How do I get Ikervis in the UK?

[quattroboy]

I am sure nerve damage is one factor for me. I also have Rosacea which all started after LASIK.

Why AMT is better for you? I do not have access to confocal here in Canada. Otherwise, I would get it.

I also have mild MGD.

Growth factors are the treatment for nerve damage.

Serum drops would also help but very hard to get in the UK and expensive (£500 per month).

Oxervate was Mr. Walker suggestion but it's cutting-edge, just licensed in both Europe and US. NHS have withdrawn access to it because of it's cost (£15k I've read for 8 weeks).

That leaves AMT (prokera) which is more readily available in the UK from Scope at around £1500 per eye. Still searching for someone locally who will give it ago. So far only found suggestions are in London.

[ebi1368]

My problem is nerve damage so growth factors is what I need, which includes serum drops (AST, PRP, PRGf), AMT (Prokera ideally for me) or Oxervate (brand new just licensed).

What is the route cause of your dry eye apart form LASIK MGD, AD?

I am sure nerve damage is one factor for me. I also have Rosacea which all started after lasik.

Why AMT is better for you? I do not have access to confocal here in Canada. Otherwise I would get it.

[quattroboy]

Nerve damage
How to detect this and what are symptoms/causes? Thanks.

Well poking the eye with the sharp corner of a rolled up tissue and watching your reaction. Mr. Walker could poke my right eye all day long!

Going for a confocal microscopy on the 18th, for a second opinion.

[MGD1701]

Nerve damage
How to detect this and what are symptoms/causes? Thanks.

[quattroboy]

I am 6 m post lasik.

Is there any evidence that Prokera can help Lasik dry eye?
I searched the forum and just found one person who benefited from prokera. He was post lasik but mostly AD.

My problem is nerve damage so growth factors is what I need, which includes serum drops (AST, PRP, PRGf), AMT (Prokera ideally for me) or Oxervate (brand new just licensed).

What is the route cause of your dry eye apart form LASIK MGD, AD?

[ebi1368]

I agree that's bonkers!

My NHS consultant prescribed Ikervis alongside 2-month course of Dropodex steroids.

You need to speak to another specialist, Dry Eye Centre seems to get decent reviews.

Never trust one specialist's opinion, they all have prejudices and blindsides.

I wish to try Prokera but can't find anyone local to me prepared to give it a chance. I have one contact down in London town but I'm in Stockport, so not ideal for traveling with a Prokera in my eye.

I am 6 m post lasik.

Is there any evidence that Prokera can help Lasik dry eye?
I searched the forum and just found one person who benefited from prokera. He was post lasik but mostly AD.

[Alix]

I agree with you. To think that the last doctor told me that I should blink more. This is not a valid solution to someone suffering 24/7 for more than 9 months.
Also apologies for the spelling/grammatical mistakes, I am all over the place at the moment.

[MGD1701]

If doctors are reluctant to prescribe medication because of the costs,
they should at least tell us this medication might help but on our own pocket.
Who gives them such right to decide our health/life? What can we do? Keep trying.

[Alix]

@MGD1701 I honestly believe that NHS doctors are reluctant to prescribe medication because of the expense incurred.
I now have a private consultation lined up so I am hoping to find answers from that. I do not care any more about the cost, I will pay for whatever medication is required.
It is good (if that is the right word) to know that there are people out there who are in the same boat.

[Alix]

@quattroboy I am sorry to hear your story....I don't know for sure what is the cause of my dry eyes. The opticians I saw at the beginning told me I had MGD, but the hot compresses was told to do do did not have any effect so I am not sure this is correct. The general consensus amongst the doctors I have seen at Moorfields is that I have evaporative dry eye due to poor quality of tears which is causing an unstable tear film. I had puncal plugs put in but my eyes because very itchy, a new sensation. Blepharatis has been ruled out. I am at my wits end.

[MGD1701]

The ophthalmologists at Moorfields say they cannot give me anything stronger, as it is for people who have corneal damage.

When the corneal is damaged, Ikervis is too late to stop progession?
If untreated, later we (not doctors) pay the price for LipiFlow, IPL etc.???

When people have pain with red eyes and use lots of drops daily - this is serious enough.
If doctors just recommend drops, are they qualified to be (dry) eye doctors or the health system is to blame?

[quattroboy]

Alix I've had dry eye since LASIK in November 2017.

I struggled on my own until I saw my consultant in early June.

I took a long list of symptoms, including my mental health, and everything I'd tried and failed with. OTC drops, ointments, lid scrubs.

Also, a timeline of events to show how things had progressed.

Do you know the course of your dry eyes? MGD, lack of tears, blepharitis etc.

[Alix]

@quattroboy How long had you had dry eye symptoms before having Ikervis prescribed? I have been suffering since last December.... my first appointment at Moorfields was at Easter and I have been going back and forth since then, a complete waste of time. So I have now managed to get an appointment at the Dry Eye Centre, I am desperate for the burning pain to go away.

[MGD1701]

Never trust one specialist's opinion, they all have prejudices and blindsides.

Can not agree more.

[quattroboy]

I agree that's bonkers!

My NHS consultant prescribed Ikervis alongside 2-month course of Dropodex steroids.

You need to speak to another specialist, Dry Eye Centre seems to get decent reviews.

Never trust one specialist's opinion, they all have prejudices and blindsides.

I wish to try Prokera but can't find anyone local to me prepared to give it a chance. I have one contact down in London town but I'm in Stockport, so not ideal for traveling with a Prokera in my eye.