Retinopathy and terrified

[petdell]

Thanks for all your replies. I think my consultant actually wants to use the newer drug (Eylea?), for me, I couldn't remember the name but knew it was like Lucentis. I didn't realise that you needed to have the injections so often though, and am I right in thinking indefinitely?

There's no real answers to that because it varies patient to patient. You may find you have loading dose of three jabs they work fluid doesn't build quickly and you go a year. Keep your fingers crossed. There are on going trials on eye masks you wear overnight. Which in theory give your eyes light through the night giving oxygen and preventing new veins developing. This sounds exciting. Try googling Nocturnal 400 eye masks. It sounds hopeful. Good luck

 

[VixyA86]

There's no real answers to that because it varies patient to patient. You may find you have loading dose of three jabs they work fluid doesn't build quickly and you go a year. Keep your fingers crossed. There are on going trials on eye masks you wear overnight. Which in theory give your eyes light through the night giving oxygen and preventing new veins developing. This sounds exciting. Try googling Nocturnal 400 eye masks. It sounds hopeful. Good luck

Yes my consultant is also going to get me on the trial for that!

 

[RomeMC]

Hi VixyA
I am actually blogging to help my father who doesn't really do technology. He is a T2 with complex medical conditions and dreads his eye appointments. Not sure if it will help, hes a lot older than you! But I recently found this on youtube

and I believe it is for any age with anyone who has retinopathy, having delved a little deeper I am currently trying to get my dad one. Good luck.

 

[chard]

I have retinopathy in my left eye . My first bleed was about 13 months ago when I woke up one day to see what I thought was black lines on the wall!!
I have had many laser sessions over the months and I admit that I was depressed and feared the future, not only my ability to drive but also the ability to do my job. Luckily my company have been very supportive.
I have had 2 major bleeds in the last year that have dispersed and left me with cloudy vision so I chose not to drive until it cleared . my company were unsure whether I should drive for them so I informed the DVLA and after filling in a few forms I had to go to Specsavers and complete the peripheral vision test (looking into a box and focusing on a red light and clicking a button every time a green light appears) I passed the first one and have just completed the 2nd one and im waiting for a decision from DVLA but im hopeful as its only one eye. As ive mentioned I chose not to drive because I didn't feel safe but you do adapt once the cloudiness has gone and you are left with a few persistent black streaks .
I know that everyone who has retinopathy will experience different levels of vision loss and it can take months or even years to clear and you may have a few set backs along the way but its amazing how we do all cope after the initial shock and terror. I put my trust in the medical team and try to look after myself to give me a fighting chance after 40 years of type1
I also got a lot of support and good advice on this forum when it first happened to me (coz it was the end of the world for me at the time!)
Good luck and be positive

 

[sarahleslie]

VixyA86 i have been told the same today :-( and i am exactly the same...type 1 29 yrs old :-(
I am terrified and cant do right for doing wrong :-( being bad leads to bleeds and being good does too.
Having a major meltdown & scared re laser treatment.
They have prescribed me a tablet to start taking, which slows down the.progression & the usual advice to try for
better control (either way!).
All ive done is cry all night

 

[Fayefaye1429]

VixyA86 i have been told the same today :-( and i am exactly the same...type 1 29 yrs old :-(
I am terrified and cant do right for doing wrong :-( being bad leads to bleeds and being good does too.
Having a major meltdown & scared re laser treatment.
They have prescribed me a tablet to start taking, which slows down the.progression & the usual advice to try for
better control (either way!).
All ive done is cry all night

Oh Sarah I am so sorry to hear. It's horrible news to get and with me I got news in a letter gr am here if you would like to talk

 

[Fayefaye1429]

Yes my consultant is also going to get me on the trial for that!

How are things going Vicky?

 

[sarahleslie]

Thanks Fayefaye1429
Im going to cut sugar out all together & well... Im just going to have to deal with it & have it done...im scared of losing my vision

 

[noblehead]

@sarahleslie, can I ask what is the tablet called to help with the retinopathy?

So sorry about your news, but the laser treatment isn't as bad as you think and if it stops the bleeds then it needs to be done, have a look at the website that I posted at the start of the thread as it has a wealth of information on diabetic retinopathy.

 

[Fayefaye1429]

Hi Sarah I know what you mean loosing sight is my biggest fear too. It's unfair with this as even good control can result it's eye issues my nurse said its one of those things. I hate that phrase! Sorry wee rant there. What's the next step for you if you don't mind me asking?

 

[sarahleslie]

Thanks noblehead
The tablet is fenofibrates. Will let you know how i get on with it x

 

[noblehead]

Thanks @sarahleslie

Yes its important to control cholesterol levels when you have diabetic retinopathy as well as bp levels too (not forgetting the obvious bg levels), my cholesterol was fine when I got diagnosed with retinopathy as was my bp which was below the recommended level of 140/80, however both my Ophthalmologist and Dr said it was in my best interests to keep my bp below 130/70 to take the pressure off my eyes so I started on a low dose bp drug called Ramiprill, been on it since then with no side-effects.

Best of luck.......

 

[Fayefaye1429]

Wow didn't know that noblehead

 

[LPP]

Hi - Please don't be frightened! I found myself in a similar situation to you for similar reasons, except I waited for vision changes and a trip to eye casualty! I've had a ridiculous amount of laser, over 30 lucentis injections in total and a vitrectomy (complication from laser where a vessel fibrosed and pulled on my retina causing bleeding) and though none of it was pleasant, my eyesight is 6/6 in both eyes (if I wear glasses but I'm short sighted anyway!) and passed a DVLA field of vision test to drive lorries. If you have any questions or worries, please don't hesitate to ask me. I had monthly injections for a year, then three monthly injections for a year (4 in total per eye that year) and now they've completely settled down.

 

[GeorgieB]

I have today been told that I have proliferative retinopathy and have to go back for laser treatment next Friday. I'll then have to have lucentis injections on top of that. This seems to have developed over the last few months after recently tightening up on my control. I haven't had any significant vision loss yet (touch wood), but I'm absolutely terrified. My consultant said that the laser treatment may affect my peripheral vision - will I notice a big difference? Will I still be able to drive? How well can I expect my eyes to recover after this (provided that I keep my diabetes well controlled)? If anyone has anything to offer I'd be grateful, I am so scared and feel devastated. I'm Type 1, 29 years old.

It will be fine...eyes feel a bit dry...I've had over 500 laser bursts in 1 eye and about 400 in the other...depends on how much they will do...Docs will advise you about driving but if they've seen it fast you should be fine. Good luck...I cheated and went to docs and got a tranquiliser first...sailed through the laser!!

 

[giddy_kipper]

Hi. I was diagnosed with significant maculopathy to both eyes and it was really affecting my central vision although I was always legal to drive. I was told I needed lucentis to both eyes indefinitely, but I'm delighted to report that after just three treatments to both eyes I didn't need to have any treatment when I went in last week. Scans showed great success and the swelling almost gone completely. I know they work differently for each individual and I have been very lucky. The staff seemed surprised, but delighted (as was I) at the effect they had on my eyes. I know this might not be the end of the story, I'm back again in 5 weeks and have been told I might need more in the future but for now I am eternally grateful and would say definitely don't worry about them. I was always back in work the next day. For me the unknown and the thought of the treatment was much worse than the reality and I am so, so grateful for the impact it's had on my eyes.