Nerve growth factor to be available soon!!!

[zoso967]

Nerve growth factor to be available soon for the treatment of corneal ulcers

All we lasik/neurotrophic sufferers should be able to get this off label too ...

I really believe this is the "magic goop" one other DYZ member was looking for.
Unfortunately, it will probably only work in people with corneal nerve damage or corneal ulcers....I think ... I hope it works for everyone

[Hopeful2]

Hi there zoso967!

Well that sounds like fantastic news! I haven't opened the link, eyes too sore.

There are quite a few people here on DEZ who have made various posts inquiring about this nerve growth factor. Any news when it will be available?

Thanks for posting this!!

[zoso967]

My lasik surgeon was in Vienna two weeks ago and he was supposed to seek out these drs and see what he could find out.
As it turns out they made this announcement @ that conference.
Unfortunately, my surgeon has not yet contacted me but I have left several messages and expect to hear back soon ...

I'll keep you posted ...

P.S. It is supposed to go through a trial in Europe in early 2012 and should become available soon after that. I'm not sure how FDA approval works but you and your doctor should be able to try it ...

[zoso967]

FYI, I think I found the manufaturor: http://anabasispharma.com/technology/ngf.aspx
I will be speaking with my surgeon today. Details to follow ...

[zoso967]

No Dice Until Q2-3 of 2012

I spoke with my Lasik surgeon and the NGF drops from Italy are not going to be available until the 2nd or 3rd quarter of 2012. Even then it will be only for clinical trials which means you never know if you're getting a placebo or if the drugs will be available to you after the study.

We also waiting for Mimetogen's MIM-D3 phase III dry eye study to begin. But again, will I get the drug or placebo? Will I be cutoff afterwards?

So, I have decided, together with my Lasik surgeon, to make our own NGF drops under semi-sterile conditions. I know there are risks but the rewards are huge and my options are few.

Today, I wll chose 2-3 labs based on reputation, time in business etc ... Then my Dr and I will choose the product and make the drops in his lab.

In the meanwhile my surgeon is ordering confocal microcopy of my cornea to view the nerve plexus. If it is indeed abnormal he feels that the risk is low and the possible reward is high.

NGF seems to be very safe. However, I have some concerns. Will it make the pain sensing neurons more sensitive translating to more pain? Will the mild angiogenic effect cause corneal angiogenesis? Can I do anyting about it if it does?

I was an unknowing lasik guinea pig. now i am a willing participant in a very experimental dry eye disease treatment...

[tearless2]

Is your Dr interested in writing your case up as a single case research study? Has anyone else ever done this? Perhaps he'll publish his results.

[dryeyes2011]

zoso967 do you have any updates on your use of NGF eye drops? Very curious, thank you

[Cristi]

Hello zoso967,

do you have any news regarding these NGF drops?
Thanks a lot!

[Cristi]

Hello everyone,

I have some news regarding these NGF drops.
The answer from the italian company is that for now the eye drops are in preclinical development. The efficacy trials on patients will begin towards the middle of next year and, if all goes well, the eye drops will be on the market no sooner than 2015.

So for now it seems that we all have to wait and see what happens...

[zoso967]

NGF Eye Drops

Hello,

I am sorry I have not been on in a while.

Cristi, you spoke to someone @ Dompé? My understanding was that they will be doing clinical trials 2-3rd qtr this year. I have asked to be in the clinical trials and my Dr and I are waiting to hear from them.

If anything happens I'll let you know.

Best regards,

zoso

[cvowr]

Did you start using the NGF?

Hello,

I am sorry I have not been on in a while.

Cristi, you spoke to someone @ Dompé? My understanding was that they will be doing clinical trials 2-3rd qtr this year. I have asked to be in the clinical trials and my Dr and I are waiting to hear from them.

If anything happens I'll let you know.

Best regards,

zoso

Hi zoso,

Did you start using the NGF? I also want to participate in the tests. I have dry eye because of accident with UVC. See my case (http://www.dryeyezone.com/talk/showt...ght=#post68234). According to this site (http://wwww.uvlightburns.com/id17.html), the ultraviolet light of broken metal halide bulb is responsible for neuronal alterations (corneal neuropathy), which can cause dry eye. Once I have more time I do corneal confocal microscopy.

Help me please!

Hugs ...

[Cristi]

Hello everybody
I spoke with someone at Anabasis Pharma aka DOmpe. But we didn't get any other information except this one. As soon as I have some answers I'll post here.
Zoso, have you had the confocal microscopy? What are your results? I'd like to have one too but I guess it's too early to tel (I'm 5 months post lasik).
Thanks

[zoso967]

Confocal Microscopy

Hello Cristi,

I did have the confocal microscopy. It cost ~$300 since my insurance doesn't cover it.

My Dr was very cryptic about the results. She said that "there is nothing there that i see that would cause a problem". This is a Dr that was in a study that measured corneal nerves and sensitivity in patients treated with Amniotic Membrane so I assume she knows what to look for.

Before I received my results she told me she would review the images with her Chairman and let me know.

Well, I have met the chairman before while visiting him for Demodex testing. He told me that my corneas are crystal clear and I should just forget about the dry eye and move on with my life. Uh, doc? I just want to know if I have a Demodex problem ... which I do not.

I asked my Dr if the nerves in my cornea appear normal and I got the response above. So I tried to get her to commit to an answer. Do my eyes look normal? Normal for virgin eyes? Lasik eyes? etc ... She would not give me a concrete answer. It just totally smacked of Dr's protecting Dr's.

I looked at the scans myself and compared them to normal eye scans you can find readily on Google Images. I saw the images of nerves spreading out in all directions. But when I looked at my scan, while I do see nerves, I see many fewer than i do in the normal cornea.

I pushed on like how could my eyes look normal if I have had lasik. Surely you can see that i had lasik. Yes, she could. But I could tell I was not getting the full story. She was very uncomfortable the whole time and she was trying to end the conversation ASAP.

So, I am glad I paid the extra $25 to get my own copies. I am going to look for a second opinion.

Best,

zoso967