N-Acetylcysteine Drops

[Delilah]

Hello Everyone I now found a compound pharmacist to make the N-Acetylcysteine eye drops for my FK, which I have been sufferening from for 3 years now. My eyes are getting worse and worse, the stringy mucus is the most bothersome, which is constantly hounding me day and night. I am now waiting for these drops which have been extremely hard to get. I have been waiting a week now, I am so desperate to try these, hoping that it will solve this mess in my eyes, at least it will provide comfort and relief so I am not totally consumed 24-7 with these horrible strings coming out of my poor eyes As for the severe dry eye I just have been doing the warm compresses and tons of other lubricating drops. I will let you all know when I start using these new drops and let you know if they work or if its just more money down the drain. Hope everyone is doing good. Delilah

[Lucy]

Delilah, I hope these drops provide some relief for you and your problem. As bad as dry eyes are, I just can't imagine dealing with FK in addition. I'll keep my fingers crossed for you. Please know we all hope this is your "fix."

[shells]

Hi Delilah,

I just wanted to second what Lucy said! I really hope that this is what you've been looking for! Please keep us posted on any progress you experience after starting the drops. Good luck!

-Shells

[Cindy]

Hi Delilah, Echoing Lucy and Shells and wishing you some relief. Thanks for keeping us updated.

[Delilah]

Thank-you Everyone!!

I wanted to say Thank-you to all of you for your support. Well since I live in a small town and no one has ever had to make these drops they want to do more research. I e-mailed Dr.G and Dr.H and asked for their advice. If any of you know anyone who has used these drops please let me know. My pharmacist wanted to know if it was okay if she made them with the preservatives or if she had to make the drops with the powder form and do it without any preservatives? She was afraid she'd make me go blind!!!!! I read on the post about the FK that you can make them with or without preservatives.
Since I do live in a small town there is no compounding labs here except far away in another town, if they have to make them "without" preservatives then it will cost about $200.00!!!!!! I wanted to try them with preservatives but I am not sure and I am afraid because I haven't heard of anyone else that has used these drops?? Making them with preservatives is cheaper, if anyone has any information on these drops and anyone that knows if they are good please let me know.
I was even going to see if I could get a hold of a pharmacist in the UK since I seen they make them there a lot. Also another question do any of you really think that my "cigarette smoking" caused my dry eye and my FK? I've been smoking for about 10 years now and I know its horrible and bad, but I never had any trouble with my eyes, my uncle said that it could just of came upon me all of a sudden, he said smoking affects people differently. Anyway's I'll stop from here lol, Thank-you all for your support and I hope that you all are doing good and find cures for your eye troubles. Hope that Adam is recovering good too Whether your young or old, eye trouble is something I never knew could be this troublesome for everyone Ciao Delilah

[DrG]

Delilah,

First of all, have you been to a doctor lately who has actually diagnosed you with "filamentary keratitis"? I know I have mentioned this as a possibility, but it needs to be confirmed. Then, the doctor needs to write a prescription for the N-acetylcysteine. It is available commercially in 10% and 20% strengths, sterile, non-preserved as Mycomyst or Mycosil for inhalation therapy. The 10% solution can be used topically.

N-Acetylcysteine can also be compounded. Non-preserved solutions have an extremely short shelf-life at room temperature, and will maybe last a week in the refrigerator. Preserved solutions can last one month.

[dianat]

Keep us posted, Delilah. I also will pray that the drops are the solution to your problem.

[Delilah]

Dr. G

Dr. G, I know this is what I have this FK, there isn't any other eye problem that goes into full detail like the FK, all the symptoms and these musos strings I suffer from go with the FK, all the eye doctors I have gone to know nothing, even giving me stuff for cataracts which is totally absurd. The eye specialist in Salt Lake wasn't even worth going to, he saw me for 15 minutes while I waited 2 hours to see him and drove all that way from Idaho to Utah. I guess I could go to this other eye doctor I see, which I don't like him because he doesn't know what in the hell is going on. I wish you were closer, you sound like you know so much more about eyes. I also wanted to thank-you and everyone else for your support and advice and help. Thank-you Delilah

[kitty]

Moran Eye Institute

Delilah, I do not know who you saw in SLC, but the Moran Eye Institute at the University of Utah has a very good reputation. I worked with an occular infectious disease specialist from there who was very impressive, Nick Mamalis M.D. His specialty is ophthalmic pathology. If he can't see you, I'm sure an associate can. Moran Eye Institute

To schedule an appointment

[jp2084]

Delilah,
I noticed you mentioned mucus in your eyes. I've had dry eyes for about 10 years now--I'm 31. In the beginning when I had the mucus I would fish it out, which actually causes more mucus. i don't know if you 'fish' it out, but don't. it seems like common sense, but it's so bothersome that you don't think about it. Also, let me know how those drops work. I was looking at NAC N-acetylcysteine as a supplement. Have you heard of this working for dry eye or blepharitis. The only thing that's worked for me are biotears, from biosyntrx at www.biosyntrx.com. Also, nobody needs to tell you this, but smoking is absolutely horrific for your eyes. If you stop, I bet you your condition will dramatically improve.

[Delilah]

Mucus Fishing

First I wanted to say Thank-you to all of you who replied to me and are giving your help and advice to me. About the mucus fishing, well I just don't know what to do, maybe I have made it worse because yes I am constantly fishing out these strings. If I try to leave my eyes alone they block my eye sight, get in the way of me being able to see, so I pull them out, what else am I suppose to do? JP how did you stop your mucus fishing? Did it finally go away with you not bothering your eyes for a numerous amount of days, even though it was driving you insane?
For Dr. G, well I did go to the Moran Eye Clinic and I heard it had a good reputation and I seen Dr. Olsen, I was so damn mad because I spent hundreds of dollars to go see him, he never ever did any sort of TBUT or schrimmer tests, he only looked at me for like 15 minutes, said I had MGD, to quit smoking and do warm compresses, wrote out a perscription for Alomide and sent me on my way.
Maybe I should see the other doctor, his last name sounds Greek? He's probably a lot smarter and more knowledgable than Dr. Olsen, it made me so mad to go all that way and him not do any testing or spend more time with me, I had more questions, he knew I came all that way just to see him, I waited 2 hours just to get into the room, then he gives me 15 minutes of his time, before I had been to numerous eye doctors before I was sent to him.
I was also diagosed with Lattice Degeneration and that really frightened me.
So what I am gonna do is really quit smoking this time, Im getting some of those lozenges, nicorette or something like that, Im gonna try my best not too touch my eyes and I go see my local eye doctor on Thursday and hopefully he can perscribe me those NAC drops.
I take the NAC supplements but they have done nothing for me, they just give me really bad skin outbreaks. Again thank-you all for your advice and help. Delilah

[DrG]

Delilah,

Filamentary keratitis is quite apparent with a simple slit lamp examination. There is no other test. It is either there, or it isn't.

I agree with the previous poster about mucus fishing syndrome. In fact, I started a thread on this awhile back. One of our well-known local ophthalmologists, Dr. McCulley, coined this term back in 1984. Your dry eye or MGD may initiate the mucus, but your constant attempt to remove it causes additional eye irritation and additional mucus formation.

Prior to reading this bulletin board, I have never, ever heard of using N-acetylcysteine orally, although I was quite familiar with the topical applications.

Having said that, I am going to duck and run for cover because I am sure that someone out there is going to put me straight about the miracles of "oral" N-acetylcysteine.

[jcorbett]

You can come out now!

Dr. G, you don't have to duck and run from me!
I take n-acetyl-l-cysteine/Gluthathione supplements. There are more posts about it under the nutrional supplements category, or whatever that category is called, if anyone is interested in reading more.
Some people have had very good results taking this. I started taking it, and noticed my eyes improved. Coincidence? I don't know. I just know I am not stopping! It seemed to help the redness and irritation, and I have not had blepharitis since then.

[kaypeeoh]

[QUOTE=Delilah] amount of days, even though it was driving you insane?
For Dr. G, well I did go to the Moran Eye Clinic and I heard it had a good reputation and I seen Dr. Olsen, I was so damn mad because I spent hundreds of dollars to go see him, he never ever did any sort of TBUT or schrimmer tests, he only looked at me for like 15 minutes, said I had MGD, to quit smoking and do warm compresses, wrote out a perscription for Alomide and sent me on my way. [QUOTE=Delilah]


Moran is where I had LASIK in 1997. When I went back a couple years ago I was seen by someone doing a Fellowship. The new cornea guy is named Moshifar but I never saw him. The Fellowship guy suggested sticking with RGPs and gave me a prescription for Restasis.

[Delilah]

Thank-you Everyone

Well I go to the doctor on Monday and Im gonna try these NAC drops, I tried taking the NAC and Gluth suplements but they didn't help me. I would like to go to a good eye doctor that knows what he's doing and would spend time with me, do tests, give me facts and listen to what I am going through instead of just perscribing drops and sending me on my way. So I am going to make an appointment in Salt Lake once again to see another doctor at the Moran Eye Institute, if that doesn't work the I was wondering Dr.G if you would see me?
I am not sure where your located, but suffering now for 3 years I would fly anywhere to see a doctor that knows what he's doing and hopefully give me some solid answers, do tests, give me the results and give me options. So Dr. G will you please tell me where your office is, how much your office visits are for new patients so in case the Moran Eye Institute doesn't do me any good once again. I will be paying with cash since I have no insurance, as I graduated and have no more college insurance. Thanks to everyone and God Bless everyone too I will let you all know once I get those eye drops and see if they are working.
Also I was never diagnosed with FK, I just sort of diagnosed myself after Dr. G described it and it seemed like the puzzle fit perfect for what I have. I've stayed away before not touching my eyes and the damn strings still come out of my eyes, I don't know what to do anymore, guess just pray and keep living, although I am miserable with my eyes, I am still a very loving, kind fun person and I do enjoy life, I will never ever give up on life and I will never ever give up on a cure for my eyes
I feel that there are people suffering from far worse than I am, at least I still can see and I have all my body parts, it maybe a sort of twisted way to look at things but I find that if I think of people who have it worse, I am not as bad and I should be grateful I can even see But then again all I want is a cure for my eyes, not too mention my eye sight is getting worse. I'll keep you all posted. Ciao for now Delilah