Increased amt of cyclosporine-side effects?

[jenny2008]

I am on Evoxac and it helps tremendously with the dry mouth but does nothing for my eyes..

[ringo]

Hi Ringo!

"Interestingly, normal amount of tears can be produced even if there is only 5-10 percent remaining viable lacrimal tissue in the gland. The actula amount of viable matter in the lacrimal gland usually does not correspond to the amount of tears produced. That is because it is not the gland which is compromised; but due to substances involved in inflammation the function of the receptors of the nerve signalling to the gland are compromised. That is why taking pilocarpine increases tear production, as it is a nerve signalling substance"]

Does the above information you presented come from a specific periodical or journal? Thanks.

Pam

Yes the above information is taken from a textbook on ophthalmology. You can also find it on the net if you search with some keywords. It is a well known fact that dry eye is very rarely cause by a compromised tear gland; the tear gland becomes compromised to some extent only after a long time of dry eye inflammation. the inflammatory substances are interfering with the so called choline muscarinic receptors of the gland, which need to be stimulated by acetylcholine to prompt the gland to excrete tears. however in inflammation and/or damaged corneal nerves (due to Lasik for ex.), this nerve signaling process is disrupted.

Pilocarpine and evoxac are substitutes for acetylcholine,and they managed to work coz for some reason in dry eye there are "extra" receptors to which these medications bind. However, in most people, time is needed to notice the difference, as the tissues of the eye are desiccated, and they only get moister over time. When I was taking pilocarpine initially, I had to take 4-5 tablets with hardly any difference. But with the cyclosporine over time now even one tablet per day produces a lot of tears. So it has something to do with suppressing inflammation and stimulating the nerve signalling process at the same time.

Yes, certainly cyclosporine works on the meiboian glands, but restasis is hopeless for severe cases as it only contains 0.05 % cyclosporine.

I must say though that it took 2 months on the 2 % dose after gradually increasing to notice the significant results. Today I saw my eyes exactly as they were 4-5 years ago before all this started. But now they look and feel worse as I have been on the computer for a long time.

But now i know-- there is a way out of this.It takes a lot of patience, and persistence even if it looks like nothing is working. Eventually it works in the right doses over time. I am making tears. And my eyes are wide open. And the pain is not there most of the time. in summer of 2008 I was hospitalized with severe dry eyes and corneal erosions, I had zero tears and my eyes were just two bloodshot slits. If my doctor from that time sees me now, she would not believe it is me.

My doctor now is ecstatic-- he keeps showing my eyes to his colleagues! And they all agree that the major treatment for dry eye is cyclosporine. there are adjunct medications like mild steroids to prevent sensitivity and aid in the initial stages of inflammation; but I was only on restasis,steroids and NSAIDS for more than 6 months and there was no improvement except some reduction in symptoms and healing of the erosions. Which for me at that time was a miracle of course.

one more thig-- very slowly but surely, the cyclosporine is removing the mucous strands, which are so painful and disgusting. Thank God for that.

will keep you posted on my progress.

Thank you all for your replies!

God bless you

[jenny2008]

Hey Ringo! What an awesome post! My doc prescribed a higher dose of Cyclosporin and I should get it tonight at my house! I am going to try it tomorrow after work and hope I can tolerate it since you are the 2nd person on here to say that it really has helped you! It seems to have changed your life-that is what I need. I don't expect to be cured ! but to just be somewhat better and more manageable !!!

So happy for you!

[willwork4tears]

I'm up to 1% now and it's day 3 in a row with tears. I'm loving it!

[ringo]

Hi Jenny and WillWorkForTears!

Thank you for your feedback. I am so glad that the cyclosporine is working for you...and you are only at day 3! It took me about 2 months on 2% after 2 months on 1% and 3 months on 0.2% to notice any differrence in the actual amount of tears and the swelling of the cornea. However, the comfort of course was increased tremendously almost from the very beginning I started the higher cyclosporine doses.

May be my case was so severe, that is why it takes an awful amount of time, and I am still having a long way to go to be anything close to healthy eyes, but now I know there is a way for improvement, and that keeps me hopeful and patient.

There was one day, like 2 days ago when even my worse eye was making fresh soothing cool tears on its own (not the tears it was making due to the irriation, they were horrible). Then the next day, may be coz i took sedative, it became a bit worse, but still now today it is very comfortable again!

I have a doctor's appointment tomorrow, will keep you posted.

Good luck!

[odydnas]

Yes, certainly cyclosporine works on the meiboian glands, but restasis is hopeless for severe cases as it only contains 0.05 % cyclosporine.

Hi Ringo! Where did you get that information from?

I do not have decreased lacrimal function, but I do have MGD.

Also, how are all of able to get cyclosporine in so many difference concentrations??? Do you just get your doctor to write a prescription for a ton of different concentrations for you to buy and try out?

Also, wow Ringo!! Your improvement has been amazing!!

[ringo]

Hi Odydnas,

When the doctor saw that I am improving with 0.2%, he decided to see what happens with 1%. Then when he saw that there was even further improvement he decided to go for the maximum used dose in an attempt to stop any other drops altogether ,i.e. FML, Akular. It was not planned from the beginning, but worked out well coz it improved the tolerance to the gradually increased dose.

Unfortunately I am unable to quote accurately the source of the information on the disruption of nerve signalling in dry eye, as I was reading it on e-books and papers from paid electronic libraries; I even copied, pasted and printed excerpts which I have at home, but have not recorded the source. Anyway I am sure that if you search for this info online you will find it.

What all scientists and doctors agree with for now is that cyclosporine is the only safe medication that TREATS dry eye and not only masks symptoms like everything else, including steroids.

Hi Ringo! Where did you get that information from?

I do not have decreased lacrimal function, but I do have MGD.

Also, how are all of able to get cyclosporine in so many difference concentrations??? Do you just get your doctor to write a prescription for a ton of different concentrations for you to buy and try out?

Also, wow Ringo!! Your improvement has been amazing!!

[indrep]

I have posted the book name on this site before (it was heavily sponsored by a drug company). Not only does it explain it has pictures for the more visual of us to understand. I have power point slides of them and will get them to Rebecca before our chat and hopefully she can display them for everyone to see.

I think Ringo's statement could better be stated that, "That all scientists and doctors agree that cyclosporine is the only FDA approved drug for the treatment of dry eye and that many doctors prescribe it.

What all scientists and doctors agree with for now is that cyclosporine is the only safe medication that TREATS dry eye and not only masks symptoms like everything else, including steroids.

My personal experience across most of the country is that docotrs are still looking for a better treatment weather its approved as a drug or not. I could go into quite a bit of detail on this however it would be boring to most.

I am very glad that ringo is getting relief.

[ringo]

Thank you indrep,

I visited my doctor today and she said there is further improvement in tear break up time and the tear flow has increased to 9mm and 11 mm (that is double what i had a few months ago). Also she says the inflammation is virtually not detectable any more.

Of course researchers are still looking for a cure for dry eye, but for now it looks like immunosuppressants the kind of cyclosporine (sirolimus, pimecrolimus,tacrolimus, etc.) act most efficiently.

I have reduced using artificial tears to once a day; I was using them every 10 minutes with almost no relief. That is enough to demonstrate the power of cyclosporine over time. Of course I have my eyes plugged so that might be helping the drug to stay longer on the surface of the eye, and traps the "de-inflamed" by the drug tears ont he surface. So I am sure the plugs are helping too.

I hope that this progress will be sustainable and I will have a lasting improvement until doctors indeed find something more eficient than immunosuppressants.

By the way, what are you using for your dry eye?

Thank you.
Regards,