Hi all, I’m new here 🙂 I’m Canadian and T1. I have proliferative diabetic retinopathy and was on anti-vegf eye injections in Canada. I’ve been getting bleeds since February and it’s causing issues with my work but I have seen 3 consultants at the eye hospital and basically they said they can’t do anything as the only injection that is licensed in UK is too expensive and not licensed for use of proliferative retinopathy. They could do laser but then the DVLA will ask for field vision test and if I fail they will pull my license so dr said no more laser. They can do surgery but it’s temporary. Basically they told me to go away there’s nothing they can do. I’m looking at going to Europe for treatment, has anyone experienced this? Any tips or advice of who/where/how to get help? I’m so frustrated. Thanks in advance xx
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Injections for Proliferative Retinopathy
- Thread starter ErinM
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ColinUK
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- Type 2
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@ErinM Try calling the DUK helpline as they may at least be able to confirm whether or not the treatment is available in the U.K. and your consultant has got things wrong.
I’m wondering who the top ophthalmic surgeon is for this and if you could ask for a referral to them perhaps?
I’m London-centric so tend to automatically regard Moorfields as the best eye hospital in the land but no idea of that’s the case for your needs.
Sorry I can’t be more helpful but hopefully someone with more relevant experience will come along in a bit.
I’m wondering who the top ophthalmic surgeon is for this and if you could ask for a referral to them perhaps?
I’m London-centric so tend to automatically regard Moorfields as the best eye hospital in the land but no idea of that’s the case for your needs.
Sorry I can’t be more helpful but hopefully someone with more relevant experience will come along in a bit.
Flower
Well-Known Member
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- Type 1
Hi and welcome @ErinM 🙂
I'm sorry you're dealing with proliferative retinopathy and are having issues trying to access a treatment you've had before in Canada.
Anti vegf injections are used in the NHS, a few forum members have had them for maculopathy. The main injections available in the NHS are Lucentis, Avastin and Eylea- this is assuming you are eligible for NHS treatment.
This page is from Diabetes uk and covers the use of eye injections as a treatment option, scroll down the page to find it.
www.diabetes.org.uk
Perhaps the use of injections is not appropriate at present? Anti VEGF injections weren't around in the 1980's/90's when I was dealing with proliferative retinopathy so I don't know what reasons there could be to wait and watch or use laser. It seems the injections are used more /only for maculopathy , could that be the reason?
I hope you can get the answers you need and that whatever treatment you have helps to stabilise and settle your sight. As above give the Diabetes UK helpline a ring or speak to your GP about it and if there is a larger eye hospital near to you request a referral. Best Wishes.
I'm sorry you're dealing with proliferative retinopathy and are having issues trying to access a treatment you've had before in Canada.
Anti vegf injections are used in the NHS, a few forum members have had them for maculopathy. The main injections available in the NHS are Lucentis, Avastin and Eylea- this is assuming you are eligible for NHS treatment.
This page is from Diabetes uk and covers the use of eye injections as a treatment option, scroll down the page to find it.
Managing eye problems when you have diabetes
You can prevent your eye disease getting worse – but you need to act now. Diabetic eye screening is so important because you may not realise you have a problem with your eyes, and if a problem with your eyes is picked up early, taking the right steps can stop it getting worse.
Perhaps the use of injections is not appropriate at present? Anti VEGF injections weren't around in the 1980's/90's when I was dealing with proliferative retinopathy so I don't know what reasons there could be to wait and watch or use laser. It seems the injections are used more /only for maculopathy , could that be the reason?
I hope you can get the answers you need and that whatever treatment you have helps to stabilise and settle your sight. As above give the Diabetes UK helpline a ring or speak to your GP about it and if there is a larger eye hospital near to you request a referral. Best Wishes.
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@Flower and @ErinM
Sorry to jump on this post but I'm desperate for some insights
@Flower i saw from your reply you have PDR can you share what treatment you had and what your. Vision is like ? Did you maintain peripheral and central vision?
@ErinM Did you get your treatment sorted in the UK? Eylea is given here so hopefully that has helped is your diagnosis PDR?
I.have had quite the journey
I'm T1D coming up to 28 years thankfully prior to now no complications
However October 2022 noticed floater and wiggly lines ... all usual background eye screening didn't reveal anything of concern however florescin angiography shows extensive proliferative retinopathy both eyes
I'm due PRP laser next week both eyes
I'm terrified as very worried about peripheral vision ams ability to drive given i need a lot of laser both eyes worried about long term impact of PDR ie will I lose my sight ???
@Flower Super keen to see how you have got on
Also about 6 retinal specialists have looked at my angiogram photos and all are puzzled they say that diabetic retinopathy always shows in central area whereas mine is at the far far periphery outer edge of my eyes with ischeamia
Has anyone else had bizarre atypical presentation of PDR???
Thank.you
Sorry to jump on this post but I'm desperate for some insights
@Flower i saw from your reply you have PDR can you share what treatment you had and what your. Vision is like ? Did you maintain peripheral and central vision?
@ErinM Did you get your treatment sorted in the UK? Eylea is given here so hopefully that has helped is your diagnosis PDR?
I.have had quite the journey
I'm T1D coming up to 28 years thankfully prior to now no complications
However October 2022 noticed floater and wiggly lines ... all usual background eye screening didn't reveal anything of concern however florescin angiography shows extensive proliferative retinopathy both eyes
I'm due PRP laser next week both eyes
I'm terrified as very worried about peripheral vision ams ability to drive given i need a lot of laser both eyes worried about long term impact of PDR ie will I lose my sight ???
@Flower Super keen to see how you have got on
Also about 6 retinal specialists have looked at my angiogram photos and all are puzzled they say that diabetic retinopathy always shows in central area whereas mine is at the far far periphery outer edge of my eyes with ischeamia
Has anyone else had bizarre atypical presentation of PDR???
Thank.you
Flower
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi @sugary123
I’m sorry you’re dealing with proliferative retinopathy, it is frightening but there is so much that can be done to protect your vision and give you the best chances of a good outcome.
The laser sessions are spread out so that your retinas can recover and inflammation from the laser burns can settle. There’s a maximum number of laser burns that can be applied at any one session so you’ll probably need to return a few times until the areas of fragile abnormal new vessels are contained and sealed off.
It took a few laser sessions until I noticed any changes in my peripheral vision, it wasn’t immediately obvious but gradually I noticed patches of my peripheral sight missing and noticed my night vision and low light vision became poor. It will depend on how much you need. It doesn’t mean you will automatically lose your driving licence, you do need to inform the DVLA if you have laser in both eyes.
My situation was at a different time in the 1980s early 1990s pre annual retinal screening. By the time I was diagnosed my sight was badly affected and my retinopathy was out running the speed of treatment. There weren't anti VEGF injections available as a treatment back then. Since they’ve become available they’ve proved a successful treatment in protecting as much functioning retina as possible .
The eye clinic will do everything to help you to protect your vision, it is a very frightening complication but there is so much that can be done. The thought of laser is so much worse in your head than in reality, it takes time to get through the sessions and wait for things to settle. Do everything you can with all the usual diabetes related stuff we have to juggle, glucose, blood pressure, etc
Deal with it chunk by chunk and hopefully things will settle down and start to improve for you. Please don’t despair, there’s good treatment out there and every hope. Wishing you well.
I’m sorry you’re dealing with proliferative retinopathy, it is frightening but there is so much that can be done to protect your vision and give you the best chances of a good outcome.
The laser sessions are spread out so that your retinas can recover and inflammation from the laser burns can settle. There’s a maximum number of laser burns that can be applied at any one session so you’ll probably need to return a few times until the areas of fragile abnormal new vessels are contained and sealed off.
It took a few laser sessions until I noticed any changes in my peripheral vision, it wasn’t immediately obvious but gradually I noticed patches of my peripheral sight missing and noticed my night vision and low light vision became poor. It will depend on how much you need. It doesn’t mean you will automatically lose your driving licence, you do need to inform the DVLA if you have laser in both eyes.
My situation was at a different time in the 1980s early 1990s pre annual retinal screening. By the time I was diagnosed my sight was badly affected and my retinopathy was out running the speed of treatment. There weren't anti VEGF injections available as a treatment back then. Since they’ve become available they’ve proved a successful treatment in protecting as much functioning retina as possible .
The eye clinic will do everything to help you to protect your vision, it is a very frightening complication but there is so much that can be done. The thought of laser is so much worse in your head than in reality, it takes time to get through the sessions and wait for things to settle. Do everything you can with all the usual diabetes related stuff we have to juggle, glucose, blood pressure, etc
Deal with it chunk by chunk and hopefully things will settle down and start to improve for you. Please don’t despair, there’s good treatment out there and every hope. Wishing you well.
Thanks for the detailed response @Flower
I'm panicking so much I'm 47 and maim provider tor family and want to and need to continue working and having the ability to drive
I do need a lot of laser apparently
Are you still driving ?
The other issue is they are not sure it is indeed retinopathy as they say its never seen presented this way mu central eye is clear but some way far back of the eye have extensive damage and ischemia
Has anyone here had atypical presentation ?
Also is there any other condition that can cause strange issues with eyes
At the moment ... I have a bleed in one eye so it'd a mess not sure they will even laser that one
So will probably be the left this week and the right once bleeding clears up
I'm panicking so much I'm 47 and maim provider tor family and want to and need to continue working and having the ability to drive
I do need a lot of laser apparently
Are you still driving ?
The other issue is they are not sure it is indeed retinopathy as they say its never seen presented this way mu central eye is clear but some way far back of the eye have extensive damage and ischemia
Has anyone here had atypical presentation ?
Also is there any other condition that can cause strange issues with eyes
At the moment ... I have a bleed in one eye so it'd a mess not sure they will even laser that one
So will probably be the left this week and the right once bleeding clears up
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