Eylea injections

[Eyecloud]

Hi. I have just been diagnosed with wet macular degeneration. My eyesight is pretty good, just a wavy line in the corner of one eye. I was given a booklet about eylea and the side effects listed are pretty horrific, and says the odds are 1in 10!! This is very scary. My eyes are fairly sensitive at the best of times. Can anyone offer any advice or suggestions? Should I risk it? TIA

[Ceri2]

Hi Eyecloud, Sorry to hear of your diagnosis. It’s a lot of information to take in at once. It’s good that you have been diagnosed before much damage to your vision has taken place. The purpose of any of the injections is to try and stabilise the condition and prevent any further damage. Once the damage has been done, there is no opportunity to repair it later. For me anyway, it would be the injection every time. I’m not sure what the 10% risk is of. Lots of us on the site have had injections repeatedly for many years. Whilst not pleasant, they are the only way of maintaining sight. Good luck, I hope that none of it Is as scary as it must feel at the moment. 💐

[Hidden]

Hi, suggest you speak to / email the macular society, they have a very good helpline.

As ceri2 says, lots on here have been having inj for years.

For me its about balancing risk - will you be worse off if you don't have them? How bad are the things listed? What treatment is there for the things listed? I had about 24 lucentis and eyelea over 3 years or so and had raised iop, dry eye, sensation of something in the eye, eye pain, bleeding from inj site - all easily treated or coped with ( as opposed to losing sight without the inj). The deterioration of eyesight was immediately post inj then cleared within a day.

Of course sometimes people must get worse side effects but only you can decide for yourself if you are willing to go ahead. As your sight doesn't seem badly affected to you right now i can understand your hesitancy . But don't forget that if your eye gets worse before you go ahead with inj it may not be possible to recover that new damage. The inj are to stabilize the condition and lots of people owe their continuing sight to them. I don't think your doc would recommend them if you didn't need them ( on cost alone!).

Diagnosis is always a scary time, be kind to yourself.

Good luck going forwards x

[springcross]

Hi Eyecloud. I have wet macular degeneration in my left eye. I left mine too long to seek treatment as I thought it was something to do with dry eye - I had never even heard of wet macular degeneration. Unfortunately, as a result, I lost part of my central vision and that cannot be recovered because once the damage is done to the macula, it cannot be reversed. At the moment, you are in a reasonably good position but that can change so quickly with this problem and that wavy line could become much worse. If I could go back to before the damage was done, I would do so in a heartbeat. It's entirely up to you of course, but please don't wait too long to decide. I have sensitive eyes too but you could always have a word with the ophthalmologist as to whether this may be dry eye. If you choose to have injections, do it quickly whilst your eye is pretty good. All the best to you. x

[Eyecloud]

Thank you all for your help and support. I guess it’s obvious what I must do. Best wishes to you all. x

[MikeG1944]

Hi, I have been having the injections for around 18 months now and they do work.

Don't worry about that side effects data; it's the same with all pills as well. Drug companies have to by law publish all incidents of side effects however small and whether the side effects were due to that drug or not. In many cases the recipient may have had a variety of drugs but not able to prove which one resulted in the side effect. One on my sons used to work for a drug company and explained this to me. If you took notice of all that side effects data you'd never take another Aspirin.

[thom3patty in reply to MikeG1944]

How far apart do u get your eyelea injections

[MikeG1944 in reply to thom3patty]

Hi, until this next time I had them every 8 weeks but I am on a 12 week schedule now. That's about the norm I think, starting on 8 weeks.

[thom3patty in reply to MikeG1944]

My dr goal was to go from 6 weeks to 8 weeks then 12 but when they jumped me from 6-8 I felt a decrease in vision slightly so I have been getting every 6 weeks but I am going to ask him about going to 7 then 8 I feel having this close for so long is not helping my eyesight it is keeping swelling down but vision could b better it scares me he did mention a new injection will b released around September or October and is suppose to b taken less frequently I sure hope so eyelea kick my butt

[JJnan in reply to thom3patty]

I was told you must leave 8 weeks between inj....are you talking about Eylea?

[Painting567 in reply to JJnan]

Hi JJnan , I've been having Eylea injections in both eyes for over 4 years my right eye is stable with 8 weekly injections, my left eye stays stable with 4 weekly injections after the last injection in my left eye it was decided to try 6 weeks, but after 6 weeks there was a deterioration so it's back to 4 weeks again.... I also have cataracts in both eyes....... over the four years I've been treated with Eylea injections both eyes have fluctuated with injection dates backwards & forwards from 4 weeks to 8 weeks.

[thom3patty in reply to JJnan]

yes seems like my vision have gotten worse and I wonder if its because injections are too close (every 6 weeks)

[thom3patty in reply to JJnan]

Yes

[Tetrazzini]

I have AMD in both eyes. At 10 to 1 it seemed a fair risk to save my eyesight.

[FarmersDaugher]

Dear Eyecloud:

I, too, was diagnosed with wet AMD in my left eye just this past March. I completely understand your concern over going forward with treatment, as I was faced with suddenly having to learn everything I could about what treatments are available in order to make the best choice possible.

I live in the US and my husband is a pharmacist, so we did our research and decided on Eylea. I must agree with you that reading about the possible side effects was frightening and no one wants to experience those. But I will leave you with this bit of wisdom from my husband who responded to my concerns. He said, "If you were to read about all the possible side effects of Tylenol (acetaminophen) you'd never want to take it again." It helped me to keep it in perspective and move forward.

Further, I believe your calculation that side effects may occur in 1/10 cases my be overstated. Here is a link to a document I consulted listing side effects that were observed in clinical trials. In it you will find a clear graph that may help you in your decision-making:

rxlist.com/eylea-side-effec...

So far, I have received 4 Eylea injections. I have some wavy lines and a shadow that causes blurriness in that eye, but incredibly, my vision is still 20/20. I have had no side effects except for a pesky floater that I notice from time to time. I thank God everyday for having the ability to receive a treatment that is keeping my vision stable and I wish the same and more for you.

Kind regards!

[McNaughton]

York UK Yes.... nothing they can do about dry md..at the moment, that will march on .... wet yes.... eyelea, lucentus ,.... injections whichever, that will save your central vision. Now 76 , female and have had 104 injections in each eye ...both eyes every four weeks . do not worry about the injections, you have had worse sessions at the dentist ..... but I would advise, that you insist on diluted iodine and a dam good wash out at the end, or that could really put you in serious agony. Dark glasses are great for after..... take a couple of pain killers ... followed, in my case by a strong gin and T. Curtains drawn .. tele on ...and chill, early night, you will be right as rain in the morning. Stay positive .... ps its great, you get the sympathy vote every time, Just say you are going for eye injections and watch the reaction... you become an immediate hero .. take care..pps dont bother about training your guide dog or learning braile ..... you are not a fortune teller ...anything could happen before then...and it will be all a waste of time. Its not going to kill you.... just a dam nuisance. You will adapt .. Im off for mine on Wednesday, that makes 106. Polly xx

[Hidden in reply to McNaughton]

Hi Polly, not to try and teach you to suck eggs ( and gosh over 100 inj!!!)...but have you tried taking 2 paracetamol about an hour before inj ? Gets it into your system ready. Also, using sterile drops for dry eye every few hours post inj. Both lubricates and flushes any remaining iodine. Helped me enormously. Hylotear are good.

[McNaughton in reply to Hidden]

Yes.... would be good if I remembered 😊 I put the issue right out of my head ... until I arrive at the hospital ... even sometimes forget my sunglasses ..!! or should say I dont think about it. I have eyd drops etc . I will and try and do better.... 😀 Polly

[Rosalyn-helpline Partner]

Dear Eyecloud,

The best form of defense against wet AMD is rapid treatment. Without this, there is a danger that permanent damage could occur in the form of scarring, which unfortunately cannot be reversed.

The main form of treatment for wet AMD is the anti-VEGF injection. Treatment would not be suggested unless it was needed. It is up to the medical professionals to weigh up the risks and benefits of any treatments, taking into account previous medical history.

Usually, an initial loading dose of 3 injections is given, once a month for 3 months, then the eye is reviewed. If further injections are required, then how far apart these are administered is then determined by whether an individual is receiving Lucentis, Eylea or Avastin injections and which treatment regimen they are on:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

It is important for an individual to establish which treatment regimen they have placed on so that they know whether their treatments are late or on time and whether they need to chase them as a result.

The function of the injections for wet AMD is to suppress the abnormal blood vessels developing behind the retina, stabilise the eye, maintain vision and prevent further damage. Therefore, if the eye becomes stable for a period of time, there will be no function for the injections. However, it is possible that the wet AMD may become active again, in which case further injections would be needed. During these periods of stability, it is important to check an Amsler grid weekly. This will help gauge if there are any changes to the eye, which may indicate if more injections are needed. If any changes are identified, then it is important that the eye clinic is contacted straight away.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments:

macularsociety.org/6months

Please contact us if you would like to discuss anything further. The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Eyecloud in reply to Rosalyn-helpline]

Hi Rosalyn, Thank you for your helpful reply. I have just had a letter from the hospital and although they say I have wet amd, my vision is above the treatment threshold!! I assume you have to go half blind before they do anything? In the meantime do you have any advice on how I can look after my eyes/vision?

Thanks again

Eyecloud

[Rosalyn-helpline Partner in reply to Eyecloud]

Dear Eyecloud,

Many thanks for your reply.

Do you mean that your visual acuity in the eye with wet AMD is better than 6/12, so that your eyes are considered too good to treat i.e. outside of the NICE treatment guidelines? If so, please contact us for further information on this.

I have copied a link to information on lifestyle:

macularsociety.org/sightmat...

In addition, these are links to our booklets on Nutrition and Protecting your eyes:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

Please contact us if you would also like to receive supplier's details.

Kind regards.

[Eyecloud in reply to Rosalyn-helpline]

Thank you for your reply. I received a letter It reads 6/7.5 best corrected in both eyes. I have had pictures taken with dye, but that was after the letter was sent.

I still haven’t seen the consultant and nobody has explained anything to me!

Best Wishes.

[Rosalyn-helpline Partner in reply to Eyecloud]

Dear Eyecloud,

Yes, we have more information on the too good to treat issue which we can send you.

Kind regards.