Cyclosporine --Is there light at the end of the tunnel?

[Ariel]

I was diagnosed with blepharitis and moderate dry eye over six months ago. I've tried virtually every brand of eye drop available in the US and Europe, excluding "Dwell" which is the next one on my list, but I've gone as far as to use autologous serum drops which don't do a thing.

My problem basically is the feeling of "itching and burning" that just doesn't go away. I'm taking doxy 100 milligrams a day, Omega 3 and 6 supplements, Vitamine A, Azasite, Salagen, acupuncture, Chinese herbs...

The only thing missing on my list is Restasis. As I've learned that it takes months for it to show its benefits, and it can sting beyond what is manageable in some cases I've had cyclosporine prescribed in a higher concentration of 1% mixed with liposomes instead of oil by a German pharmacy.

I did a test trial with Cyclosporine eye drops at 0.05% and there was no stinging so I'm now waiting for the cyclosporine at 1% to come in the mail. I am wondering if it will work because I know its success rate is not as high as it is believed.

I don't know why the autologous serum hasn't work for me but I read in a related post it only work when taken in conjunction with Cyclosporine. Is this a fact?

I'd like to hear from anyone who's seen a marked improvement after using Restasis or Cyclosporine eyedrops of any concentration. I just read that when using cyclosporine eyedrops while already taking other anti-inflammatory eyedrops the benefits of it are not seen. So I guess, it would be important for me to know what eye drops fall within the anti-inflamatory category so that I can stay away from them.

[Ariel]

A fellow DE sufferer suggested I take "Tramadol" to alleviate the non-stop itching and burning pain but I wonder if it is a good idea to use it on a daily basis during long periods.

If anyone has any advice for me I’d love to hear it. Thanks for taking the time to read my post!

[dave25]

I use Restasis and an anti-inflammatory eye drop called Acuvail and both of these drops have helped me a great deal. I tried using cyclosporin and .5% concentration but it burned so bad I had to stop using it. I think for some people it might be important to slowly get used to higher concentrations of cyclosporin instead of making the big jump. Right now using Restasis 4x per day along with the anti-inflammatory drops are working very well for me though. I hope this helps.

[Ariel]

Hi Dave! Thanks for your reply. It says here:

http://www.agingeye.net/mainnews/newscan2.php

"Increased tear production was not seen in patients currently taking topical anti-inflammatory drugs" so I'm a bit confused.

Perhaps other Restasis users can share their experience regarding their use with/without anti-inflammatories. My tolerance of Restasis as it is formulated by Allergan as well as compounded Cyclosporine was greatly affected by the itching and burning. I don't know if it was caused by the oil excipient or the alcohol but Cyclosporine in liposomes produces no itching so everyone who's given up on Cyclosporine should take note of it.

[dave25]

I use the anti-inflammatory drops to help reduce the inflammation in my eyes and eye lids. I'm pretty sure cyclosporin is the only drop that will actually increase tear production but I could be wrong. Mainly I use the anti-inflammatory drops because they help reduce the pain and make my eyes feel more "normal".

[dave25]

Dave, have you tried using Xibrom? Also is the acuvail you are using safe to use long term? I did not receive a whole lot of benefit from xibrom and I am wondering if the acuvail is worth trying. I see acuvail has no preservatives and so do they come in single use vials? Thanks

Yes they do come in single vials. I have never used Xibrom, but I did use Nevanac which is another anti-inflammatory drop with preservatives. The Nevanac did help however Acuvail works much better for me because my eyes were getting really sensitive to the preservative BAK.

[Ariel]

Hi guys,

I was very anxious about giving Cyclosporine at 1% with Liposomes a shot when I wrote my initial posting because I had tried Cyclosporine at 0.05% before without seeing any benefits. Cyclo at 1% with Liposomes was my last hope for DE relief.

I'm in Spain where eye-doctors for the most part know nothing about DE treatment but lucky for me there are some advantages to living here, one of them being that it is a lot easier to test new medications including some of the ones you would have a hard time getting in the US or the UK.

So I am now taking:

Doxy 50 mill twice a day
Omega 3
Fish oil
Autologous Serum at 20%
Cyclosporine at 1% with liposomes twice a day.

I tried Cyclo at 1% with another carrier before and the stinging and burning was unbearable. The benefits of Cyclosporine at 1% with Liposomes were immediate, which was a great surprise I didn't expect because while using it at 0.02% for a short week it didn't help at all.

I'm now also using Systane Ultra as a complement to the Cyclosporine only because I read that Cyclo works better with Systane than it does alone. That true?

I wonder if I'll be able to make Doxy 50 mil and Cyclo at 1% once or twice a day my only treatment on a long term basis without using anti-inflamatory or anti-allergy medicine.

I'd appreciate any feedback you can give me on this.

[spmcc]

Re: cyclosporine .05% vs 1%

Hello,

I am surprised you jumped from .05% to 1% so quickly. 1% is 20 times the strength of .05%. I've heard of people "inching" up... e.g., .05%, then .1%, then .2%, then .4%, etc. But a jump from .05 to 1 is quite large!

Anyone else done this?

Good luck.

[Ariel]

I've only been able to go from 0.05% to 1% because I'm using Cyclosporine with liposomes as the carrier. I tried it with a different one before and my eyes couldn't take it.

Doxy and Cyclosporine at 1% haven't solved all my problems so I'm trying to research what else I should supplement their use with. I'm going to be getting autologous serum at 100% in the coming days. I am using it at 20% now and it isn't doing anything but if I may be having an ocular allergy of some kind and I don't think serum and cyclosporine will have an effect on it in any concentration.

Acuvail and Xibrom have no preservatives? Can you use them long term?

[dave25]

I've only been able to go from 0.05% to 1% because I'm using Cyclosporine with liposomes as the carrier. I tried it with a different one before and my eyes couldn't take it.

Doxy and Cyclosporine at 1% haven't solved all my problems so I'm trying to research what else I should supplement their use with. I'm going to be getting autologous serum at 100% in the coming days. I am using it at 20% now and it isn't doing anything but if I may be having an ocular allergy of some kind and I don't think serum and cyclosporine will have an effect on it in any concentration.

Acuvail and Xibrom have no preservatives? Can you use them long term?

I believe Xibrom does have preservatives. Acuvail does not. My doctor told me that I could use Acuvail long term. I am going to see him again in a few months and ask if there are any risks of long term use though.

[Ariel]

Thank you Dave,

I would have to bring "Acuvail" from the States but I can get "Acular" here in Spain. Aren't these two pretty much same thing?

http://www.rxlist.com/acuvail-drug.htm
http://www.netdoctor.co.uk/medicines/100000026.html

Check out the side effects... I don't think this is something anyone should be taking every day!

Very common (affect more than 1 in 10 people)
Eye irritation.
Burning sensation in the eye.

Common (affect between 1 in 10 and 1 in 100 people)
Inflammation of small areas on the surface of the eye (keratitis punctata).
Eye pain or stinging.
Itching of the eye.
Swelling of the eyelid(s) due to excess fluid retention (oedema).
Red eye due to excess blood supply (hyperaemia).

Rare (affect between 1 in 1000 and 1 in 10,000 people)
Corneal thinning or ulcers.
Blurred vision.
Dry eye.
Headache.
Increased tear flow.

The side effects listed above may not include all of the side effects reported by the medicine's manufacturer.

This to me is pretty frightening.
Is every anti-inflammatory medicine going to be as risky?
All feedback will be greatly appreciated.