Nerve growth factor direct from Alomone labs,

[quattroboy]

Hi all, another one from me.

After seeing Mr. Walker got plenty of things to think about and tackle. This is both good and bad.

I think I want to tackle the whole nerve thing sooner rather than later.

So NGF seems to be the agreed treatment. Personally, for me, Prokera is top of the list and still trying to find a doctor near me willing to give it a try.

I'm keeping PRP drops (which would be via Prof Alio in Spain) and newer PRGf (might be able to get from dry eye center in London if the lady I know can pull it off) drops in reserve.

Mr. Walker is still keen on Oxervate but very new, costly, hard to source and simply not available on the NHS here in the UK.

He suggested self-mixing obtaining the NGF from Alomone and adding saline. Apparently googling would allow me to work out what to order and how to do it.

Struggling so looking for advice on this, I know hosanna13 has done it so sent a PM but she's not been on for ages.

So anyone else knows about this?

Big thanks in advance.

[deep_dry_eye]

Why not give Prokera a try? Is it hard to source in the UK? It's around 1.5k CAD in Toronto, Canada. Might be worth a trip here . With flights, aribnb, etc... probably cost you 4-5k CAD total roundtrip for a 2 wk stay.

[quattroboy]

Why not give Prokera a try? Is it hard to source in the UK? It's around 1.5k CAD in Toronto, Canada. Might be worth a trip here . With flights, aribnb, etc... probably cost you 4-5k CAD total roundtrip for a 2 wk stay.

Yes, that is my preferred option, just getting all my facts together.

I may have found a doc/consultant local to me (Manchester UK) sending a query email today to his private secretary. Who is on holiday (vacation) until Monday.

Honestly, I'm a bit jealous of how easy it appears to be in the US and Canada to access doctors, of course assuming your bank balance is big enough or you have the correct insurance in place.

The NHS dominates health care in the Uk, private is an option via personal pay or insurance, it's a lot harder to seek out experts, even harder with niche stuff like dry eyes and specialists treatments.

An example we don't have the concept of independent compound pharmacies, hence the issue we have with serum drop access and people traveling to Spain.

[deep_dry_eye]

Yes, that is my preferred option, just getting all my facts together.

I may have found a doc/consultant local to me (Manchester UK) sending a query email today to his private secretary. Who is on holiday (vacation) until Monday.

Honestly, I'm a bit jealous of how easy it appears to be in the US and Canada to access doctors, of course assuming your bank balance is big enough or you have the correct insurance in place.

The NHS dominates health care in the Uk, private is an option via personal pay or insurance, it's a lot harder to seek out experts, even harder with niche stuff like dry eyes and specialists treatments.

An example we don't have the concept of independent compound pharmacies, hence the issue we have with serum drop access and people traveling to Spain.

I visited 10+ drs around the world to find my dr. Our (OHIP) public health care system does not cover optometry or dry eyes.

UK has access to Azyter which we don't have access to, but we have access to Xiidra. Grass is always greener on the other side

[Meibum Ian]

He suggested self-mixing obtaining the NGF from Alomone and adding saline. Apparently googling would allow me to work out what to order and how to do it.

Are there any clinical trials showing the safety and efficacy of this?

Any good reason he prefers this over autologous drops?

[quattroboy]

Are there any clinical trials showing the safety and efficacy of this?

Any good reason he prefers this over autologous drops?

Hi Meibum Ian No basically! Of course Oxervate has shown good results with neurotrophic keratitis. I think he was just thinking outside the box and Oxervate is pure recombinant human nerve growth factor, backed by clinic trails.

Honestly I don't know why he has doubts about autologous drops. My personnel thought is the lack of experience in the UK with them.

[Meibum Ian]

Don't think I'd want to make myself a guinea pig for this (not oxervate, but the roll-your-own option) while there's science supporting other options.

[quattroboy]

Don't think I'd want to make myself a guinea pig for this (not oxervate, but the roll-your-own option) while there's science supporting other options.

I tend to agree, TBH. But I've not totally dismissed the idea.

But I've not dismissed it. Trying to push forward on the AMT front.

[Guest]

I visited 10+ drs around the world to find my dr. Our (OHIP) public health care system does not cover optometry or dry eyes.

UK has access to Azyter which we don't have access to, but we have access to Xiidra. Grass is always greener on the other side

I know this is an old post from you... but in case you happen to see my reply... Manitoba (where I'm from) is the same in terms of no coverage for optometry. BUT, for dry eye that is not fixed via your optometrist, ask them to refer you to an ophthalmologist who is a corneal specialist - they have access to prescription treatments that an optometrist can't provide, and their care is probably covered under OHIP since they are an MD. If your optometrist won't refer you to a corneal specialist, find one who will. Alternatively, ask your family doctor to refer you to a corneal specialist. And if you don't have a family doctor, go to a walk-in clinic and ask for a referral to a an ophthalmologist who is a corneal specialist. Good luck!

[deep_dry_eye]

I know this is an old post from you... but in case you happen to see my reply... Manitoba (where I'm from) is the same in terms of no coverage for optometry. BUT, for dry eye that is not fixed via your optometrist, ask them to refer you to an ophthalmologist who is a corneal specialist - they have access to prescription treatments that an optometrist can't provide, and their care is probably covered under OHIP since they are an MD. If your optometrist won't refer you to a corneal specialist, find one who will. Alternatively, ask your family doctor to refer you to a corneal specialist. And if you don't have a family doctor, go to a walk-in clinic and ask for a referral to a an ophthalmologist who is a corneal specialist. Good luck!

I find most ophthalmologist (even corneal specialists) to not care or does not have the expertise/equipment to deal with dry eyes. One corneal specialist I saw in Ontario just sent me home, told me I just have to live with pain the rest of my life, but the good news is I won't go blind.

Unfortunately, dry eyes/MGD is not a disease taught in our medical schools, and many practitioners are not equipped to diagnose nevermind treat. The best care I've received are optometrists who have a specialty practice in dry eyes, specifically they tend to have more equipment as well (i.e., IPL/LipiFlow) which ophthalmologists in a hospital setting do not.

[Guest]

deep_dry_eye I definitely agree with you that most ophthalmologists either fail to appreciate the impact of severe dry eye on one's life and don't care, or flat out have no interest in learning.

That being said, I can still be worth looking for a good one to add to your team since when you find one who cares, they are very useful due to their ability to prescribe things such as Restasis or perform minor surgical procedures (ex. cautery, if needed) that an optometrist can't. I found my corneal specialist through an optometrist... the optometrist did everything they could for me, but we hit a wall. So the optometrist (I think because they had an interest in dry eye), had a good sense of which corneal specialists were GOOD and actually cared, vs. those who didn't... I got my referral to my current corneal specialist through my optometrist.

Anyhow, for whatever it's worth, sending good vibes your way. Take care!!!

[deep_dry_eye]

deep_dry_eye I definitely agree with you that most ophthalmologists either fail to appreciate the impact of severe dry eye on one's life and don't care, or flat out have no interest in learning.

That being said, I can still be worth looking for a good one to add to your team since when you find one who cares, they are very useful due to their ability to prescribe things such as Restasis or perform minor surgical procedures (ex. cautery, if needed) that an optometrist can't. I found my corneal specialist through an optometrist... the optometrist did everything they could for me, but we hit a wall. So the optometrist (I think because they had an interest in dry eye), had a good sense of which corneal specialists were GOOD and actually cared, vs. those who didn't... I got my referral to my current corneal specialist through my optometrist.

Anyhow, for whatever it's worth, sending good vibes your way. Take care!!!

In Ontario, optometrists can prescribe Restasis / Xiidra. I haven't had to do any surgical op yet , but thanks for the tip!

[Guest]

In Ontario, optometrists can prescribe Restasis / Xiidra. I haven't had to do any surgical op yet , but thanks for the tip!

Oh, cool! I had no idea!