Advice on using Ikervis

[Alix]

I have been using Ikervis for 3 weeks now to treat evaporative dry eye/chronic inflammation. The last doctor I saw said I also now have aqueous deficiency. At first I was able to put up with the stinging upon application, as I thought no pain no gain, but I am finding it harder and harder to tolerate the burning. When I put the first drop in, its fine, nothing happens, but then after I apply the rest of the vial, the burning starts, and it's so bad that I can't even close my eyes to go to sleep. I lie in my bed with my eyes open for at least 20 mins.

As I am paying for this privately, it is a huge expense and I am now wondering whether it's worth carrying on given I haven't seen any improvement and the nightly dread of putting the drops in.I have one week's worth of drops left, I need to decide soon whether to buy next month's.

Does the burning ease over time? If I stop Ikervis, the only alternative I have left is PRP drops but that means going to Spain to get them. I've already tried everything else and nothing has worked (IPL, doxyclycline, azyter, steroid drops, artificial tears, plugs).

[Meibum Ian]

If you aren't already, keep the vials in the fridge. Makes quite a big difference for me.

Surprised that you can't close your eyes with it. I find the pain (when I have it - I don't always) worse with eye open. If I put the drops in as the very last thing before sleep I'm usually ok.

Tolerance to the drops can improve after a while, yes

[Meibum Ian]

When I put the first drop in, its fine, nothing happens, but then after I apply the rest of the vial, the burning starts, and it's so bad that I can't even close my eyes to go to sleep.

Just re-read this. Am I right in thinking you're putting an entire vial's worth in? Should just be one drop in each eye and then discard the rest.

[Alix]

I wasn't aware that I was supposed to keep them in the fridge, I will do that now.

When I put the first drop in and close my eyes, there is no reaction, the problems start when I reopen my eyes to put the rest of the drops in, the burning is so bad my eyes water profusely.
Because of this I fear most of the Ikervis is being washed away. It is very painful when I try to close my eyes - I feel like my eyeballs are on fire and I jolt when my eyelids close over them.

[Alix]

Just re-read this. Am I right in thinking you're putting an entire vial's worth in? Should just be one drop in each eye and then discard the rest.

Really? Isn't it a waste to throw the rest away? I thought you were supposed to use the whole vial up?

[Meibum Ian]

Really? Isn't it a waste to throw the rest away? I thought you were supposed to use the whole vial up?

Yes (check the patient information leaflet).

Isn't it a waste to throw the rest away?

I think it's probably more of a waste putting it all in your eye and having a reaction of extreme pain!

[Alix]

Yes (check the patient information leaflet).



I think it's probably more of a waste putting it all in your eye and having a reaction of extreme pain!

Thank you I guess the moral of the story is, read and follow the instructions....

Yes it does say discard the rest, but I just thought it was a waste not to use it all, especially as it is so expensive.

I am keen not to give up so soon especially as I now have now developed aqueous deficiency, and there is nothing left that can help me except PRP.

[Meibum Ian]

I wasn't aware that I was supposed to keep them in the fridge, I will do that now.

It's not that you are supposed to. Just I and others seem to find it more comfortable going in the eye when cold. The instructions do say not to freeze, though.

As there is so little liquid in the vial they do warm up quickly, so put them in soon after taking out of the fridge.

there is nothing left that can help me except PRP

Maybe amend that to "nothing that I currently know of". I do not think PRP would be the last resort, by any means.

[MGD1701]

Hi Alix
perhaps try to get Ikervis prescription from the doctor who identified your water issue - very good reason - so you can save money.

Maybe focus on one thing first, instead of worring too much and too early.

[Alix]

@Meibum Ian Thank you! I am so glad I asked, clearly this is a case of less is more! I put in one drop as per instructions and closed my eyes. The stinging kicked in shortly afterwards but it wasn't nearly as bad as before and there was less watering, so hopefully more of the Ikervis would have stayed on my eyes.

@MGD1701 I have got a private prescription from a private doctor, so I have to pay full price for the Ikervis. I have already tried numerous times to get an NHS prescription from the eye hospital but the ophthalmologists there say my condition is not "serious", and that Ikervis is only for those with cracked corneas and schirmers score of zero or close to it. Anyway I gave up with them a long time ago, clearly they are under orders to only give it out in extreme cases due to the expense.

There is a glimmer of hope though - the private doctor has said that if the Ikervis works, he will write to my GP, who would be able to write an NHS prescription for me, although there is a very high posssibility that they would refuse. Apparently most GPs do not understand dry eye and are not familiar with Ikervis, so are uncomfortable giving out such expensive medication. Let's see.....

[MGD1701]

Dont understand HNS's logic as the staining is a late stage indicator,
when glands loss, would they come back? NO, so early intervention is the key.

Why they dont care? WE pay the price anyway NOT them nor doctors
for expensive treatments/drops etc, become housebound, not able to work etc

Maybe show your 10th doctors your gland images - and ask if you are serious enough?
Of course, YES, when one only has 4-5 glands left, despite you have visited 10 doctors.

[Guest]

Alix When I had a lot of irritation from another medicated drop I used, the following 3 things were a big help to reduce the stinging and irritation from it... maybe they'll help you too:

1. Use a drop of artificial tears 15-minutes prior to the medicated drop.
2. Don't read, use the computer, expose your eyes to wind or anything else that could irritate them in the time leading up to the medicated drop.

Those 2 tricks made my eyes feel better in the time leading up to the medicated drop, and it seemed that if my eyes felt half decent before using the medicated drop, the medicated drop itself caused WAY less burning/irritation.

3. As MGD1701 said, put whatever vial of medicated drop you're going to use next in the fridge. Putting cold drops in feels better and causes less burning/stinging. This isn't something one is "supposed" to do - i.e. there's nothing wrong with keeping the drops at room temperature - however, the cool temp of the drops will likely feel more soothing and less irritating.

Eventually, as your eyes improves, the above 3 strategies may no longer be necessary. Good luck!

[Alix]

Alix When I had a lot of irritation from another medicated drop I used, the following 3 things were a big help to reduce the stinging and irritation from it... maybe they'll help you too:

1. Use a drop of artificial tears 15-minutes prior to the medicated drop.
2. Don't read, use the computer, expose your eyes to wind or anything else that could irritate them in the time leading up to the medicated drop.

Those 2 tricks made my eyes feel better in the time leading up to the medicated drop, and it seemed that if my eyes felt half decent before using the medicated drop, the medicated drop itself caused WAY less burning/irritation.

3. As MGD1701 said, put whatever vial of medicated drop you're going to use next in the fridge. Putting cold drops in feels better and causes less burning/stinging. This isn't something one is "supposed" to do - i.e. there's nothing wrong with keeping the drops at room temperature - however, the cool temp of the drops will likely feel more soothing and less irritating.

Eventually, as your eyes improves, the above 3 strategies may no longer be necessary. Good luck!

Thank you for your advice!
So far I am applying the Ikervis neat, but if things get worse I will think about applying artificial tears in beforehand.
Thankfully since keeping the vials in the fridge and putting just one drop in seems to be making the stinging sensation less worse.

[Rebecca Petris]

Buffering with a drop 10-15 minutes earlier is great advice, makes a noticeable difference for most people unless actually allergic