Retinopathy/ macular oedema

[Flove14]

Hi
I was diagnosed with retinopathy a while back, I've seen 2 different doctors who 'kept an eye on it' when I was seen approx 6 weeks ago I was advised further change would require treatment. At my appointment on Monday the consultant advised I would need treatment urgently. My right eye was injected with Eyelea and I'm going back this week to have the left eye done. Then I'm in for laser too!
Just wondering if anyone else has been through this or similar? I'm 24 and the thought of potentially going blind is petrifying!

 

[Fayefaye1429]

Hi Flove I'm sorry to hear what's happening. I am just turned 30 and was told last year that my right eye has issues. Im in the stage of monitoring and no treatment currently but the thought of going blind is so scary especially as we are both young. Do you feel your d is ok?

 

[Flove14]

I feel everything has been left until it's reached crisis stage. The doctor I saw on Monday has been the best one yet!
I'll admit when I was in my teens I let my diabetes slip (typical teenage attitude) and I had no issues at all then, now my diabetes is better this happens, but of a kick in the teeth

 

[Fayefaye1429]

Also there are a lot of people on here who have experienced this who maybe able to ease you

 

[Fayefaye1429]

I was the same in my teens for lots of reasons.i also echo what your saying they do leave it to crisis point fobbing you off with more appointments that result to nothing. What ideally would you like them to do to help?

 

[Flove14]

I've saw a few people on here with a similar story, which is worrying. Is it across the board that people are being left until the situation reaches crisis point?
I know they are now helping/doing treatment to preserve my sight (there has been no changes to my sight just the working behind, which is scary) but why not do something when greater changes showed?

 

[Fayefaye1429]

I agree with you. Mine is the behind the scene job in my eyes too. I get told money for treatment is only given when the patient is in serve circumstances to justify budget.
I can't say if it's across the board. You may have seen in one of my posts about my experience lately of doctors re eyes. If it helps I got told that I am not sick enough to justify funding.
How many of us I wonder experience this for all sorts of things?

 

[Flove14]

So people's eyesight is left to deteriorate as a result? Shocking. I looked up Eyelea injections which are also used for macular degeneration cost around £1,000 approx. Usually treatment continues with one injection per month etc, imagine the cost of that for 2 eyes...find myself lucky to be getting it!
I think even with regular diabetes care we are forgotten about at times.

 

[himtoo]

Hi there @Flove14
welcome to the forum

check out my topic on eyes here http://www.diabetes.co.uk/forum/threads/noctura-sleep-mask-for-diabetic-retinopathy.75538/

i have been using this mask for just over 1 year now and it is showing good results.
I am Type 1 for 43 years.

PM me if you want further info or want to talk about eyes --

all the best
paul ( himtoo)

 

[Fayefaye1429]

I agree it's shocking!! Sometimes I wish we did the insurance route. I'm not saying the nhs is bad but I think if you can afford something your at their wim at least insurance wise more things are accessible. I know a diabetic girl in America who has quite a few things we struggle to get. I know it's the old argument of paying verse free. I guess I hate the power of it all. End of rant there sorry.
The treatment I'm trying to get will save the nhs over 5,000 a year with me even when pointed out it's hard to get heard. I am quite shocked with the whole eye thing I got a letter through the post saying unfortunately your diabetes has entered both your eyes but no treatment at the moment and see you in a year. I was so up and lost it was only when my gp surgery rang and told me it was one eye and explained where I was that u got it. I personally found that disgraceful service

 

[Fayefaye1429]

If you ever want to talk f love message me I'm happy to listen

 

[Flove14]

I've wondered if private healthcare would be a better option?
Communication is also a key factor here, do the various departments involved in our care speak to each other? My guess is no.
I was going yearly, until changes occurred then it was 6 months, the time gets lesser and lesser then bang you are faced with laser and injections on what you thought was a routine trip!

 

[sssjay22]

Hi, I am a new member as I felt compelled to sign up when i read your post.
I am currently 25, but at 21 I was also diagnosed with both proliferative retinopathy and macular odema in both eyes. I too had major blips in my teenage years and had horrendous control (mainly intentionally due to diabulimia tendencies etc.).I undertook the DAFNE programme and my control improved dramatically, which is what sadly sped up my eye issues apparently...! I had a few symptoms, but could still see vaguely okay so was so shocked when I was diagnosed! My diagnosis was also pitifully slow, cancelled retinal photography appointments and very delayed general eye appointments definitely didn't help.
The doctors said I needed urgent laser and that it may not cure the problem... I was so upset and thought my life was over.
Luckily, the laser worked...I did have quite a lot but it worked. I suffered some vision problems for a few more months after the laser, but it went away completely in time. Every doctors who looks at my eyes now always tells me that it's one of the best lasers they have ever seen so i couldn't be more thankful!
In the last 4 years my eyes have been stable, and more recently (due to a sort of realisation that i'm only 25 and never want to go through eye problems again) I have made sure my control has been much better (now at 58, the lowest I have ever had!).

All i can say to you is please don't worry so much and let the treatment take effect, there is literally no reason why it won't work. The hardest part is making sure your diabetes is controlled for ever more, although we are all struggling with that one...!

Hope everything works out ok!

 

[Flove14]

I've been been trawling the Internet since I had my first injection on Thursday and can't find anything about Eylea. Although the nurses have told me if I got through an injection to the eye (not as bad as it sounds) laser is a stroll in the park! I'm not so sure!
Thanks for posting, refreshing to know I'm not the only one in their 20's experiencing this!

 

[Fayefaye1429]

Hi sssjay and welcome. Your story is very inspiring and it's a great message of hope.

 

[Fayefaye1429]

I guess eyes hold a lot of power in them and it's can feel scary when they become fragile. I guess it may even just come down to the anger of treatment so far delievered in Flove and my case

 

[Neemo]

I've been been trawling the Internet since I had my first injection on Thursday and can't find anything about Eylea. Although the nurses have told me if I got through an injection to the eye (not as bad as it sounds) laser is a stroll in the park! I'm not so sure!
Thanks for posting, refreshing to know I'm not the only one in their 20's experiencing this!

Hi @Flove14,

Sorry to hear about your situation.

Just had a quick look to see what eylea is; there is lots of information around - what specifically are you looking for.

 

[Dark Horse]

Every treatment carries risks. Ophthalmologists are bound by the Hippocratic oath, " first do no harm". When macula oedema first starts, the ophthalmologist has to balance the risk of treatment against the risks of not treating. With good glucose and blood pressure control macular oedema can improve and treatment may not be necessary. Scheduling shorter times between appointments allows treatment to be started as soon as it is necessary but not before.

There is some good information about Eylea here:
https://www.google.co.uk/url?sa=t&s...e7MjtG6IQF-G-HwiQ&sig2=WAA8vfhdyTsp9S-7f9LEtA

 

[yardman]

I've been been trawling the Internet since I had my first injection on Thursday and can't find anything about Eylea. Although the nurses have told me if I got through an injection to the eye (not as bad as it sounds) laser is a stroll in the park! I'm not so sure!
Thanks for posting, refreshing to know I'm not the only one in their 20's experiencing this!

Hi Flova
Eyelea is an old treatment now.I had very severe macular oedema and my vision got really bad.My vision deteriorated even more and it was discovered I had cysts on my retina.I am under Moorfields and in August of this year I had an Iluvian implant.This has just become available on the NHS, but each one costs around £20000, so they are not given out yo everyone, but the results are staggering.I now have 6/6 vision.I can not only read the bottom line on an eye chart.I could read the tiny writing on the chart that said who it was printed by.This treatment is available.Ask if you can have it.And if the answer is no, make sure they tell you why.As I said, the results are staggering.Good luck.Get back to me if you need more details

 

[petdell]

Eyelea is actually a new drug for treatment of retinopathy in diabetes and has only been approved for use by n.I. c.e in the last 3 months. I have just started with eyelea after 4 years of jnjections of lucentis. If they catch early signs of retinopathy or oedema, the chances are good that a loading dose will do the job. Good luck