Excruciating pain immediately after eylea injections - no betadyne

[jenfrommem]

Nearly a year of Avastin injections and two years of Eylea injections, no betadyne being used the last two years because I could not tolerate. Now (the last 4 inections) I have excruciating eye pain after the injection and last time a few minutes of no vision at all in the eye.

I take Tylenol immediately and the pain goes away after a few minutes, but it is excruciating, incapacitating, and terrifying. I know my eye pressure is high (20 or 21) when they test it before the injection. My doctor is not alarmed by any of this, but I am and also now have uncontrollable trembling when I have the injection, I cannot control it no matter how hard I try to relax. No wonder!

I have been having the injections every 8 or 9 weeks. My vision is not that bad because my AMD was caught early due to imaging before cataract surgery and my vision has remained pretty much unchanged over the entire 3 years. No better, but not much worse.

I don't want to go blind, but the injections have become a major ordeal, and I don't think I can continue. Anyone else? The other posts that I have seen seem to be betadyne issues, but no betadyne being used with me. This is an entirely different type of pain.

[thom3patty]

I have found when this one dr gives the injections he overfills the needle with eyelea and that pain is severe for about 30-40 minutes then when I have another dr he doesn’t overfil and the pain is bearable also second dr holds my eye open doesn’t put anything in it to keep it open he feels less trauma the better his shots r by far the easiest and I always get extra numbing and a heavy wash after hope this helps

[Hidden in reply to thom3patty]

I was under the impression that the Eylea dose is fixed at 0.04Ml. So far as I know this drug does not come in a bulk pack to be split down. Any such loading of the syringe would be prepared by the pharmacy.

I am puzzled.

[thom3patty in reply to Hidden]

Me too now! All I know is the one time I was explaining to the one dr that when the other gives it I can feel pain all the way to back of my head to the point I would get physically sick it was so bad and he said he must over fill your syringe he said he would put the exact amount in required so I have no idea if they were just saying that or not

[Lizleiper in reply to thom3patty]

Please read my reply to Jenfrommen above . I am quite sure this will help you with your eye pain x

[tallyho]

I am wondering if you have got dry eyes as this can make injections very very painful. I now have a vial of lubricating ointment I put in my eye before hand and it really really helps.

[123charl]

Good morning

I'm sorry to hear of your plight with the injections but pleased it is holding up your vision.

I had many injections, there was no improvement and my vision just deteriorated. I have a fantastic consultant and he gave me a 4 month lasting steroid implant which didn't improve

the deterioration. After four months he gave me another and there was a big improvement. He then administered a steroid implant which lasts upto 3 years - I am over twelve months on and all is fine. You are now obviously petrified of the injection procedure - and I do understand. As the injections are working for you, I would highly recommend that you have a word with your GP and consultant about having a three year implant. The procedure is not as obtrusive as the injections and you could greatly benefit from having this.

Good luck and best wishes

[thom3patty in reply to 123charl]

What is the name of your implant

[Hidden in reply to 123charl]

I am intrigued by the steroid implant lasting 12months. The commonest one is Ozurdex which lasts up to 6 months. Sadly, it has the effect of inducing cataract and has a high risk of glaucoma. Fortunately, both are generally treatable

[Painting567]

You have my deepest sympathy , I've previously said how painful I find these injections, on impact of the needle I feel exscrutiating pain ,it's now nearly 5 years I have endured this horrendous treatment! my right eye with 8 weekly is stable my left eye after 4 weekly injections starts to improve, but if the injections are given more than 4 weeks it reverts back to having fluid behind the retina, I als have cataracts in both eyes, it has been discussed that I could have my cataract removed on my right eye because the MD is stable, but that eye has the best sight , so I've refused...... my quest is to find the answer to alleviate these unbearable injections.... my Consultant is beyond doubt the kindest considerate person, & has tried everything possible, all to no avail ,I've had two previous Consultants injecting & two other injectors all of whom tried to alleviate this painful experience all unsuccessfully..... my current Consultant now always does my injections personally .

[Hidden in reply to Painting567]

Painting 567, have they tried giving you anaesthetic drops then an anaesthetic injection before the antivegf inj?

That's what I get before ozurdex and doesn't hurt like my antivegf inj used to even though it's a bigger procedure.

[ANO_Health in reply to Hidden]

Yes, Hidden and Painting, this has been my experience too, of excruciating pain as the needle enters the eye. My caring ophthalmologist has tried many things, and we have found having numbing drops then local anesthetic injection, works really well. He is concerned that it does mean more small 'pokes' in the eye so more risk of infection, but we talked about it and between us decided that is the way to go. I barely feel the local at all and certainly not painful, and I don't have the build up of anxiety before injections now, and less discomfort in the hours afterwards.

He has also changed from Eylea (14 injections) to Vabysmo (2 injections) and my diabetic retinopathy is responding by improving and lasting weeks longer between injections.

[Hidden]

It is an outside chance but it is possible you might be allergic to the anaesthetic. Most hospitals will have at least 2 available so, it might be worth asking for a different one to be used.

[RosMacularSociety Partner]

Dear Jenfrommem,

Please contact us for discussion.

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

Kind regards,

[Lizleiper]

So sorry to hear about your problem and I too sympathise with you .

For those people who have never suffered from this debilitating pain , let me tell you it is exactly as jenafromem has described ! It has nothing to do with dry eye syndrome or the iodine used . No eye ointment or eye drops has any effect ! Believe me I know of nothing that helps the pain we are talking about ,except anaesthetic eye drops , which I received at accident and emergency at 11 pm having suffered thus pain about 2 hours after injection ! I had the injection at 2 pm that day . I was given the strongest painkiller they could me in hospital with no success whatsoever! Anaesthetic drops were administered as a last resort , but the only thing that worked . Not advised at eye clinic .

On a lighter note my problem , after 3 episodes like this , Has been solved . In my case it was the administering of the clamp which keeps the eye open ., each time the clamp was put in ,it scored the surface of my eye . Since my last episode I have had a lady consultant who does my injection . May I say the way she puts the clamp into my eye is different to anyone else doing it . I have now had 5 Injecti

Ions with her and have had no adverse reaction since !

So I say to Jena stick with it but make sure you have it looked into it . The injections are well worth it ! I have had approx. 30 injections and always with eyelea. I look forward to having the infections now .

If I were you I would show my entry to your consultant .

Please do not stop injections Jenna . My eyesight is wonderful Now . I do feel for you Jenna . Keep talking to the consultant and get him do do the injection for you . Often it is simply the person administering the injection which is the cause of the problem . Just remember you can ask for a certain person to do this procedure .

You are not alone ! Please keep going ! x

[thom3patty in reply to Lizleiper]

One of the new eye dr doesn’t use any clamp at all he comes in and I am numb already and he is in and out in 2-3 minutes my excruciating pain is not the injection it is about a minute after and lasts up to an hour many times I actually get sick from the pain no amount of Advil or cataflam help I can’t take prescription pain meds because they also make me sick I agree it’s not the beta done like I previously thought because they use limited amount and then do a heavy wash these injections r horrible I think it’s what’s in the eyelea

[jenfrommem]

Thanks to those who replied. In addition to the pain, I started losing vision immediately after each injection as well - for only a few minutes, but still! The doctor finally capitulated and said he could reduce the amount of eyelea injected slightly - he puts in a little less. Now no more pain immediately afterwards nor loss of vision. I asked him if pressure could be the problem - the injections increase your eye pressure - last year and he shrugged it off, but now says that was the problem. I know he would prefer to give me the full amount of eyelea, but I was about to start skipping injections and insisted.

[Hidden in reply to jenfrommem]

Well done for advocating for yourself. Glad things have improved.