First Eylea injection for wet AMD and my e... - Macular Society

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First Eylea injection for wet AMD and my eye was so read afterwards and did hurt!

43 Replies

Really red eye and kind of blooddot in my eye is this normal after first Eylea injection? Or is this due to the ophthalmologist and the way she does it?

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43 Replies
Koalajane profile image
Koalajane

My injection is usually done by a nurse practitioner. I have Lucentis injections and have never had a red eye after or a blood dot. I have had about 15 injections so far and have discovered that different injectors do it slightly differently. I have only once had it done by a male doctor and he was not very talkative so didn’t explain what was happening, it was a painful injection and my eye was very gritty afterwards. I hope your eye starts to feel better soon

in reply to Koalajane

Thank you so much for your reply! Makes me wonder if I should change ophthalmologist. I never had an eye problem before so have no clue who is good and who is not. But I appreciate your reply! My next one is on March 18 and then I'll see how this goes.

Bunny1756 profile image
Bunny1756 in reply to

Greetings, Zanthorea,

I just had my first injection of Eylea. You can read my posts and my experience with this ordeal over quite a while. I have learned a great deal from all the amazing people here who convinced me to do this. I searched and researched opthamologists for months to find the most qualified doctor/eye surgeon I could find. I trust him completely; otherwise, I would never let him touch me. Yet even with all this, I was so frightened, it was paralyzing me. It sounds to me like the individual who gave you the injection hit a blood vessel, vein, or capillary. I am not sure it is always possible to avoid this. On the other hand, if this were me, I would find another doctor. I would never in a million years trust a nurse practitioner or inexperienced doctor to do this. I have to have a first injection into the other eye on Wednesday morning. May we all benefit from these treatments.

Bunny1756

Koalajane profile image
Koalajane in reply to Bunny1756

The nurse practitioner who injects my eye is very experienced and I completely trust her. She is fantastic and very calming and very accurate. I worry more if it is a male doctor who is doing it as they often do not talk much and explain what they are doing.

in reply to Koalajane

Funny enough I also have a bit of an issue with male specialists that is why I got a referral to the female ophthalmologist. I do have to say that she didn't talk much but it was a very busy day at her surgery and I did put it down to that.

Bunny1756 profile image
Bunny1756 in reply to Koalajane

Hi Koakajane,

That is wonderful if you have a competent nurse practitioner who can handle your treatment. Not around here!

Take care,

Bunny

in reply to Bunny1756

Thank you so much for your reply. It was a female ophthalmologist who did it and she was recommended but of course now I am unsure. I will have a talk with the Eylea person tomorrow morning as I joined SmartSight. I will then see how to proceed. Good luck with your injection. My thoughts ar with you!

Bunny1756 profile image
Bunny1756 in reply to

Zanthorea,

What is SmartSight?

Thank you,

Bunny1756

in reply to Bunny1756

I got a booklet from Bayer who must be the manufacturer of the Eylea treatment. In there you can join the SmartSight support program. Tomorrow I will get a phone call and they will answer questions regarding this treatment.

in reply to

That's interesting !

I just googled Smartsight and found a pdf file about an American Academy of Ophthalmology initiative.

It gives a link to visionaware.org and within that site under Support is a directory of services across the US. (In that directory

Bunny, there is a NJ Vision loss Alliance group.)

Zanthorea, dont know if the Bayer program is part of the same initiative or not but the tel helpline sounds great!

Let us know how you get on with it, if you search TwasBrillig ' posts you'll find some "Useful Stuff " one of which is about sources of help, if you could add to that thread info on what you've had from Bayer that would be helpful to many folk. We're trying to get those posts pinned to the forum header so easy to find.....

Bunny1756 profile image
Bunny1756 in reply to

Zapthorea,

The Eylea medication is manufactured by Regeneron, not Bayer.

Bunny

in reply to Bunny1756

Funny that on my brochure I got from the eye clinic it says Bayer.

in reply to

But you are right. Outside the United States it is Bayer who has the marketing rights for this medication. So confusing.

Bunny1756 profile image
Bunny1756 in reply to

Zanthorea,

“Marketing rights” does not mean the same thing as manufacturer. The Eylea medication was created and is only made by Regeneron.

Take care,

Bunny

in reply to Bunny1756

Yes I know. Basically nothing to do with manufacturing. Sorry about the wrong message. Have a good day I hope.

bel9mex profile image
bel9mex in reply to

Sorry, am unable to work out how/where to thread (new here). But, from personal experience, it makes absolutely NO difference if person injecting is male or female! Have had 40 injection over 7 years in right eye, so have a bit of experience there. Sadly, right eye was doing ever so well but then went rogue about 18 months ago so have now lost most of the vision and nothing more can be done. Left eye, caught earlier, had about 20 injections and has now been stable for about 4 years (it is now my saving grace!). All this to say that I am convinced that it is the way the doctor/whoever does the injection. I had the most horrid reactions to my first 5 injections 7 years ago (gritty eyes, swollen eyelids), done by a female doctor! I knew nothing else as I was new to this injection bit! Then had another doctor (female) = great. No bad reaction afterwards. Over the years, had mostly the same female doctor but also another female doctor and also a male doctor. Again, no bad reaction, aside from the usual feeling that, after the local anaesthetic has worn off, you feel like someone has punched you in the eye. I've had my eye washed/not washed, iodine used/not used... I guess everyone's experience is different, obviously, but this bit about choosing a female doctor over a male doctor is ludicrous, sorry. I still am convinced that it how the injection is done, not who does it.

in reply to bel9mex

I am so sorry about your eye. Do you cope okay without much vision there and don't you worry the other eye could suddenly get bad. I am still quite terrified about it all as I am new to this disease!

bel9mex profile image
bel9mex in reply to

You are so sweet to worry about me. To be honest, I am ever so grateful that the vision in my right eye was saved for an extra 7 years and it was working... who knows why my eye suddenly decided to "go rogue"... On the other hand, left eye was caught early (started as dry, then went to wet), so maybe that's why it is doing rather well (though far from perfect). Yes, I do worry about losing sight in left eye but I remain optimistic as early treatment has proved so beneficial and I might never lose the sight in that eye! Think positive.

in reply to bel9mex

Thank you so much. I need to boost my positive thinking as I am feeling so down about it all. Have a peaceful day.

in reply to

Hi zanthorea, dont know if I've already said this but sight problems are known to be akin to bereavement emotionally so be kind to yourself x expect to feel down, it's natural . I cried myself to sleep every night the first 2 weeks!

Cry when you need but then start to put in perspective. Dont spoil whatever time you have on this planet with wasted emotion. Wont make anything better but might make things worse - too much stress is very bad for us.

I can recommend cognitive behavioural therapy (cbt) also neuro linguistic programming (nlp). Getting out in nature, being physical, helping others, all aid our own mental health.

My favourite quote: 'there is no way to happiness, happiness is the way'.

in reply to

Thank you! Yes I need to stay strong and positive. I am so glad to know that you were crying a lot too when diagnosed. I do try my best to accept this new challenge.

in reply to

Sending you a big hug X

I'm 6 years into my journey and still cry sometimes! Let the tears flow, the chemical processes of your body produce them to aid you in emotional times. Just dont drown x

Dont let the worry of an unknown tomorrow spoil the potential of a beautiful today x

bel9mex profile image
bel9mex in reply to

I agree with eyesright when mentioning that sight problems are akin to bereavement although, to be honest, I don't know what stage you are actually at. Perhaps the best medicine is to know that you are not alone, that there is help (including the dreaded injections, which are not that bad in the long run), and that accepting the situation and concentrating on the positives will make the future a whole lot brighter (and easier). Think positive, okay?

in reply to bel9mex

Thank you to you too. Never really heard about this disease before so it does give a certain level of comfort to know I am not alone!

MsDirecto profile image
MsDirecto in reply to bel9mex

I completely agree that it's about the technique of the injector. I have had 4 doctors in 10 years. They represent 4 different techniques and expppperiencess - 3 of them good.

My first injection was in 2010, and it was Avastin. We leaned that I needed extra layers of numbing gel to be completely effective. So it took LOTS of eye washing to rinse out the gel and the betadine. I always had new bottle to continue flusing at home.Eye didn't hurt from injection - it was just raw and sensitive from medications and eye flushing.I had injections every month for 2 years.

I moved to my current state in 2012 and hadthe doctor recommended by original. He was absolutely wonderful. He was gentle, easy-going (in his 70's), head of the retinal society for the state and lectured internationally. I had complete confidence in him and I always enjoyed learning about his frequent participation in clinical trials.

He did not use a gel: he used a needle the size of a human hair to inject numbing agent into lower eyelid. My affected eye was the left . As he was about to do the injection he always said "Look down and to the right" , and I could not talk, to keep from aerosoing bacteria. Never ever any pain from injection. There was the usual feeling of dry eye and occasional floater, and I found I always felt a bit "out of it" when I got home in the afternoon. (Others have told me they experience the same thing.) He switched me to Lucentis and I did well. Then he switched to Eyelea because he said it was shown to last longer in some people. It did with me: I went at least 2 years without needing an injection, and had only a about 2 or 3 a year before that.

Sadly, he died just before Christmas 2019. The doctor who took over the practice has been the one running the clinical trials.He is younger ( late 40's) and his technique is rough.

A couple of things happened between November and January: I was under a lot of stress organizing an event fin my community for Christmas. I was having an awful time seeing the full computer screen, and I got a stiff neck trying to turn my head to see the middle of the screen I checked the Amsler grid (always up on bathroom wall), and there it was: wet AMD had now appeared in right eye. I started going to this younger doctor for my first injection in right eye. He asked if I would be willing to participate in a clinical trial. There would be 2 drugs involved: Lucentis and Avastin. (It was supposed to be a blinded/ "masked"study, but I figured it out when reading the protocols. ) IThe study was to help determine how often a person needed the injection. I He continued to give my Lucentis in my left eye.

In January I developed an autoimmune disease called Giant Cell Arteritis. Caused by inflammation of temporal artery that leads to the eye, and untreated, can cause blindness. I lost some peripheral vision in my right eye.Treatment is oral prednisone for a long time. It has nasty side effects but it's the only thing that stops progression of blindness. It did not interfere with clinical /trial.treatment ofAMD. Dr always seems rushed, because he is seeing regular patient s and clinical trial patients. I had to ask him once to allow a little time between the numbing injection and the treatment. I feel I have now become a trial specimen instead of his patient. He forgets that I have GCA and even questions the rheumatologist's diagnosis. (Rheumatologist has 45 years experience and my internal medicine doctor agrees.)

The GOOD part of this is that there is a studydoctor who now does the injection in my right eye, so that she does not know which drug is being injected. She has a totally different approach: She puts in layers of very heavy gel- almost like vaseline. I was worried that this would require massive amount of eye wash to clear out. Not so. She did the injection right through the gel. The I closed my eyes and she very gently wiped away whatever gel was leaking out. No betadine. No eye rinse: she said that rinsing/flushing causes dry eye. I was an amazing experience.

Both eyes are responding very well to injections: original eye (L) shows no exudate. New eye has very little - caught it soon enough. The GCA is a problem, but that won't go away. Except for the GCA, I can see quite well without glasses except for reading. (I am 77).

Naturally I was fearful before the first injection. I have learned to take slow breath in and then out during the injection, and then it is over. As I do that breath, I am saying under my breath, "Thank you": Thank your for whoever developed this cancer drug and the allowed it to to be used for AMD. Thank for the training and skill of the person ndoing the injection. Thank you that I have the insurance to pay for it.

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear zanthorea,

Individuals do report a level of discomfort after an injection, but this should not be described as pain.

I am copying a link to our factsheet on Pain after injections:

macularsociety.org/sites/de...

It may be worth contacting your ophthalmologist via their secretary and using this information as a discussion point. If the source of the pain can be identified in advance of your next injection, then this can be guarded against the next time.

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

Thank you so much for the fact sheet. I will take it with me to my next appointment. In my case it is the ophthalmologist who does the injections. Kind regards Madeleine

Rosalyn-helpline profile image
Rosalyn-helplinePartner in reply to

Dear zanthorea,

It may be best to ring the ophthalmologist in advance of your next appointment in case, if applicable, they need to organise putting any measures in place to guard against this happening again.

Kind regards.

in reply to Rosalyn-helpline

Yes that is a good idea! Thank you for the tip!

Bunny1756 profile image
Bunny1756 in reply to Rosalyn-helpline

Rosalyn,

Thank you for the article. However, I do not know who write it. Perhaps that person never experienced an injection procedure. Believe me, it is indeed, pain.

Bunny1756

Rosalyn-helpline profile image
Rosalyn-helplinePartner in reply to Bunny1756

Dear Bunny1756,

I'm sorry to read that. If the injection procedure can be described as painful then it needs to be reported to the eye clinic to try and establish the reason for it.

All of our patient information is checked by our professional panel which includes ophthalmologists (retinal specialists), research specialists and nurse consultants.

Kind regards.

Bunny1756 profile image
Bunny1756 in reply to Rosalyn-helpline

Hi Rosalind,

Thank you for your note. The injection itself I did not feel. Following the injection, I began having thus uncomfortable feeli ng like a small stone was in my eye. That lasted about a day and a half. As that faded away, i5 was replaced by a bryise-like eye pain which went on for about five days. This felt like eye muscle pain, every time my eye moved and especially to the right, where the needle went in. Reporting this is not going to stop it. There is nothing anyone can do. The only thing that is going to stop it, is if needle injections into eyes stops, once and for all. It is time to DROP THE NEEDLE.

Bunny1756

in reply to Bunny1756

I am so sorry for this to happen. But you described it really well as I had the same eye pain when I moved the eye a certain way usually looking down. This lasted around 1 week and soon the 2nd injection is on its way. I agree wish there would be another way to treat this condition and I sincerely hope this will happen sooner than later. Hope you feel better! Thinking of you!

Bunny1756 profile image
Bunny1756 in reply to

Zanthorea ,

I just returned from the doctor...second injection...first one in the left eye. Once again, done with absolutely no pain. Amazing! But here is the wonderful news....my right eye is better and it has only been a week!

I am so happy I listened to everyone here!

Gratefully,

Bunny (:3

in reply to Bunny1756

So glad everything went well! Gives me some hope for the next injection!

Maryvic profile image
Maryvic in reply to Rosalyn-helpline

Just have to say that “discomfort” following an injection is too mild a description for my experience following the eye shot...for many years! It was definitely pain! Finally took a selfie in to show the Doc. Because of this site I understood why my reaction was so strong and what/how to request a better procedure following the shot. It is now more of a “discomfort”. 🌷

Hi, it's not usual but can happen. They may hit a blood vessel as those can't be seen. Its happened to me a few times ( check my old posts for scary pic lol) and does cause discomfort.

The redness might also be from the iodine used to clean eye. Next time tell them and ask for a thorough wash out.

Sterile soothing drops for dry eyes will likely ease the discomfort if used regularly.

Always best to ring eye clinic though for their advice, especially as it's your 1st inj and you've got nothing to compare it with.

Best wishes going forwards.

in reply to

Thank you so much for your message. I did go back to the eye clinic as they were concerned it could be an infection but fortunately everything was okay. I will tell the ophthalmologist next time about the problem. It is so good to be able to talk about it as people without this problem have no clue.

kevinaki profile image
kevinaki

It's all about the skill & technique of the injector.

A good injector will cause you no pain or problems during & after the injection.

Jihm profile image
Jihm

I have had very many eye injections - all given to me by a male doctor(USA).

He is excellent at giving shots. Once in a while I will have a bit of a blood shot eye afterwards, but not often. There are very small blood vessels within the eye that the needle can inadvertently hit by random chance. It usually takes a few minutes after a shot before my eye is seeing normally, as normally as that eye sees that is. Sometimes there is a little pain after a shot, more often just a minute of cloudy vision and "floaters", which are really bits of the medication. That all goes away after several minutes to an hour. No two shots are exactly the same. Make sure you get a really good eye rinse after each shot. It is the pain-deadening stuff they put in the eye that can make it hurt, if you don't have it rinsed out well. Always ask for an extra rinse.

in reply to Jihm

Thank you so much Jihm for the encouraging words. Will ask for a special rinse next time. There is no way around it unfortunately!

princess1931 profile image
princess1931

My first injection caused me so muchn pain I was climbing the walls!I was seen 5 days later and told I had an eye infection. This, it seems can happen so maybe that is what is wrong. I have never heard of bloodshot eye being normal, so please do get some attention in case it is infection. Hope all goers well for you

in reply to princess1931

Yes I heard of this infection and did go back to see the clinic and they checked it out. It was all okay. But thank you for the tip!

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