Great news, not so great news and the AMD learning curve

[Catseyes235]

My 1st Eylea injection in my left eye was June last year after which I've gone from every 4, then eventually 6, 8, 10 and now a 12 week gap between injections. The great news is that after my next injection in another 12 weeks they will stop but continue to monitor as the wet MD is pretty well dry now. The doctor I saw today confirmed that there is no absolute cure and the condition will be with me always but with monitoring and appropriate treatment should be held in check.

The not so great news is that the dry AMD in my right eye, which they spotted was changing to wet and despite having no discernible effect on my vision, is now needing treatment so I start a new set of injections but this time with Avastin in November.

I could have had both eyes done today but couldn't face that - though I could have done an immediate compare and contrast! As it was I stopped off to buy myself a treat and a few other goodies on the way home. I should really have used the small phial of eye drops sooner when I was out as just that extra time means the iodine crystallises and feels scratchy.

What I have learnt is - be good to yourself - take time out after the injection and use Hypomellose drops as often as you like. Seriously! After my first injection I felt maybe I should use every hour or so and felt wretched sore and scratchy. Now I may use whenever it is sore and I constantly remove crusting with clean cotton wool or bud using pre boiled water or even the Hypomellose. Now I only have a few hours discomfort if any. I also take paracetamol and get some sleep - I intentionally don't sleep much the night before anyway so as I'm too tired to care much when I get to the hospital. Whenever i wake I give eyes a good clean again.

I used to think the drops were a bit expensive to use liberally but have changed my thinking on that as you can't keep them very long once opened anyway. Using drops liberally as and when was a better thing than any savings made and ending up with unused drops.

Award yourself a little treat after ( today was a lemon and sultana Danish pastry). After all it's not everyday you get a needle stuck In your eye. (When I give blood there are stickers to say 'Be Nice to Me, I Gave Blood Today!' Ha ha I feel in need of a sticker . . may also explain to people the dark glasses, sometime blood shot eye and druggy looking pupils!?)

I don't know if taking Macushield Gold, as the first doctor recommended, contributed to my good response to treatment but I did take it for a few months but now take a much cheaper product with bilberry, Lutein and zeaxanthin.

I still have a good diet and eat dark leafy greens and blueberries but the doc said diet alone can't give the concentration of supplements so I will continue.

Another thing I've learnt is to Speak Up . . . Remember It's a learning curve for those giving the injections too and if no one says they've experienced pain during or after the procedure they won't think they need to improve their technique which the nurse I saw today certainly has. I always insist on having her assistant's hand to hold tightly too and so far he hasn't complained.

I daresay I'll be giving an update on Avastin and in the meantime good luck to all my fellow injectees!

[Hidden]

Hello Catseyes

I am pleased for you that the AMD in your left eye has dried up for the time being. Like you, my eye has always responded well to treatment. The gaps between injections was very similar to yours except there was never a 3 month's gap. During the two and a half years' of injections I have had 3 long pauses of 4 to 5 months, but unfortunately the fluid-build-up always returned. After the last break it came back very suddenly and with vengeance, but again, eylea sorted it quite quickly.

Unfortunate for you that your other eye now needs treatment. Commiseration! I agree, 2 injections in one day sound a bit much to face, though some people have it done. I am dreading the moment this will happen to my right eye with dry AMD, though at the moment there seems to be need for it. The sooner they catch it the better the result.

Are they not supposed to talk you through the use of Avastin and ask you for permission to use it? I suppose that most of us will be switched to Avastin before long due to the cost-cutting scheme. Do let us know how you fare with this alternative treatment.

At our clinic we are always given a phial of antibiotic (chloramphenicol) and the same in ointment form for using at night. I was told by one nurse not to start using either until the next day as there would be no benefit in using it the day of the injection. I have never used artificial tears on the first day either - maybe I should? Although I use them whenever my eyes begin to feel weepy or sore I have never thought of asking about that at the clinic regarding the first day. You are right about speaking up.

Keep your little treats up. A little cheering up never comes amiss. Best wishes.

[Catseyes235 in reply to Hidden]

Yes the doc talked about the Avastin, research etc and got my permission. I'd already read up on it. NICE won't let them go with Eyelea until condition worsens and they want to catch things early as poss. My bro in Scotland is on Eykea but when they thought he may have had a reaction to it they tried Lucentis but put him back on Elpylea and he's been fine since. He started his treatment a year before me and has only just got to the 12 week gap.

I get the chloramphenicol administered before or after the injection or maybe both can't remember. Off to have a bit more treat then visit my blind brother . .his AMD happened well before the treatments were available so am always grateful to all those researchers. Keep well!

[Bobbie915]

Good and bad news nearly always seem to go together! My left eye was affected first, followed very quickly by the right. I am also on Eyelea. I have had many injections in both eyes at the same time. To start with, they wouldn't do them both at the same time, I would have to wait for someone else to have their's done and then have the second injection. That was changed and both were done at the same time. I always remain them to go easy on the iodine which did give me a lot of trouble. Yes, technique is probably the most important thing and my clinic seems to have now got that right. I buy the Boots eye drops with no preservatives that can be used for 6 months.

I wouldn't say Eyelea has been great for me as I have lost central vision in my right eye and the left eye is very poor.

Good luck to you and as Ayayay said, please let us know how you get on with Avastin.

[Catseyes235 in reply to Bobbie915]

I will do. You are terrifically brave having both eyes done at once. Sometimes I have few after effects and other times like yesterday when I stupidly let the iodine dry it felt gritty for hours but greatly helped by eye drops which I get from Superdrug as cheaper than Boots and recently had a buy one get second half price so I stocked up for this session and will have another for adventures with my right eye and Avastin.

yes the iodine is so often the cause of the discomfort. Not sure if ther is an alternative but stopping it drying seems best.

Good luck with your ongoing treatment.

[Bobbie915 in reply to Catseyes235]

That is interesting about not letting the iodine dry. You are the first I can remember that has mentioned it. I know some say they do not use tear drops on the first day but my clinic have never told me that.

[Catseyes235 in reply to Bobbie915]

Some distant memories of chemistry there!! Or old bottles of iodine from the fifties? I had to avoid grit and things scratching my eye surface when had thyroid eye disease . . Was easily scratched and used copious amounts od Viscotears mainly.

[Catseyes235 in reply to Bobbie915]

Also Hypomellose (I get mine from Superdrug cheapest -they make several and this one is called Moisturising Eye Drops - is sealed and completely sterile (I only use fresh one after injection so absolutely no risk of infection)

[pinkperfection]

Hello Catseyes your message is very encouraging. After Lucentis did not seem to work for me they started me on eyelea which after three injections also has not removed fluid. Now I have not had an injection since August as I got an infection and they wouldn't do last one. Infection seems almost clear so hoping they will go ahead next week as it will be nearly three month gap. Enjoy your treats we all need cheering up and thanks for your helpful advice.

[Catseyes235 in reply to pinkperfection]

All the best to you!

[Lizleiper]

Helo catseye 235

Ian pleased to hear you are having success with your eye injections . I have written on here a few times but not quite sure about how it works . My reply’s are stuck where I don’t want them to be 😀!

I have been chatting about infection in my eye ,stopping me from having my last injection ,which was a big worry . Like you I sometimes have injections 6, 8 , 12 weeks in between . Even longer sometimes . My eyesight is very good and legally still driving ,so I am absolutely delighted about that . The only trouble I have is with the pain 4 hours later after injection . Most of the time I suffer it as it is fine in the morning . But getting the all clear from infection I had another injection on 22nd October. Everything went to plan and everybody involved extremely nice and was given plenty anaesetic . Pink iodine used as I am allergic to normal iodine and eye was well rinsed afterwards . After 2 hours I had the most debilitating pain in my eye and as time went on got even worse. I realise I would need to go to accident and emmergency as the pain was so bad . I could not open either if my eyes ! My sister had to guide me to the hospital. When I went in the junior Dr was very kind and could see I was in terrible pain , I asked him to put in an anaesetic drop but said that was not a good idea, instead he gave me 2 cocodamol and 1 ibruphen tablet , and left me in Antony for an hour as they did not touch the pain I was having . Change over of Dr a more senior one . And tiold me that I must have a very high pain thresh hold to suffer the pain of a clipped cornea. I told him I would like him to put an anaesetic into my eye and he said ‘let’s do it’ .one drop and I had instant relief . I managed to have 4 hours sleep and could put up with secondary pain .

I am going to telephone the macular number for help . I have had at least 20 injections so I am not new to this . What I am going to demand is that I can take anaesetic drops home with me in case this ever happens again ! Just do ‘t Think they will do this though.

I am telling my story incase it happens to anyone else.

Has this happened to anyone else . If so I would appreciate a reply . Thank you to anyone hpwho reads this .

[Catseyes235 in reply to Lizleiper]

Sorry to hear of the problem you experienced with your last injection. Did the doctor say how it could have happened? And do you keep your eye well ' moisturised' i.e irrigated after with drops to prevent anything scratching the cornea? I had many a painful scratch with thyroid eye disease when coukdn't close kids properly, and similar after first injection where I left my eye for hours without drops. Never heard if a 'clipped' cornea though. I take 2 paracetamol either before or just after injection to get ahead of any pain but it's the drops that seem to help mostly. Good luck with everything and hope it doesn't happen again. .

[OLdCroc]

Hi. I know this is late but i am just catching up!

I have been having injections for 5 years and had Avastin, Lucentis and Eylea. I am getting injections in both eyes and had them done yesterday - with Eylea.

I have suffered the pain after the injections on more occaisions than i care to think of and nothing seemed to help. However, for the last few times i have tried taking antihistamine tablets (for hayfever) as suggested by my daughter who is a nurse. I first took them on the day of the injections and the was a little relief then took them the day before and the relief was greater. For for my injections yesterday i started the tablets 2 days before with the last tablet on the morning of the injection. Well after my jabs yesterday i even asked my wife if she wanted to go shopping! No irritation at all!

Interestingly i was asked for the first time to consent to the dilating drops for the scans. I said ok and had them but i did have a set of scans done once with no dilating drops and they were fine. So next time i will see if i can get away without having these. I had a scan done by my optician and he did not use drops and there were no issues. By the way these scans were far superior to those done by the NHS and he used a much smaller machine. The 3d images were amazing!

So my message is to try antihistamine for a couple of days prior to your jabs and see if there is any relief. It will be interesting to see if this helps anyone else.

[Catseyes235 in reply to OLdCroc]

That's interesting. So far I haven't been in too much pain . .rather than the gritty irritation which is soothed by eye drops and a dull pain which responds to paracetamol. Is your condition responding to treatment or stabilised? Have you noticed different responses to the different drugs? I may give the anti- histamine a try . .got nothing to lose. Thanks for your input and maybe you could post in a fresh strand for those it could help?

[OLdCroc in reply to Catseyes235]

I started with Lucentis in one eye about 5 yrs ago and that was changed to eylea after a year or so mainly because of the interval between jabs. Eylea has stabilized that eye but not cured. I now have the start of a cataract in that eye.

My other eye started a couple of years ago and i was given Avastin. That did not improve things much at all. Sight got worse so 3 months ago i was switched to Eylea. It appears that there has been a slight improvement after 3 jabs. Hiking thumbs though and don't expect miracles after the experience with my other eye.

I tried to persuade doc to give me eylea erlier but they wouldn't have any of it until my sight got below a certain level. I am convinced that i would have had better results of they had started eylea as soon as i had the symptoms. How short sighted! (to coin a phrase!)

[Catseyes235 in reply to OLdCroc]

Yes that is what I'm worried about that they cannot use Eylea on my right eye because my sight is so good. Ludicrous argument but it saves lots of money given the costs of each. They actually saw a good response to the very first Eylea injection on left eye. Oh well we'll see how it goes but may be a false economy.