears.
I had to put 1 drop of restasis in each eye.
Then after 5 minutes put in my usual refresh eye drops.
Didn't work.

Ho hum, must keep searching for help.

High dose krill oil has been some help.  I've begun omega7 as well.
I find the herbal eye drops from the naturopath mostly good at night, sometimes need polyvisc eye creme.
Nothing seems to get one over the line for office work, computer etc.

Lotus1

Title: Re: anyone using cyclosporin (restasis)?
Post by: tiredndryinTN on September 29, 2017, 11:42:26 AM
Sorry you are having so much trouble. :'( My eyes do not tolerate preservatives in drops either.
I tried both Restasis and Xiidra. Neither helped in any way. Restasis was just like reg saline drops, or rather did nothing, not even sting. Xiidra made my dry eyes worse and more scratchy.
BTW, my eye dr said that with prescription drops you must wait 15mins before putting anything else in the eye to give it time to absorb, otherwise you are just flushing the Restasis right out. But like I said, it didn't work for me either anyway.
I do hope you find relief soon. Dry eye is my most severe issue. I have 2 different products in my eyes at night, and I will still occasionally get corneal erosions.  Not to make this about me, but to let you know you aren't alone. Eye problems are awful.
Title: Re: anyone using cyclosporin (restasis)?
Post by: Lotus1 on September 29, 2017, 05:39:34 PM
Yes, dry eye is awful!

I'm investigating manuka honey eye drops.
Worth a try....

Lotus1
Title: Re: anyone using cyclosporin (restasis)?
Post by: tiredndryinTN on October 03, 2017, 09:56:19 AM
Do update us if it helps. I'm sure the knowledge will benefit many here. I've tried a bazillion supplements of varying kinds with no result. I'm still hoping for a miracle though. ;)
Title: Re: anyone using cyclosporin (restasis)?
Post by: Lotus1 on October 03, 2017, 06:00:15 PM
I've preservative free Optimel Manuka Honey Antibacterial Eye Gel Sore Dry Eye Treatment, Soothing AU to trial at night on it's way.

See how it goes......

Lotus1
Title: Re: anyone using cyclosporin (restasis)?
Post by: hayley3 on October 04, 2017, 09:34:14 AM
Restasis burned my eyes like fire...so that was the end of that.
Title: Re: anyone using cyclosporin (restasis)?
Post by: cccourt1942 on October 07, 2017, 02:19:43 PM
I didn't know about multi dose.....so I looked it up...and it states it is the "same" preservative free, etc.

Also, I've been on this stuff for over 3 years.  It STILL stings my eyes at night---not in the a.m., but at night.  The ophthal gave me a strong cortisone drop when I started it:  I put the cortisone in first, waited like 15 minutes--then put the restasis drops in.  And ..during that month, it never hurt.  Now I use an otc eye drop after 10 minutes of night time dosage.  It burns because of the damage to your eyes with the disease. Using restasis has reversed the severity of my eye covering according to my ophthal.  I can only go by his wordl.

ccc
Title: Re: anyone using cyclosporin (restasis)?
Post by: dry2010 on October 09, 2017, 06:20:10 AM
I have used it for 5 years no problems.
Dry2010