How do I get Ikervis in the UK?

[Yzhfd]

I got 2 boxes ikervis and restasis prescription that I don't use anymore, anyone wanna buy cheap?

[Alix]

Hey. I have the same question. Have you already solved your problem?

Hi yes I got a private prescription. I have to pay full price for it but it's better than not having it at all....

[Alix]

You mention very itchy eyes? I would check for allergies could be possible. They check your eye lids on the inside to see about this. I hope this helps!

Hi the only time I got itchy eyes was when I had the punctal plugs in this summer, for that reason I had to have them removed after one month. I have hayfever which would have explained that.

I have had the insides of my eyelids examined by various doctors and they have said there is inflammation but they don't know why. I was on catanorm for a while but it didn't help. Apart from hayfever I do not think I am severely allergic to anything but I would like to get tested for allergies for peace of mind.

Unfortunately it doesn't seem to be available on the NHS, and to get tested privately would cost me £450 here in London which is just too much for me at the moment.

[MGD1701]

Good to ask - if we dont try, we dont get it. If still no luck, ask WHY or try other doctors.
tbut 6 sec does not mean you do not have inflammation nor water issue.

[epicjinx]

It is such a joke that Ikervis as a last resort.
Why most people have to visit many doctors and still suffer? This is the main reason. Doctors do not intervene early enough.

I watched a lecture recently, some opinion leaders in USA discussing some cases.
One case: patient with very red eyes (rosacea), no pain. Osmolarity were 325 or so etc.
These doctors ALL said we need to catch/treat this patient earlier, with Restasis, xiidra etc.

Because of NHS costs thats why. And your need to be considered severe for the treatment hence why last resort. I went to an opthamoligist and no help because i used castor oil and had 6 seconds tbut. No ikervis or scerelas mentioned.

[epicjinx]

@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.

You mention very itchy eyes? I would check for allergies could be possible. They check your eye lids on the inside to see about this. I hope this helps!

[quattroboy]

I had an appointment with my doctor today. She used this device with long string to poke my eyes. I could easily feel the string. She said I don’t have nerve sensation problem.

What device mr walker used?

No fancy devices just the corner of the tissue.

I've seen the string approach on youtube.

[ebi1368]

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.

I had an appointment with my doctor today. She used this device with long string to poke my eyes. I could easily feel the string. She said I don’t have nerve sensation problem.

What device mr walker used?

[quattroboy]

Ikervis is a minimum three months taking six to be fully effective. Even 9 months.

I think it's helping me now. Three months in.

Ikervis only actually helps a small number of people, I've read around 15% of AD based dry eye.

Again NHS view of dry eye is tragic. Just leave people to suffer.

[MGD1701]

I asked for an Ikervis prescription, and was told that it was something they'd only prescribe as a last resort (FFS).

It is such a joke that Ikervis as a last resort.
Why most people have to visit many doctors and still suffer? This is the main reason. Doctors do not intervene early enough.

I watched a lecture recently, some opinion leaders in USA discussing some cases.
One case: patient with very red eyes (rosacea), no pain. Osmolarity were 325 or so etc.
These doctors ALL said we need to catch/treat this patient earlier, with Restasis, xiidra etc.

[MGD1701]

Finally managed it..
Had a followup NHS appointment at the eye hospital today, with all the usual pointlessness that entails (no tests except to look at staining. Said I couldn't have aqueous deficiency because I'm young and male etc).

I asked for an Ikervis prescription, and was told that it was something they'd only prescribe as a last resort (FFS). Strongly argued my case and he did then agree to write one. Probably just to get rid of me.

Great that you got it - it is really sad that we have to flight for it in such way.
Doctors statement only shows they know nothing about dry eye - can we trust them?

[Meibum Ian]

About 3 months in maybe, but I also started fingerprick blood drops and then PRP drops..

[Alix]

@Meibum Ian Well done! That is exactly what I did when I got my punctal plugs inserted! (Unfortunately they didn't work for me, but anyway.....).
How long did it take for you to see improvement from using Ikervis?

[Meibum Ian]

Finally managed it..

Been on an Ikervis private prescription since June, and been trying to get it on the NHS since. Lots of problems getting GP and private consultant to agree / understand each other's perspective etc.

Had a followup NHS appointment at the eye hospital today, with all the usual pointlessness that entails (no tests except to look at staining. Said I couldn't have aqueous deficiency because I'm young and male etc).

I asked for an Ikervis prescription, and was told that it was something they'd only prescribe as a last resort (FFS). Strongly argued my case and he did then agree to write one. Probably just to get rid of me.

Result!

[Meibum Ian]

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.

Have you seriously considered PRP drops from vissum in Alicante? Far cheaper than NHS, and likely superior. The PRP is more concentrated in growth factors and undiluted by saline