Hi everyone,
I’m new to the forum but so far have found a lot of the posts very helpful.
I’ve been diagnosed with proliferative retinopathy in both eyes which has caused a vitreous haemorrhage in the right eye. Frustratingly this has been caused by a sudden improvement in my health and control in the last 6 months.... I have lost 2 stone, been exercising more and saw a massive reduction in my insulin requirements (I’m type 1 since age 4, now age 31). My last retinal screening 12 months ago showed background changes only.
I was concerned about the risks to my vision long term with laser and so have seen an ophthalmologist privately. I am going to be having anti-VEGF (eyelea) injections and wondered if anyone had any experience of this? What’s it like to have the injection done, how quickly did it take effect, did it improve vitreous haemorrhage etc.
I’ve also looked into the Noctura mask and am thinking about giving that a go. Again does anyone have any experience here?
Many thanks for reading and for any info you can provide! Currently very scared and feeling extremely gutted that my efforts to improve my health have actually ended up damaging my sight....
Thank you so much for taking the time to respond. How are your eyes now? Have you had any further problems?Hi
Sorry to hear about your eye problems. I had 2 Avastin eye injections 12 years ago in one eye as well as lots of laser in both eyes. The first injection seemed to work well and dried up the edema but within 6 months it was back. And the second injection didn’t work.
However, I must stress that my control wasn’t good. I was always hypo. The reason I had problems was that I too had got my hba1c down massively in a very short space of time suffering constant hypos.
I think if you are already with good control now then the injections will have a very good chance of clearing up the edema. Also I had my edema for a while as it took me almost a year to pluck up the courage to do it. And many attempts to have the injection done which didn’t work out ...
Unfortunately I drove the doctors mad with my fear of needles. I am and always have been needle phobic... so you can imagine I was never happy with a type one diagnosis
Anyway I also hate anything to do with eyes, the drops, and all that sort of thing...
I’ve come a long way from the days when I’d run from the hospital from the blood testing nurses or eye doctors trying unsuccessfully to put drops into my eyes. I try to zen out now...
So if I managed to do it twice then I’m sure you’ll be fine. I really was a nightmare of a patient. The senior citizens were in and out like they were buying sweets, taking it all in their stride and I was in tears as if it was the end of the world... but it wasn’t, it is over in a second. The prep was longer than the actual injection.
Hope this helps
Pippa, if I recall correctly, our friend @himtoo used a mask during treatment for some eye issues, but I don't recall much detail. Hopefully he'll pop in and respond.Thank you so much for taking the time to respond. How are your eyes now? Have you had any further problems?
Thanks for the words of encouragement my injections are tomorrow. Like you say I’m just gonna try and chill and pretend I’m somewhere else!
I’m struggling with hypos too at the mo, I had no idea that they could damage your eyes so I hadn’t been to worried about it. How did you get on top of yours? I currently inject but think it’s probably time to get a pump.
I'll also tag @Jaylee I know he has had some eye injections [shudder ], but I don't recall any mask.Fantastic thank you!
Thank you so much for taking the time to respond. How are your eyes now? Have you had any further problems?
Thanks for the words of encouragement my injections are tomorrow. Like you say I’m just gonna try and chill and pretend I’m somewhere else!
I’m struggling with hypos too at the mo, I had no idea that they could damage your eyes so I hadn’t been to worried about it. How did you get on top of yours? I currently inject but think it’s probably time to get a pump.
Hi there, thank you so much for taking the time to reply. I’m sorry for the delay in getting back to you- I had my injections yesterday!Hi there @Pippa1988
ok .. so i have used the noctura mask in the past for about 2 years and there was a definite improvement in retinopathy ( some small bleeds actually healed up ) personally i can recommend it but it is quite expensive
as for the macular odema -- i had injections of Lucentis into my left eye about 6 years ago and since then my left eye has been stable and the odema shrunk a bit ( according to the opthalmologist )
as @gemma_T1 has said , there were loads of seniors acting like they were just stopping in to pick up a bag of sweets , but like gemma i was scared of the whole thing .... the build up is the worst bit and the actual injection is about 2-3 seconds ---- I did experience quite unpleasant after effect once the anaesthetic had worn off -- it was sort of like somebody had poured a bucket of sand into my eye--- i learned after the first injection to take paracetamol about an hour before the injection so that helped a bit in that on my subsequent injections i could take further paracetamol about 3 hours after the injection and this lessened the pain in the eye
in all honesty i proceeded straight to bed after each injection and tried to just rest and sleep it off which seemed to work for me.
for a couple weeks following the injections i would get black "floaters" moving across my eyesight but i was told they were normal.
not sure how badly your actual vision is currently affected . this treatment has not improved my actual seeing ( i wear glasses for distance ) but the improvement at the back of the eyes is what this treatment is all about
and finally ...all the best to you .. you are a true t1d warrior and i'm sending all my positive vibes for you
Edited by Mod
Hi Gemma, thanks for the response! I had my injections yesterday, luckily didn’t require any sedation, just tried to zone out and stay calm. They all kept saying I was very brave so I must have done all right!Hi again,
I was told that it is the constant swings of high and low but especially the hypos that do it. I was also told that reducing your hba1c too rapidly will damage your eyes too... very delicate creatures these eyes
Mine has been stable for years. In that they are badly damaged and they say there’s not much they can do ... they are full of laser too.
My good eye doesn’t have any edema, that cleared up in its own when I was stable with the glucose levels.
The only solution really is to stay on top of your blood sugars and do regular exercise, it doesn’t have to be anything wild as long as it’s consistent and doesn’t send you low or too high ... hard to do but much more achievable with a pump. As the exercise helps the blood flow. See if you can get a pump... having eye problems should be one of the criteria as well as too many hypos and dawn phenomenon. This is why I was put on a pump. And it really does change your life.
Also as many on here say, going lower carb helps even out the swings. It makes it easier to work out insulin doses. I’m not saying you have to reduce it as much as some, my own level is low enough to work for me at the moment, but many go much much lower.
Also I found out recently that alcohol damages your eyes ... so another excuse to cut down or cut out drinking... I never knew that before, unfortunately I can’t remember where I read it.
Don’t worry though just pretend it’s happening to someone else and you’re not inside your body. For us it’s a major thing but the doctors do it all the time , it’s routine for them so put your faith in their expertise and float away somewhere niceyou could also ask for a Valium 20 minutes or so before you go in to calm your nerves... I didn’t need to ask, they gave it to me
Wishing you lots of luck!!!!
Thanks for the response! I had the injections yesterday and whilst it was pretty unpleasant I coped and think I will manage to do it again. I think the fear of continued problems with my sight just made me toughen up and get on with it.Hi @Pippa1988 ,
Sorry I'm late on parade, just seen the tag in.
I've had aIt-VEGF jabs for Macula odema. Lucentis & eylea.
The treatment is successful, coupled with reasonable diabetes management. But I still go back for regular scans.
The prep is a bit of a faff, but the injection is over in no time. Personally, I've had no issues after the anesthetic drops wear off.
I was given eye drops to use 3x for 3 days as an "aftercare" from the procedure.
The staff at my eye unit are proffessional, empathic & compassionate.
I basically follow the HCP instructions, treat it like a tattoo sitting (lying down.) & focus on an imaginary glass pyramid.
Hope this helps.
Thanks for the response! I had the injections yesterday and whilst it was pretty unpleasant I coped and think I will manage to do it again. I think the fear of continued problems with my sight just made me toughen up and get on with it.
How many did you have overall? I have to go back in 4 weeks then he will decide if I need more at that point.
Hi Gemma, thanks for the response! I had my injections yesterday, luckily didn’t require any sedation, just tried to zone out and stay calm. They all kept saying I was very brave so I must have done all right!
Yes before this happened I was exercising 3 times a week and loved it. I had also lost loads of weight which I’m trying hard not to put back on whilst I’m not in the gym. From next week I’m going to start going for a gentle swim, I’ve been told not to go on the treadmill, lift weights or do my yoga at the moment which is annoying.
That’s interesting about the alcohol. I decided last week that I was going to give it up anyway apart from a glass or 2 on a special occasion as it just sends my sugars haywire and it’s really not worth it! Good to know that’ll help my eyes too. I’ve also been low carb for the last 6 months or so whilst losing weight and this has led to a lot of my hypos so think a pump is for the best. Which pump do you have? X
Thank you! I’m going to clinic on weds so going to ask about having a pump. Thanks so much for your words of reassurance and encouragement- I’ve never really been on forums like this before. I think being diabetic for as long as I can remember it was never really a big deal to me, however since this has happened the advice from everybody here has been amazing and really helped me to feel better about everything. It helps so much to hear from people who understand and have been through it! XxWell done for being so brave!
If they said so, you most definitely were!!!!
So glad you’ve got it out of the way... and you can start the process of healing your eyes.
I found swimming was brilliant for mine. They really improved in both the OCT test and the fluorangiografia test. So go for it!!!
Yes, easy with the exercise, don’t bring your heart rate up too much for a while, I think they say yoga in case you start standing on your head and doing the asanas entailing moving your head up and down too much.
But don’t worry you’ll be back to yoga soon... just keep to the Savasana pose for the time being ... it will do you good in any case.
After Xmas I took a challenge to go without alcohol until Easter and so I started to read lots of stuff to keep me motivated, it helped that I was ill for most of December and January
Anyway, I read lots of stuff about the damaging effects of alcohol on practically every organ of our body, even if we are not chronic alcoholics, it causes inflammation amongst many other things. I have to say knowing this has made it much easier not to fall into the temptations of celebrating birthdays, aperitivo times and more generally the glass of wine with dinner...
it’s quite an eye opener when you start to discover what it can do to you... although don’t get me wrong I’m looking forward to my glass of wine with Easter Sunday lunch and I won’t be going dry forever, but I’m much more conscious of its effects on my body and especially on my diabetes control, so I think I’ll always put the question is it worth it to myself.
As for the pump I’ve always used Medtronic ... not by choice as it was the one they offered me 15 years ago. I have the 640g version.
It makes life much easier.. I could never get my basal right on the injections... my bloods were either too high or too low ... too much insulin and I’d hit 1.8 in the night, a half a unit less and I’d be up to 17/23 in the morning so the pump was the only solution.
Obviously it’s not perfect but it does give you a lot of freedom, although it’s a pain when it doesn’t work ... but since using the metal catheters it’s much better, after a few years the plastic ones became a nightmare for me.
Get your clinic to show you a few and ask the pump users on the forum, they will be full of knowledge and quite happy to share it and their experiences with you.
I personally wouldn’t go back to injecting, I had to a few years ago because my body wasn’t accepting the cannula, and it was a nightmare. Luckily, that didn’t last forever and I was able to go back on the pump.
Just like to finish by saying I am so proud of you for being so brave and getting your injection!!! Xx
Thank you! I’m going to clinic on weds so going to ask about having a pump. Thanks so much for your words of reassurance and encouragement- I’ve never really been on forums like this before. I think being diabetic for as long as I can remember it was never really a big deal to me, however since this has happened the advice from everybody here has been amazing and really helped me to feel better about everything. It helps so much to hear from people who understand and have been through it! Xx
Thank you! I’m going to clinic on weds so going to ask about having a pump. Thanks so much for your words of reassurance and encouragement- I’ve never really been on forums like this before. I think being diabetic for as long as I can remember it was never really a big deal to me, however since this has happened the advice from everybody here has been amazing and really helped me to feel better about everything. It helps so much to hear from people who understand and have been through it! Xx
Hi Pippa,
I’m in a similar situation to you! Massively improved my control but have now been diagnosed with pre proliferative retinopathy after being diagnosed with M1 maculopathy 6 months ago..
I’ve been told to go back in 3 months but tempted to seek a private consult too.
Have you tried the mask?
How are you doing now?
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