Dry eyes due to Keratoconus

[Alix]

I had a scleral lens fitting and a topography done for the first time. It turns out I have a mild form of keratoconus.
So while I had been diagnosed (using Lipiview) with MGD due to severe meibomian gland atrophia caused by partial blinking/contact lens use,
another reason, or maybe the real reason I have dry eye is because of the keratoconus - it means that my eyelids are having a hard time spreading lipids over uneven corneas.

My nightmare is never-ending. After one year, my eyes look and feel as bad as ever.

So because of my newly diagnosed condition, I will never be able to wear hard contact lens again, and as I had worn them for many years before this, I had been damaging my eyes without knowing it.

Not sure why I had not had a topography before since I've been to Moorfield's hospital at least 8 times now. Really upset.

It will take a while to get the right scleral lens, but once I do, I am praying they will not be uncomfortable and will stop the burning pain.

[MGD1701]

Hi Alix
Thanks for sharing. Sorry to hear that.
I wonder why all (10?) doctors did not detect such issue earlier due to your constant burning.
I recall I even asked some weeks ago, if doctors checked your cornea.
Maybe staining still can not detect it but topography
Did doctor recommend how to solve this? serum tears perhaps?

[Alix]

Hi Alix
sorry to hear that. I wonder why all doctors did not detect such issue earlier due to your constant burning.
I recall I even asked some weeks ago, if doctors checked your cornea.
Did doctor recommend how to solve this? serum tears perhaps?

The doctors at Moorfields only ever examined my eyes using the standard slit lamp.The keratoconus I have is only detectable using topography as it is a mild form.

Correct diagnosis is so important. Moorfields did not notice the atrophied glands. The private doctor picked up on this via Lipiview but the keratoconus was missed.

Keratoconus can be caused by rubbing - I have a terrible feeling the eyelid massages I have been doing after hot compress has caused irreversible damage to my corneas....

I can't get serum drops in the UK, even if I could I am not sure they will help me. My glands have severely atrophied nothing will bring them back.

All I can do now is manage my condition;-

1) Stop eyelid massage
2) Continue to take Ikervis which might reduce inflammation
3) Use scleral lenses which may stop the burning pain

[edmunder]

Sclerals will help with the burning dramatically. They cover the cornea so that area will feel ok most of the time.

The lenses can cause discomfort with the inner eyelids and the eye is general from dryness and blinking.

[Guest]

I want to write a few things here. You said you’re not sure if serum will help you because of gland loss. Yet, the next thing you said was, all I can do is manage my condition. I agree with the latter, not the former. That said, if you have gland loss and evaporation, serum will help keep the cornea healthy. Serum is literally one of the best things you can put in your eye, I would order a centrifuge online and do it myself if that was the case. But I think you may be able to find a private doc to help you out with the serum. That’s your choice however.

in the United States, it’s thought by many doctors that restasis actually causes more inflammation over time. Again, you need to make that decision for yourself. If it’s helping, keep it up. If not, it may be doing more harm than good.

Kerataconus can often be associated with sleep apnea. I would bring this up only because I was given a similar diagnosis. So I always urge people to consider sleep as a problem especially if they snore or have incomplete blink.

A scleral lens should help slow or stop the progression of the disease. It’s one of the best options for people out there with kerataconus. Should help with pain as well.

Im sorry this is happening. But please don’t shoot yourself in the foot. Don’t assume something won’t work before you try it. Take the doxy if your doc suggests. Try to get serum if you can. Do everything possible because every time you find some comfort, it eventually adds up. Good luck!

[Alix]

Sclerals will help with the burning dramatically. They cover the cornea so that area will feel ok most of the time.

The lenses can cause discomfort with the inner eyelids and the eye is general from dryness and blinking.

How long have you worn sclerals for, and how many hours a day do you wear them?

[Alix]

I want to write a few things here. You said you’re not sure if serum will help you because of gland loss. Yet, the next thing you said was, all I can do is manage my condition. I agree with the latter, not the former. That said, if you have gland loss and evaporation, serum will help keep the cornea healthy. Serum is literally one of the best things you can put in your eye, I would order a centrifuge online and do it myself if that was the case. But I think you may be able to find a private doc to help you out with the serum. That’s your choice however.

I am glad the serum drops are helping you. If they were widely available here in the UK, then I would get them tomorrow. The problem is, there is a lot of red tape involved as you can only get them via the National Blood Bank, and as I don't meet the criteria to get them on the NHS (need to have Srogjens, Lupus etc), I would need to get them privately. Even if I manage to get past the red tape which would take months, it would cost £1000 per month. Even if I could afford this kind of money, I am not prepared on principle to pay for something that will not actually cure my condition, but just provide relief. That said I am willing as a last resort to pop over to Spain to get PRP drops if the Ikervis and scleral lens don't work to ease the burning.

in the United States, it’s thought by many doctors that restasis actually causes more inflammation over time. Again, you need to make that decision for yourself. If it’s helping, keep it up. If not, it may be doing more harm than good.

Yes you are right but at the same time, I need to give Ikervis a good go, it takes 3 months for the effects to kick in apparently. At the moment, it is not having any positive or negative effects. If at the end of the 3 months I am still the same, at least I can say to myself I tried.

Kerataconus can often be associated with sleep apnea. I would bring this up only because I was given a similar diagnosis. So I always urge people to consider sleep as a problem especially if they snore or have incomplete blink.

I will need to look into this.

A scleral lens should help slow or stop the progression of the disease. It’s one of the best options for people out there with kerataconus. Should help with pain as well.

Hope so!!

Im sorry this is happening. But please don’t shoot yourself in the foot. Don’t assume something won’t work before you try it. Take the doxy if your doc suggests. Try to get serum if you can. Do everything possible because every time you find some comfort, it eventually adds up. Good luck!

I am just trying to manage my expectations. The past year has just been an emotional rollercoaster, full of disappointments....getting my hopes up high for an eye drop or treatment I haven't tried yet only for my hopes to be dashed because they don't work. Plus I have spent so much money it is unreal. Thank you for your support it really is much appreciated. I read in your other thread things are beginning to work out for you now, I'm really pleased for you and it gives others hope.

[Guest]

I am glad the serum drops are helping you. If they were widely available here in the UK, then I would get them tomorrow. The problem is, there is a lot of red tape involved as you can only get them via the National Blood Bank, and as I don't meet the criteria to get them on the NHS (need to have Srogjens, Lupus etc), I would need to get them privately. Even if I manage to get past the red tape which would take months, it would cost £1000 per month. Even if I could afford this kind of money, I am not prepared on principle to pay for something that will not actually cure my condition, but just provide relief. That said I am willing as a last resort to pop over to Spain to get PRP drops if the Ikervis and scleral lens don't work to ease the burning.



Yes you are right but at the same time, I need to give Ikervis a good go, it takes 3 months for the effects to kick in apparently. At the moment, it is not having any positive or negative effects. If at the end of the 3 months I am still the same, at least I can say to myself I tried.



I will need to look into this.



Hope so!!



I am just trying to manage my expectations. The past year has just been an emotional rollercoaster, full of disappointments....getting my hopes up high for an eye drop or treatment I haven't tried yet only for my hopes to be dashed because they don't work. Plus I have spent so much money it is unreal. Thank you for your support it really is much appreciated. I read in your other thread things are beginning to work out for you now, I'm really pleased for you and it gives others hope.

I cannot respond to every quote like you did, on my phone all the time.

anyway, I did the same with restasis. I took it 5 months before my doc tong me to stop. So yes, give it an honest shot.

I make my own serum at home, you can do the same.

https://www.amazon.co.uk/Bespick-Cen...KHL&ref=plSrch

cetrifuge costs 140 gbp...once you buy that, the needles, vacutainers, bottles and saline are nothing. I’m just offering it as an option. Takes a hardcore mofo to take their own blood. So I understand it’s kot an option for everyone. But if you’re desperate, well, then you might change your mind.

I understand the emotional roller coaster. I cannot blame you especially in your insane country (only because of the NHS, makes no sense). I’ll just tell you what everyone told me. Try to stay calm, you haven’t tried everything, you may still be able to heal. After what I went through, I finallly believe that. It’s impossible to stay positive in this type of situation. I’m not going to sugar coat it. All I’m going to say is don’t give up. I forget about how much this costs because I have great insurance and I’m just lucky really.

And thank you, I’m happy I’m doing so much better.

[Alix]

I make my own serum at home, you can do the same.

https://www.amazon.co.uk/Bespick-Cen...KHL&ref=plSrch

cetrifuge costs 140 gbp...once you buy that, the needles, vacutainers, bottles and saline are nothing. I’m just offering it as an option. Takes a hardcore mofo to take their own blood. So I understand it’s kot an option for everyone. But if you’re desperate, well, then you might change your mind.

This is a very cool machine. I love the idea of making my own serum drops! Unfortunately I absolutely hate syringes and I cannot look at blood - even seeing one drop turns my stomach so the idea of drawing my own blood is totally unrealistic for me, but others out there less squirmish may be interested. If I get desperate I will go to the Vissum clinic in Spain to get PRP drops.

[Guest]

This is a very cool machine. I love the idea of making my own serum drops! Unfortunately I absolutely hate syringes and I cannot look at blood - even seeing one drop turns my stomach so the idea of drawing my own blood is totally unrealistic for me, but others out there less squirmish may be interested. If I get desperate I will go to the Vissum clinic in Spain to get PRP drops.

I hope you find some relief!