Ciclosporine with liposomes

[Susie28]

Hi there!
I had big problems with the "normal" restasis like very many other people in this forum.
Now my eye doctor suggested to try ciclosporine solved in liposomes (not in oil)
He considers that it is the mix of ciclosporine and castor oil which has caused that pain and irritation my eyes got from the restasis.

Do you have any experience with this sort of ciclosporin solution? I'm a bit scared to try ciclosporin again because at the last time I used restasis my eyes got very bad and this condition remainded for about 3-4 weeks :-/

But I'll try it anyway and I'll post the results:-)
I'll get the drops in about 1-2 weeks (because theres only one drug store in Germany which can manufacture these drops...)

[cristiandryeyes]

Hi Sus, I'm sorry I cannot answer your question. What is the cyclosporine for? Does it benefit patients with Bleph/MGD ?

[ringo]

Dear Chris,

According to published medical research/literature in the last few years, Cyclosporine is an immunosuppressant (suppresses inflammation) and also suppresses specific components in the inflammation process that disrupt the nerve signalling to the tear glands, thus stimlating the glands to produce more tears. I have posted about this in detail in another recent thread. It is also the only FDA approved substance for treating dry eye, not just alleviating the symptoms.

Cyclosporin in liposomes is, according to medical sources (and my doctor), by far the best vehicle used to deliver the substance to the eyes; it even penetrates the eye tissues deeper than other preparations of cyclosporine (although that is not necessary in ocular surface disease). I have no idea how it feels on the eye; may be it also depends on how much inflammation is going on in the eye. I only know that cyclosporin in corn oil and ointment has not irritated me at ll compared to other preparations I have tried. Sounds like the liposome version would not hurt the eye either.

As far as I know liposomes are like small bbles that deliver substances in tissues more efficiently than everything else used as vehicle in eyedrops, as they are able to cros tissue barriers other vehicles can't.

Wish I could try the same cyclosporine preparation...but i is not available here, already asked. It requires advanced lab methods to be prepared-- I think you have found yourself a very good doctor there...

Good luck,please keep us posted on how that feels....but give it time to work; cyclosporine takes time.

Hope that helps,
Dani

[Susie28]

No burning - great success!

Hi there,
today my ciclosporin with liposomes arrived. It is great - no burning, no itching, nothing. It feels like normal eye drops. Wonderful. And the best thing: it is completly covered by my insurance company! I got a prescription for it from my doctor. Yeah!
The only disadvantage: As it is a handmade solution which manufactured a German drug store, I have to store it in the freezer. That's no problem at normal days, because I have to take it only two times a day. But it might be difficult when I'm traveling. We will see:-)

Now I have to wait about a month before I can see if the ciclosporin helps my dry eyes.

[ringo]

Hi there ,

Could you please tell me the name of the German drug store and how can we get in touch with them?

I will be very very grateful to you!

Thank you so much in advance.

Regards,
Dani

[Susie28]

Hi,
the name of the drugstore is:
Apotheke in der Uhlandstraße

and the address:
Uhlandstraße 5
72072 Tübingen

Tel. +497071-31206
Fax. +497071-4078646

But I don't know if you get these drops without a prescription. ciclosporin is in Germany only available with a prescription.

My local doctor gave my the prescription, then my local drug store contacted the Uhland-drugstore in Tübingen. The Uhland-drugstore manufactured the drops and shipped them to my local drugstore. That's the process:-)

I wish you good look!
But today I have to admit that my eyes are burning a little. I don't know if this comes from the ciclosporine or if its just coincidence....
I'll keep you posted.

[ringo]

Dear Susie,

THANK YOU SO MUCH FOR THE DETAILED INFORMATION!!!

i AM ALSO TAKING COMPOUNDED CYCLOSPORINE, AND ESPECIALLY IN THE BEGINNING, IT BURNT BUT MY DOCTOR PRESCRIBED A MILD STEROID DROP TO COUNTER THIS EFFECT AND TO ACCELERATE THE RESOLUTION OF INFLAMMATION.

THANK YOU AGAIN FOR SHARING,

DANI

[Susie28]

Dear Ringo,
your welcome:-) I hope you'll find a way to get the liposome ciclosporine from Germany. I was told that this drugstore has the patent to manufacture the lipsome ciclosporine so I fear that it isn't possible to get these drops from another drugstore. But I don't know, if this patent is valid outside Europe... perhaps it is no problem to manufacture these drops in the USA.

You wrote that you also had this burning in the beginning of taking cyclosporine. Did you have the burning directly after taking the drops? because in my case, my eyes begin to burn a few hours after taking the drops... Today is the third day of taking ciclosporine and my eyes are still buring... especially when I'm working on the computer. So I think that's not a coincidence.. I fear that this comes from the ciclosporine. Do I have a chance that this burnig goes away after some time because my eyes will get used to the ciclosporine? The burning is still bearable (I know a very much more disturbing burning from the past - when my eyes were the worst), but it still bothers me...
I store the drops in the fridge (that no problem because they have to be stored cool because they are kind of handmade with no preservatives.. I have 15 bottles and if one bottle is opend it has to stay in the fridge) and I use my regular drops 10 minutes before and 10 minutes after using the ciclosporine. but my eyes are still burning after about 2-3 hours after using the ciclosporine:-(
(When I tried restasis - my eyes began to hurt immediatly after putting in the drops and the pain was unbearable - so the liposome solution is still very much better!!!)

[ringo]

Dear Susie,

Thank you again for the valuable information! You have found something really rare, namely a manufacturer of this formula of cyclosporine preparation. I wonder if they would be willing to ship their drops to the Persian Gulf? I live in Dubai.

Regarding the burning-- yes, I have had burning, and all kinds of tough painful sensations in my eyes. But since few people ever expressed much sympathy towards me, I just had to endure it, until I saw my current doctor who prescribed different concentration of cyclosporine, to be taken with FML eyedrop (a mild steroid) and Acular eyedrop (NSAID drop). Also, he prescribed Systane non preserved tears; and cyclosporine ointment 0.2% at night. This ointment feels amazingly soothing to the eyes; it is very liquid gel-like; and never caused me any burning.

I notice though, that you mention you have the burning a few hours after taking the drop. I have it when instilling the drop. Especially when you work on a computer.Welll, I have EXTREME burning when working on a computer, even now at this mpoment, that is why I had to leave my job and many other activities related to computer use. raight now, i have a ton of drops in my ees and dark goggles, so I can write this. Computer use exacerbates my dry eye most of all else; even air conditioning does not hurt as much. You ned to use strong eye protection measures if working on a computer.

I doubt that burning is directly related to the cyclosporine. However, consult your doctor about using one FML drop when you feel the burning.
I also take one pilocarpine tablet a day, which makes tears in my eyes. That reduces stinging from any drops.

Hope that helps,
Dani

[Susie28]

less burning by reducing the dosage

Hey Ringo,
thank you very much for your detailed answer.

I don't know if they can ship the liposome-cyclosporin that far away. It has to be stored in the fridge (at least the opened ones), so I'm not sure if the drops can survive such a long journey.
The other question is, if they give you the drops without a German prescription. The German law is very severe regarding drugs. There are a lots of drugs which you just don't get without a prescription. Perhaps you can ask your doctor and your doctor can contact the German drugstore? Perhaps they can find a solution together. Please keep me posted about this, okay?



I'm quite sure that the burning comes from the cyclosporin because when I skip one dosage - there is no burning.
At the moment I'm using the cyclosporin only before bedtime. In the first days my eyes stinged inspite of the reduced dosage - but meanwhile, they are quite ok. In the next days I'm out of the office, so I'll don't have to work on the computer all day long. I think I'll try to use the drops two times a day in these days. If I can't tolerate the drops, I'll ask my doctor to give me lotemax or another steroid. Thanks for your advice!

[ringo]

Thank you so much Susie fo this invaluable information!

you have given all of us here using cyclosporine alot of hope and an additional source of supplying with this medication.

Thank you again,
Dani

[Susie28]

Another update:-)
Today is my second day with the increased ciclosporine dosage: Since yesterday I've been taking it two times a day, once in the morning and once in the evening. Without computer work its quite tolerable. The eyes burn a little, but thats not that bad.
I'm out of the office for the whole next week - I hope after that familiarization time my eyes will tolerate the ciclosporine during computer work, too!

Altogether the liposome ciclosporine does a great job - with the oil compound I would never have been able to tolerate ciclosporine two times a day!

[ringo]

Susie,

This is great news! Also a week without computer use will do so much good for your eyes.... I wish you continuous improvement and many more positive updates

actually as I have said before working on a computer is devastating for my eyes-- they burn and sting and hurt awfully;

so may be if, as you say, your eyes do not burn when you are not on a computer all day, I would presume that computer usage is the main culprit for your eye burning sensation.

Are you using protective eyewear while on a computer, are you using extra lubrication for your eyes, etc.?Is your vision ok, I mean it does not need any correction with glasses?

Thank you for your update. Keep us posted,
Dani

[Susie28]

Hi there!
Computer work is no big problem for me. Of course, my eyes are very stressed during office work, but it is bearable.
I use ar large monitor (> 24 inch) and enlarge the complete windows configuration (dpi 160 %) I also take a grey background and reduce the brightness of my monitor to 0%.
With this configuration I have to scroll a lot (and my collegues are always astounded when they look at my screen with the large fonts), but for me it's a quite good way to get to grips with computer work for 8-10 hours a day. Have you tried any of these measures? It helped me a lot.
With my old 19 inch monitor and the standard Windows configuration (with small fonts) a would not be able to work on the computer for more then 20 minutes.

Meanwhile I'm completly used to the cyclosporine. It causes 0.0 burning, my eyes are totally normal (normal dry - as dry as before I took the cyclosporine). Today I've been working for 8 hours on the computer (yes I'm out of the office but this was for private further education - I like the stuff of my job :-)) and I had no noticeable eye problems. (Just the normal problems like dryness and mild burning that can be solved by taking a break or using drops)
This would never have been possible with the normal oil compounded cyclosporine! Great success!

How you doing with the cyclosporine? Have you talked to your doctor about ordering it in Germany? I'll keep my fingers crossed for you to get the liposome-cyclosporine, too!!

[ringo]

Hey Susie,

Thanks for the update, still have not discussed any possibility of ordering the medication from Germany.

I am so happy for you and your great tolerance to this new cyclosporine formulation-- I told you it is the least stinging thing you can ever find....

I am sure it will take time though for you to notice improvements with the dryness. It takes time with cyclosporine, especially if you take it on its own, not concomitantly with other medications.

Have you discussed the option of taking secretagogues with your doctor? they stimulate tears and compensate by supplying important substances in natural tears that are deficient in dry eye. They lubricate and nourish the eye surface. Also, they have a synergistic action with cyclosporine.

Thank you for the great ideas about computer use. I am going to try those!

Regards,
Dani