Cyclosporine prescribed, not keen!

[Lotus1]

The opthalmologist has prescribed me compounded (at hospital) cyclosporine eye drops to trial (contain systane chemical for activation).

Dr said the drops aren't nice to use, sting etc.
If going to work take about 2 months.
Most people don't get past trialing the drops.

I never use eye drops containing preservatives so I'm feeling anxious about trying these eye drops.

I think cyclosporine is known as restasis also & I see some people working in offices are fine with the drops.
I've notice others don't get on with the drops

Any recent feed back would be appreciated.

Guess I won't know until I try!!

Opthalmologist says if these drops don't work he's recommending punctual plugs which I'm also not keen about.
I think I've read some of you are fine with punctual plugs, others not.

I've had some improved on high dose krill oil.
If only it would get me over the line I could give the docs a miss.....

Have a nice day everyone.

Lotus 1

[irish]

In have been on the cyclosporine eye, which are the same as Restasis since 2004. My eye doc started me on them about 8 months after my eye dryness started. The dryness was the last symptom I developed prior to diagnosis with Sjogrens. I had sjogrens 40 years before diagnosis as far as my immunologist and I can figure out.

I have no complaints with these drops. Yes, they sting at times but actually the longer you use them the less they sting. This is because the inflammation is improving from the drops. The best way to start is to have about 2 weeks of steroid eye drops prior to starting the Restasis. Then steroid eye drops reduce the inflammation so that when starting the Restasis the stinging  instillen't as bad.

Also, one can instill saline OTC eye drops about 15 minute s before putting the restasis in the eye and then instilled again about 15 minutes after the restasis. Many people put their restasis in the frig so that they are cool and this helps with the stinging. I had stinging at first and do off and on but I think the benefits far out weigh the stinging.

You can also use the small vial for 2 days or 4 dosing schedules. This is approved by many optometrists now. Just make sure to not touch the tip to anything in order to prevent the spread of bacteria. I keep my vial in a small plastic container with a cover and place a piece of folded Kleenex on the side of the container to keep the vial upright.

This is something that could make your life so much better and is worth the try. I think that many times we talk ourselves out of meds that we need out of fear. I know that there are more people on the Restasis than we knows as my optometrist (my daughter in law) has only had 2 people who couldn't use it. If you find you have problems there is a new drug called Ziidra and has been out less than a year and some people like it.

I am sitting here talking to my daughter in law right now and she says she has tons of patients on Restasis with good luck. Also, she said to tell you the small vials are preservative free and there is a new restasis product out that is multidose and she doesn't know if that is preservative free.

DIL also says that it can take up to 3 months to work as everyone is different. I hope this info helps you and that you at least can give it a try. Good luck. Irish

[Lotus1]

Thank you, Irish.
I'll give it a go.
I wanted preservative free, but hospital chemist reckoned they couldn't do it.
Aussieland may be behind US???
I'll enquire about preservative free vials.

Lotus1

[Sharon]

Hi Lotus,
The Restasis didn't burn my eyes much at all. Tolerable. It just doesn't seem to help me much.
Plugs- I got temps in my lower ducts that did nothing for me and then etmps in my upper ducts that caused severe
irritation and endless tearing. I believe my body rejected them. I had to have the upper taken out after a few torturous days.
Hope you find relief with one of these options.
They're all worth trying.

[Lotus1]

Yes, Sharon one doesn't know unless you try!

Lois

[SunshineDaydream]

Keeping Restasis in the refrigerator has reduced stinging. Maybe that would help with your drops, too. Ultimately, they didn't work well enough for me but punctal plugs (top and bottom) have been life changing.

I hope the drops work for you. If not, I hope plugs do. Keep us posted on how things turn out. 

[Lotus1]

Yes SSDD the drops need to be kept in fridge, may help.

Preservative free vials don't seem available, not happy.
In the past I got in a mess with drops containing preservatives, build up.

Will keep you posted.

Lotus1