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Macular Society
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Eyelea and Pain Killers

I don't take drugs, not even aspirin. However I have a choice between Eyelea and losing my eye. Eyelea is so painful and doesn't work. I had a shot and can't recognize my spouse across the table. All Pain, No Gain.

So should I continue with the Eyelea, take morphine for the pain and believe that it is halting but not improving the condition or just let the eye go?

I suppose the question is, how much worse can this get than the current condition? I can't hardly see but I am assured the Eyelea is halting the progress, not improving anything. And the Eyelea is incredibly painful. How much more vision will I lose if I just quit the Eyelea.

27 Replies
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Hello Burnt,

I am sorry to learn about your painful Eylea injections.

Injections should not be painful; you should report the pain to your eye doctor.

It could be that you have an allergy to the iodine based antibiotic eye wash?

Please see our factsheet about pain after injections at the following link;

macularsociety.org/sites/de...

Best wishes

Macular Society

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Eyelea does improve sight for many conditions- you don't say why you are having it? It may well be the iodine and you can ask for this to be rinsed after the injection. Don't switch from iodine completely unless you really have to as it reduces the risk of infection being introduced to the eye.

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I have macular degeneration. The doctors, few years ago, were saying that eventually the shots would stop the leaks and we would live happily ever after Tra La

Now they are saying shots every few weeks forever and the shots don't do anything more than stop the progression, supposedly. I read on these blogs from people who are wonderfully excited to have Years of Shots and Two Lines on the Chart but alas, Still Have Black Spots and Wavy Vision, how wonderful?

My good eye wavers two lines and is not leaking and doesn't get any shots. I have anything from 20/25 to 20/50 so where is the gain.

I don't see any improvement with Eyelea so the question remains, if I quit this silly game of all pain and no gain, how bad will my vision be? Will it be so much worse that these Painful shots are worth the bother?

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Hi again Burnt,

I am afraid that your question about how bad your sight will get if you stop injections is impossible to answer.

Your sight is however likely to deteriorate further.

Sadly, the injections are not a cure, but a treatment to try to prevent further deterioration in your sight.

The worst case scenario would be complete central vision loss.

Best wishes

Macular Society

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This is a serious question as I can possibly locate a laser as an option But: If I can't or the doctor insists on Eyelea then I have to make a choice.

Before the Shot I can't recognize my spouse at a distance of 10 ft

After the Shot I can't recognize my spouse at a distance of 10 ft

So, if I don't do the shot then what does it mean in terms of worse? Loss of central vision means what in that context?

I am deciding whether to do these incredibly painful and dangerous shot to Prevent something that I haven't really considered or had adequately explained. What happens if a person doesn't get the shot?

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you need to ask your consultant about the future if yu stop injections as he/she has your full medical history.

My mother had AMD before there were injections available and she was registered as blind and could not see anything except a little side vision

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My mother also eyesight virtually gone by 93, there was no treatment, think you are lucky to be treated, it is worth the pain,, to stop further deterioration, listen to the Specialist. I am getting good results so far since having injections eyelea and no further deterioration. It is normal not to see properly on day of injection.

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Dear Burnt,

Injections are now the main form of treatment for wet AMD. Historically in the UK, until injections were available on the NHS, laser treatment was the main available form of treatment. The problem at the time was that it sometimes also caused surrounding tissue damage. Lasers have moved on since then, however, injections are still the usual preferred form of treatment as due to the method, there is less danger of any negative impact on the eye as a result. It is important that you discuss the issue of pain during or after injection with your ophthalmologist so that they can address the issue. The injections should not be painful. It is the ophthalmologist who would usually determine the best form of treatment for your eyes based on how they are responding. Therefore it is important that you discuss the possibility and advisability of laser treatment as opposed to injections with them.

The function of the injections for wet AMD is to suppress the abnormal blood vessels, stabilise the eye, maintain vision and prevent further damage. Ophthalmologists would not normally administer the injections if there was no central vision left to save. However, you would need to talk to your ophthalmologist to establish how much central vision you have left. In the UK, under NICE guidelines, they stop giving injections when an individual’s visual acuity deteriorates to 6/96 or worse on the Snellen eye chart.

Without the injections then there is nothing to suppress the abnormal vessels which are developing behind the macula and leaking blood or fluid. Therefore, there is an increased danger of permanent damage occurring in the form of scarring, which cannot be reversed.

The macula is about the size of a grain of rice and is responsible for our ability to see fine detail, colour perception and faces. In the worst case scenario, if an individual loses all of their their central vision, then they are unable to see faces, colour perception diminishes and they are unable to see fine detail. However, unless there are any other complicating eye conditions, then they usually retain their peripheral vision.

If the health professionals maintain that the injections are successfully holding your eye stable then this is obviously positive and indicates that the injections are performing their role.

Occasionally some individuals can experience a slight improvement in vision within the first few injections, but this is variable and unfortunately does not apply to everyone.

I am copying links to our Guide to AMD, Treatments and Emotional impact:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

macularsociety.org/sites/de...

Kind regards,

Macular Society Helpline

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My retinal specialist recommends lasers but he states that the lasers are no longer manufactured so he doesn't have one. He referred me to another specialist who has the machine.

Thank you for the reply. It is a what I needed to consider.

I am at 20/70 in the left eye. A few years ago before I had laser surgery in the right eye I spent months at 20/200+ while receiving shots.

The difference between 20/200 and 20/70 is Blind in One Eye and Can't See Out of the Other.

Not too much to choose betwixt the two when considering incredibly painful and dangerous monthly injections.

Again I thank you very much for your thoughtful and detailed reply. It is exactly the information I was looking for.

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Dear Burnt,

I am glad that this was useful.

Please do not hesitate to contact us if we can be of any further help.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

Macular Society Helpline

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Not completely understanding, how LONG does the pain last. I've had about 6 Eyelea injections and 6 Avastin. Only twice have I felt a pinch when it is injected, and never had pain afterwards.

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I also have wet macular degeneration and very painfull shots. My eyes are worse after 2 injections and have had the same thoughts. Why get the shots when they aren’t helping. Are we just test subjects? My eyesight was better before the avastin shots.

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I have had 2 Avastin shots and it did help the wavy line distortion, but my central vision is more blurry and washed out than before. My opthamologist does not acknowledge that my vision could be worse. There was no change on the OTC scan so now he wants to do Eylea. Now not sure I trust him and looking into alternatives.

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I have had 9 Lucentis injections and 1 Eyelear injection over 3 years and they have helped and eyesight def improved after first course of 3 injections .eyelea injections do seem to hurt more, had a very sore eye for a couple of days. Paracetamol helped. I think it's worth having the injections if it means blindness is held at bay. Do you think it's worth continuing for a while to see if you are gaining from the injections?

Best wishes.

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One other consideration which might alleviate the pain is to ask your doc to inject in a different quadrant, it works for some. Having the Betadine thoroughly washed away after the injection might also help.

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Do you mean inject in a different area of the eye? I never had pain from Avastin shots, but alot of pain with Eyelea

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Yes, sometimes it helps if the injection is in a different area. If you have had many shots in one spot, a lot of docs have their own preferred site, scar tissue can build up making it more difficult to insert the needle. I have heavy scarring but fortunately I feel only slight pressure and no pain from Avastin. Lucentis or Ozurdex. The last one is a steroid implant which requires a larger needle.

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If pain is actual inj then insist on more preop anaesthetic and different quadrant as has been mentioned.

If pain is post inj then insist on good washout and soothing drops.

For wetmd the inj are designed to make condition stable not improve sight although it may improve a little ( mine used to). Sight is usually worse straight after inj though.

All of us have to make our own decisions and I struggled after a traumatic first inj but for me, if sight is worsening with the obvious end of central blindness looming then a week's discomfort is worth three weeks of being able to read.

I wish you well whatever you choose x

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It annoys me when i hear of people suffering so much pain ...in my clinic ..its down to who does injecting ! My app is due Tues and no appointments ..again...another round of phone calls Monday begging :( sorry to moan but it makes me so anxious ,

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Jjnan, sorry to hear you are in this position again. I do recommend complaining to PALS. It brings the issue to the attention of senior management who want to cover their own backs so are more likely to do something.

It benefits other patients too so it's not a selfish thing to do.

I would definitely put in writing ( either PALS or clinic manager) your concerns about potential damage the longer you have to wait.

Good luck x

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I will do that, it seems a last resort , as you say not just for me, all i'm told is to many patients not enough clinics, i feel so sorry for the elderly patients with no one to help them, those poor souls will suffer x

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Please don't give up on Eylea. When my brother developed AMD there was not the range of treatment available so he has been registered blind for over 12 years with all that implies. Please tell the people applying the injection if it hurt at the time and they should give more anaesthetic drops. Do make sure that you have viscotears/hydromellose eye drops ready to use when you get home as the iodine can crystallise and irritate your eyes. Make sure everything that goes near your eyes is sterile so only use boiled and cooled water if you need to. Do take some paracetamol and I'm afraid you cannot expect instant results it may take time. Good luck!

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Very interesting to read all the comments I have had 6 Eyelea injections now and they seem to get more painful each time. Not the injections but the discomfort 3 hours or so later and my eye seems to stream with fluid. Sadly I have only just read this and all the strategies for dealing with it. I have CRVO so the eyelet has cleared the back of the eye a couple of times leading to improved vision but as the retina is damaged I am not expecting to get better than60% or so vision in the left eye. Does anyone know what the chances are of it spreading to the right eye?

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I have had a crvo too which was a bit of a shock and although not at all nice I could actually still see initially but, everything looked as though it was covered with bubble wrap or looked like I was looking through snowflakes. Unfortunately, my sight then deteriorated quite quickly a few weeks later until I could not even see how many fingers the Doctor was holding up in front of me. I was beside myself but, was immediately given an angio and Doctors were brilliant and explained it was quite a bad one and there was lots of swelling and haemorraging behind my eye. He arranged for me to have loading dose of eyelea, one injection per month for 3 months after which he would review my case. I also have narrow angle glaucoma and my pressures in both eyes kept going up and up. However, things improved and the eyelea took effect....and cleared a lot of the swelling which improved my vision. My eye pressure is now controlled with drops which I will be on for good and I also have to have other drops to keep my eyes from becoming too dry. After review and as they were pleased with results so far, I have been offered more injections. Cannot speak highly enough of all the people who have been amazing at my Eye Department. I still worry though, as you do about it happening to my other eye?

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Hi Valentine, see my reply to Chris re worry about other eye. Hope it helps.

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Hi Chris, a late reply from me but just seen your comment. I had brvo over 3 yrs ago, no repeat in other eye. It isn't a thing that ' spreads' but rather a culmination of factors. My consultant told me the chances of it happening to my other eye were negligible. I worried at first but now am not. Hopes this helps.

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Hello Burnt! So sorry you are going through this! No doubt about it, it is both hellishly painful and inconvenient. I was in the same spot 5 years ago. My eyelea injections are every 28 days and if I don’t remind the technitions to give me extra numbing meds (as the chart says) the pain could cause me to fAint as I once did. But the alternative is blindness for me as I only have some vision out of one eye. Thst would be terribly inconvenient!

Now the good news is...my md told me that he is doing clinical trials on three new drugs for wet macular deg. Of these trials one drug is almost finished stage 3 and will be sent for approval very soon. This process will take about a year for it to get to market But...when that happens patients with this diagnosis will only have to have injections every TWO months because it effectively slows the leakage down that much.... so my advice? Hang in there, maybe this new drug will do the trick for you while the one you are on is holding the fluid between injections. Also this...if the drug shows a great deal of promise with this condition, then they could speed up the approval process to get it to market faster.

I hope I’ve persuaded you to hang in a there a bit longer. If you like I would be glad to let you know when he sends his study off for approval that way you could have some idea when it could become available.

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