Eylea experiences please: I was very... - Macular Society

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Eylea experiences please

31 Replies

I was very frightened to have a sudden extreme distortion in vision in one eye just before Christmas- my optician immediately referred me to a consultant in January and l have a macular oedema (think that’s correct) probably due to extreme short sight -12dioptre in that eye.

I was told the only treatment option was to start immediately on Eylea injections , I had my first in Feb and my second yesterday. I will be honest, I was terrified of the whole process, people say it will get easier in time, but yesterday’s was very difficult.

My GP gave me some Valium for the first one, then prescribed some beta blockers as well for the second, which did calm me down a bit. The positive news was I went from not being able to see anything on the eye chart first time round, to being able to discern three lines. Obviously that’s fantastic, but I’m struggling to come to terms with the injections themselves.

I would be interested in others’ experience as the only other person I know having Eylea is in her mid eighties for AMD. She is doing well with it. I’m 60, not diabetic etc. Just need to get over the fear I suppose.

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31 Replies
Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear EllieDavies,

Is it primarily your fear of the process that you are trying to combat, or are the injections at all painful?

We have a Working Age and Young People's Service (WAYP), where it is possible to connect up with others of a similar age and share experiences:

macularsociety.org/support/...

In addition, we have a free telephone counselling service that may be of help:

macularsociety.org/support/...

You are also welcome to contact us direct if you would like to discuss the situation in more depth.

The Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

in reply to Rosalyn-helpline

Thanks so much, Rosalyn, it’s the fear of the process more than anything. I’m very fearful of my eye being touched, to the extent that the first injection was done by a doctor without a speculum. The second injection was done by a nurse injector who needed to use one and I found the process terrifying.

There’s so much help on offer I didn’t realise was available from The Macular Society, I’ll certainly explore it further. I’m just hoping for some success because the thought of it is so awful.

I’ll definitely look at all the links you sent, and really appreciate it.

middlejoel profile image
middlejoel in reply to

I've had 6-7 injections by a doctor who doesn't use any tool to guide the needle. He is very good. have not had any problems so far. I am 84.

in reply to middlejoel

Thank you middlejoel. Are the Eylea injections actually improving your sight, or preventing it from deteriorating further?

Joankelley profile image
Joankelley in reply to middlejoel

The doctor numbs the eye, so the injection does not hurt. My retinal specialist does not use any tool, the jab is over in a second.....his one nurse held my hand. I a, not worried about the injections because I know they will preserve my sight. I will do whatever it takes to prevent blindness.

Penelopeflower profile image
Penelopeflower

HelloEllieDavies

I have been having Eyelea injections for over a year now, at first of course it is very scary, the thoughts of it much more than the actual injection, which only takes a few seconds in any event, but you will get used to it, and of course the benefits of it improving your sight greatly help to make the process a little more acceptable. The Macular Society and the links they have given you will I am sure help greatly too. Very best wishes to you, it will get easier.

in reply to Penelopeflower

Thank you very much for your thoughts. I’m sure I will (have to) come to terms with the process, and I was encouraged by the early improvement in my sight. I’m really impressed by the information from the Macular Society too, but it’s still a pretty scary process! I’m holding on to the thought that I might not have to have them every four weeks at some stage in the future.

Hi Ellie,

I have been having the same injection for over a year now and know exactly what you are feeling.

I used to break down after them and cry !! Very embarrassing. I too take valium now before which really helps.

The nurse who normally does it is brilliant and I hardly feel it with little pain afterwards.

However the last injection was horrific -done so badly- I was in so much pain I swore I would never go back.

I made a formal complaint and the clinic has admitted they were at fault. I was just unlucky.

The choice we have is to have the injection and deal with the fear before and during or our sight will deteriorate. And they do work.

I am 68 and a lot of the patients at the clinic are over 80 who would never complain. I was so angry at the whole process which is like being on a conveyor belt. The staff are dismissive and cold and I hope my complaining will cause an improvement.

I am due to go back on Monday but believe me I am petrified.

We have to be so brave but what else can we do ?

in reply to

Hello, and thank you so much for replying. I feel embarrassed about my crying, but I find it so traumatic that I have to accept it. As I am widowed and live a long way from the hospital - 40 miles and poor public transport - I have relied on an old friend to drive me but don’t like to expose him to such trauma!

It’s good that your clinic accepted responsibility, but I totally get the feeling of being on a conveyor belt. I’m moved from room to room, the scariest bit is getting a doctor to mark which eye - how could they get that wrong - but it’s what happened to you last time that is of concern. Please do let me know how you get on this Monday, I wish you all the best with it.

As you say there is little else we can do, but, I’m hoping you have now had the worst experience possible, and it will be much better from now on. Take care, and thank you for taking the time to respond.

TwasBrillig profile image
TwasBrillig in reply to

I too went to a clinic where just like yours, the staff were “dismissive and cold”. There was one injector (a sister) who was particularly nasty. My husband often witnessed her being sharp and bossy with other patients too. Sadly older folk are easy to bully. I asked for a different injector and it’s quite possible she took it personally. The clinic frequently lost notes and after one injection session (both eyes) I had a terrible reaction with severe pain and my eyes watering profusely. I went straight back but they couldn’t find my notes and wouldn’t let me see a doctor without them. We gave up and left after forty minutes. It was months later when I went elsewhere and paid for a private second opinion (for a different reason) that I was told I had become intolerant to the iodine and that each time it was used was ‘one step back’. Another time they used the iodine first instead of the numbing drops. Once I felt dizzy after an injection and I was told to rest on the injection bed for a while. A minute later a different nurse came in and said “what are you doing, lying there? You’ll hold all the other patients up!

I’ve never posted all this here because I didn’t want to upset others or scare newcomers. It wasn’t until I read your comments that I decided to speak out.

The hospital did some damage to my eye. but said they hadn’t. I won’t go into details but this led me to seek that second opinion privately. The damage was confirmed and that was when I decided to go elsewhere. Up to then I hadn’t realised this was an option. I desperately wish I’d done so years ago. The hospital I now go to is so different it feels like a private one in comparison. All the staff are professional and compassionate. They are also very well trained and I have never witnessed any unkindness or bullying. Injections are never rushed and the nurse doing it is kind and responsive.

Thing is, before I sought that second opinion I was on the point of ceasing treatment because it was so traumatic. That sister had been particularly unkind and I just couldn’t face any more of it. That place made me feel I was a difficult, demanding patient for asking for reasonable treatment. I want to remind all of you in the UK that you can easily transfer to a different hospital under the AQP (any qualified provider) scheme. You simply decide where you want to go then ask your GP for an urgent letter of referral - urgent because you need regular injections. Obviously do as much research as possible and work out travel time. Mine’s an extra forty minutes but I’d go twice that distance!

TwasBrillig

in reply to TwasBrillig

I am so sorry that you had to endure this and so glad you have resolved it and are now getting better treatment.

There are so many who suffer with this potentially painful and traumatic experience. A lot suffer in silence.

We are held to ransom over this. Put up with bad treatment or go blind.

My last injection was so bad ( previous not so bad ). I swore I would never go back. I made a formal complaint and the clinic has admitted they were at fault.

They are now bending over backwards to make things better next time.

I have an appointment on Monday which I will not go to and wait for another one to be made when I am less traumatised.

When I have the written response from the formal complaint I shall forward it to my solicitor and I intend, somehow, to make public the suffering so many people go through.

It is inhumane and must be changed.

All very best wishes to you.

in reply to TwasBrillig

I am sorry that both you and @Babyeyes have had such a difficult time with it all. Being new to the process I suppose it has reminded me that I do have some say and agency - it's difficult to remember this when you are nervous and lying down in the treatment chair and people are coming at you with various instructions. Good point, well made. Thank you.

RP1944 profile image
RP1944

Hi Ellie, like you I have Eyelea injections, which I hate but I persevere as they work and help me keep my sight in my left eye. I have problems with the anesthetic which never seems to do it’s job properly, so most, not all, injections are painful. I’m 77 now and have been having injections for about six years now and will continue to have them until they no longer work. I’m sorry you find the injections so distressing, but as you say they are improving your sight, maybe you will have to grin and bare them, as a lot of us do. Best wishes to you.x

in reply to RP1944

Thank you so much for your good wishes, six years worth of injections is an impressive toll. I think the anesthetic didn't work as well for my second one, which was part of the cause of my discomfort . Mind you, if they are working then I know it is important to continue, but it's difficult to come to terms with. I was hoping people might say they had half a dozen and didn't need any more, but in truth, I know it's unlikely!

3furryfiends profile image
3furryfiends

i fully understand your fear!! for the first 6 injections i had no pain but at the 7th injection the nurse scratched my eyeball and i was in agony and i lost the sight in the eye for several mins-it all went white.i lodged a formal complaint and was told that all injectors would have their "competency " checked but that scratches were an acceptable risk!! Do not suffer in silence-you will find people at the clinics are elderly and they do not complain. I have raised my concerns and I now ask for extra anesthetic drops and time for them to work!! Don't let them rush you through the system.-i personally hate being called love, petal, flower , darling etc and i always remind them of my name!! Also check they wash out the iodine wash properly-as i have also developed an intolerance to this and my eye lid has now stopped swelling up!!

in reply to 3furryfiends

I think the extra anesthetic drops are a great idea. Strangely my first experience was not as bad as I anticipated, but the second was dreadful. I arrived at the clinic 20 minutes early, they were outside looking for me, and said, great, we can get you in and out quickly! I'm not doing that again. I have decided to be more assertive about the whole process, I know they don't want it to be uncomfortable for people, but I did get the impression they were keen to finish for the day!

JGer123 profile image
JGer123

Hi EllieDavies - Sorry you are dealing with that. I have had a number of injections, and I have a fear of needles, so I understand the difficulty you are facing. I've never had a valium or any beta blocker, but it is defiinitely a very scary thing for me.

For my condition (Chronic Central Serous Retinopathy) I have not seen any improvement from the needles, so we tried a laser most recently. What I will say is, try to do some breathing techniques and meditation, maybe even cold showers to teach your body how to deal with stressors. I am more of a hard-charger, never really into meditation, but after learning more about it and practicing it, I can see some positive effects from it, but I think the real changes occur within the body, so they might not be tangible from the start.

Wim Hof has a free app you can download and he teaches you about breathing techniques and cold exposure to help you and your body deal with stress. I also heard some podcast with a guy names Andrew Huberman (Stanford researcher specializing in Neurology and ophthalmology) who talks about exercises for your eye to improve eyesight and strengthen the eye.

Good luck with everything.

in reply to JGer123

Thank you for telling me your experiences, I, quite frankly, find the whole thing terrifying, and something I never dreamed I would have to go through. I'm sorry you haven't seen any process with the injections, and hope the laser treatment works. I think I might find that even scarier, tbh.

Thank you so much for the practical suggestions re meditation/breathing. I have restarted with Headspace and some sessions on my Fitbit app, but need to redouble my efforts I think. I haven't heard of the two people you mention, Wim Hof and Andrew Huberman, but will definitely look them up and try things out. As for cold showers - well, I live next to the sea and a number of people I know swear by a daily dip, just in and out in this weather. I have never seen the attraction but I did buy myself a wetsuit, so nothing lost etc. Or perhaps not!

Really appreciate your detailed response, lots to think about, great.

IvyRose2 profile image
IvyRose2

Hello Ellie, I have been having Eyelea injections for many years now, first in my Left Eye which is now stable, for @ 21/2 yrs and then in my right eye for 3 plus yrs it is now dry so I am hoping injections will be stopped soon. It has certainly worked very well for me. I have macular degeneration both my parents became partially sighted, there were no injections then. My eyesight is still very good, I am very lucky. I take Macushield also. And eat lots of blueberries, fresh veg etc. and exercise. Try to relax about the injections, I know it’s hard at first but you will get used to them and they are sight saving. I usually make sure I get everything done before injection and treat myself in the evening with something I enjoy. Good luck to you going forward. I am 68 and very fit otherwise.

in reply to IvyRose2

Thank you very much for your response, it’s encouraging to hear of your progress. I have never heard of Macushield but I will look it up. Like you I’m generally fit and healthy so this was a complete shock to me. I like the idea of treating yourself to, I have bought a small bottle of perfume before each injection and not opened it until afterwards! Mind you I felt so grim after the second I couldn’t be bothered!

rosyG profile image
rosyG

Ive had 38 Eyelea injections now ad have both eyes injected at present. The speculum is just to help you keep your eye open so don't be fearful of it. Just listen carefully to all instructions and you will be fine.

in reply to rosyG

Hello there - I am in absolute awe of the 38 injections- I’m in a state after two! I suppose I really don’t like the speculum because of the insertion, but I do know the nurse injectors have to use it, and they did use the smallest one possible, which was kind.

Hi there. Yes getting injections is difficult and oftimes painful from swelling and or the disinfectant used to keep the eye clean.

Yes it takes time to deal with it and if I think too much about it...I can freak out. ANd yes the first few times I had the treatment it was very hard to deal with it emotionally.

The way I overcame this was pretty simple for me. The outcome, for me, without treatment is blindness. That means no more car, no more seeing my beautiful wife's face and no more sketching my glorious trees.

A no brainer. for me. It is and was a do or die for me..do I want to improve or save my eyesight...yes, is the treatment scary and painful and just icky...yes. Am I woman enough to bear my fear for the "greater good"..yup.

Luckily I live in Washington State in the US, we have legal weed...I take my weed in my coffee and it calms me and makes me laugh..maybe it is because I can easily laugh that helps me through.

I know valium, I use to take it back in the 70s...you might get yourself some chamomile tea and drink it just before you leave yur home for the shot. Try some breaths to calm yourself. Crying helps too even after the injection...I cry a lot.]

Allbest

Hello Hollygg - thank you so much for your upbeat response. Like you, I kind of know it has to be done or I will lose the sight in one eye. The way the consultant sold it to me was, fine, don’t have them, but if something happens to your good eye you’re likely to go completely blind - which put it into context really. Thanks also for the tips, I’m much more of a double espresso type than chamomile tea but I should perhaps swop to decaf for a few days beforehand. I think it’s a natural reaction to cry afterwards - I welled up when they told me of the improvement in my sight after one injection then the nurse said, don’t cry yet, you’ll dilute the anaesthetic! Many thanks for the encouragement!

TwasBrillig profile image
TwasBrillig in reply to

You might find some helpful tips here:

healthunlocked.com/maculars...

ayeaye profile image
ayeaye in reply to

hello Ellie, it sounds horrible what happened to you in the clinic with the impatient nurse. No wonder you were shocked. I have had 1 and a half years of injections, beginning with Avastin and then changing to Eylea. They are done in the Eye Department of a hospital in Netherlands . Everyone is very kind and understanding. I think you cannot get through this without a compassionate environment and doctors whom you trust and feel are doing their best for you. Can you try different hospitals ? Its also really important that you can call them and talk to them about any problem or fear you have about your eyes, without feeling that you are bothering them. Ideal is to be able to go there any time during consultation hours without an appointment and be able to see your doctor if you are very worried about pain or a sudden change in condition. I think if you feel secure all round about your treatment it will be easier having to deal with the injections and uncertain future of our eyesight because you dont feel as alone if you feel you have a concerned team around you,

In the beginning the injections hardly hurt at all, but now I am becoming more sensitive. I ask for extra anasthetic drop and it works ! Also they MUST rinse the iodene out really well. THis means asking you to move your eyeball in all directions so the water gets everywhere, not just sloshing it over in one go.

We cant predict what will happen with our eyesight, and every case is different. But one thing is sure ; For most people the injections significantly slow down the rate of the damage, and for a good number hold it at bay for years. For this reason I have learned to be happy about the injections and the other week even found myself craving for one as I noticed the need for a vision tweak! So good luck with everything and I hope things will get better for you as quickly as possible

TwasBrillig profile image
TwasBrillig in reply to ayeaye

This is an excellent reply with really helpful advice!

Catseyes235 profile image
Catseyes235

After 3+ years of Eylea injections with injections in both eyes for over a year I can say that I am just about getting used to them! From reactions of people I can tell that even the idea of being injected in the eye is pretty shocking! The reality of course is that any discomfort is, or at least should be momentary not that that really helps. My friends know I’ve got injections coming up because I’m a bit snappy and distracted as the day of treatment comes closer.

I have noticed a shift though in that I am more accepting and resigned to them since COVID as the hospital eye unit have been so good at keeping things going and a mini stroke last summer meant I had to wait a good while before injections were resumed so I was extremely grateful when they were as one eye had a bleed in the meantime and had to go back and have four-weekly injections when had previously been spaced to 10 weeks.

So go with the flow for now and take diazepam or whatever sees you through and after a while you’ll hopefully feel okay about them as being part of life’s rich tapestry! Good luck!

P.S I forgot to say I asked if the assistant could hold my hand every time for the first year or so. I felt like a wimp but this they were kind enough to do !

Lagrene profile image
Lagrene

Hi, I had 2 Avastin injections last year and experienced distorted vision after the second one. This lasted for a couple of days then went. Also had Lucentis on Saturday 6 and have experienced no side effects yet. It is worrying when distortion appears as you always think will it be permanent?

DevonianA profile image
DevonianA

Yes, you are so right, it is extremely frightening to be given this diagnosis and then find out they will be sticking needles in your eye. I delayed things for several weeks but on return from a holiday felt I had to get on with it. Someone had written, it is never going to get better without treatment and of course they were right. Having always hated anyone touching my eyes, I was surprised to find that the treatment was not nearly as bad as I thought and it is now over 3 years. My eye was over -7 and I wished there had been more information to very myopic people and then made it my business to find out all I could. There are new trials being carried out all the time so maybe one day, treatments will be easier. I was in my late 70's and had been myopic since late teenage. Then I had cataract ops and my good eye is now good enough to go without glasses for every day life. Fingers crossed it remains so.

BetaFunction profile image
BetaFunction

I have the same issues and the same age. I get injection every 2 weeks for the past 7 months. My anxiety is so bad that my eye doc. recommended I seek therapy.

I always have side effects of pain etc., and I am terrified of getting. Endophthalmitis.

You are not alone in your fears.

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