hello all!

[laurenjii]

Wow its so nice to find a place where people ‘get me’!!!

Ive had this problem most of my life, but it had become exceedingly bad in the last 7 or so years (Im 30 now).

I live in australia, restasis is not available but I recently found out about cyclosporin. My hospital pharmacy makes me a months supply at a time (0.05%).

What baffles me is that opthamoligists did not tell me about this! They would just prod and probe my eyes, put dyes and all kinds of foreign objects in them, do blood tests, salivary glad biopsys (to check for autoimmune conditions) yaddi yadda, Im sure I don’t need to go into detail with you guys coz Im sure you’ve been round the traps (eastern/western/alternative medicine – the lot!).

In any case Im grateful I now my eyes are less red and a bit better hydrated (altho Im still waking up between 2 and 6 times a night to put eye drops in coz they get so dry I can barely move my eyes).

Keep in touch!

[willwork4tears]

Welcome!

If you're still waking up at night putting drops in that much you have room for a lot more improvement. I used to do the exact same thing and now I'm sleeping through the night with out gels, ointments or even using my Tranquileyes. My sugesstion would be to increase the concentration of cyclosporine that you're using. Here are a couple threads on this topic.

http://www.dryeyezone.com/talk/showt...t=10913&page=2

http://www.dryeyezone.com/talk/showt...ed+cyclosporin

Ringo and I have both increased our cyclosporine and had great success with it!

Let us know if you have any questions!

[laurenjii]

ahh thanks for that excellent info!

Im going to ask my opthamologist if I can bump it up to 1% cyclosporin – and then maybe 2% after that. Im also going to ask if I can get the drops in corn oil!

so is cyclosporin a generic product, and sandimmun is the original? so does cyclosporin have preservatives? My hospital pharmacy said the clyclo mixture they make for me doesnt have preservatives (I have to keep it in the fridge)?

I feel so reassured to be speaking to people who understand my situation. altho the people in my life sort of try to understand, but not as much as you guys...

and its sooo true 'thank god for cyclosporin' it has greatly increased the quality of my life (and my confidence to actually look people in the eye without feeling embarrassed).

xx thanks again!!!

[willwork4tears]

You're very welcome!

Sandimmun happens to be a brandname formulation of cyclosporine. If your pharmacy says your drops are PF, they are probably making it with Sandimmun as this is an Australian product! http://www.betterhealth.vic.gov.au/b...e/nvcsimal.pdf

I do not have to refrigerate my drops (Sandimmun diluted in corn oil). I'm not sure what the long-term stability of cyclo is or if refrigeration will increase the stability. But I will try to find out and get back to you.

If your drops aren't in corn oil do you know what the vehicle is? Also, I wouldn't jump up straight from 0.05% to 1%, although it might be tempting. Ringo and I both titrated up slowly. I went from 0.05 to 0.2, 0.4 then 1%. If you jump up too quickly you might have stinging/burning/reflex tears/redness. Bleh! You can desensitize your eyes by moving up incrementally.

I feel so reassured to be speaking to people who understand my situation. altho the people in my life sort of try to understand, but not as much as you guys...

We all feel this way....the DEZ is a wonderful refuge away from the people that don't "get it".

[Guest]

Nice to meet you laurenjii!

And yes, it certainly is baffling when the eye docs don't know about using cyclosporine for dry eye... it drives me bonkers!

Sheralyn

[liz56]

Welcome, Laurenjii.

I hope this board helps you in practical as well as emotionally supportive ways, as it did me.

--Liz

[laurenjii]

Thanks WW4T. ah cool – Sandimmun is an Australian product?

Im seeing my specialist this week so I will ask what the vehicle is. oh yes and thanks for the sound advice about jumping from .05 to 1! I dont think Id be allowed to make those big percentage jumps anyhow. Ill ask and see if Im able to increase my dosage...

smiles
lauren

[ringo]

Good luck laurnjii,

If small amounts of cyclosporine worked for you, then surely you will have even more improvement with the higerh dose, but just titrate it over time, so you do not get a sensitivity reaction to the increased concentration.

Ask your doctor if you can use a mild steroid drop to counter the slight irritation from cyclosporine. Also, the combination will work faster and more efficient in resolvinfg the underlying inflammation; you will see improvement much faster if you add the steroid drop. Of course, you need to be monitored for IOP.

Please keep us posted,

[laurenjii]

youre a genius ringo – thanks!