How do I get Ikervis in the UK?

[Alix]

I have been suffering from dry eye (non-stop burning and bloodshot eyes) since last December. So far nothing has worked - eye drops/ointments/vitamin supplements/warm eye compresses/punctal plugs/FML steroids.

The ophthalmologists at Moorfields say they cannot give me anything stronger, as it is for people who have corneal damage. I do not have keratitis, only dry spots - nevertheless the burning sensation is debilitating. So I now want to try Ikervis, even though the success rate is not very high.

I have my next appointment at Moorfields in 2 weeks time - how do I get the doctor there to prescribe me Ikervis if I do not have keratitis?
If they will not give me this on the NHS, how do I go about getting this prescribed privately? Will the Dry Eye Centre in London give this to me for example if I pay?

Also those of you who have used Ikervis, did you see any improvement and how long did it take?

Thank you in advance.

[Meibum Ian]

Ridiculous that Moorfields will not prescribe this for you (for the reason given, at least). Ikervis is approved by NICE for "treating dry eye disease that has not improved despite treatment with artificial tears": https://www.nice.org.uk/guidance/ta3...tion-document2

Sorry that you have this frustration. NHS has also been very unhelpful for me.

Ikervis can be prescribed privately, either by an ophthalmologist or an optometrist who is an IP (Independent Prescriber). Dry Eye Centre can prescribe it privately as Caroline there is an IP. It will cost about £90/month from Boots.

Whoever prescribes it can also write to your GP who would then be able to prescribe it to you via the NHS, in theory at least. I think this is more likely to work if the prescriber is an ophthalmologist. I am going through this at the moment, but there is some extra complication because of the NHS authority rules in my part of the UK.

I have an ophthalmologist trying to make the case for NHS prescribing of Ikervis for me at the moment. Feel free to PM me for details.

[Alix]

I meet all the requirements for being prescribed Ikervis except that I do not have Keratitis. I am prepared to pay the £90 pounds - if I tell the ophthalmologist this the next time I am at Moorfields they would be more likely to prescribe me this?

[Meibum Ian]

I'm not sure that you would / can get a private prescription from an NHS appointment. But you can from a private appointment.

[Alix]

Ok, I am trying to get an appointment at the Dry Eye Centre in London.

[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.

[MGD1701]

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

Can not agree more.

[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.

[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.

[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?

[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.

[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.

[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]

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.

[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.