When I was diagnosed with Macular Oedema at a very overdue ophthalmology appointment I was told I would start a course of 5 four-weekly Eylea injections in two week. In fact it was four weeks before my first injection and another six weeks till the second despite chasing up and getting "You are on the waiting list". By now I should have had three injections not two!
How important is the timing of the injections?
P.S. The second injection was as painful as the first.
I also receive eylea injections. I started off getting them every 4 weeks one in each eye. Out of all of the injections I have received eylea r the most painful not the shot itself but the aftermath I now have worked up to 12 weeks apart but this has taken several years to get to this point what helps the pain is I get a very heavy eye wash after injection ( by the dr office) then I get extra pain gel right before I leave office sure hope you get some regularity to your injections because that is what’s going to help any swelling or bleeding take care
I’m sorry to hear you are having painful injections. I have Eyelea injections and the anesthetic never works, jab always hurts and eye sore afterwards. I hate it and only have the jabs to keep my sight as long as poss. It’s usually three loading injections, four weeks apart as far as I can remember (been having them a long time now). I can only surmise your clinic is overwhelmed with patients, which is causing the delays. Best wishes to you.
Hello, I have been having Eyelea injections for a few years now, the time in between is about 7 to 8 weeks, the consultant works out how long between injections which of course varies from one person to the other. Certainly I do not experience severe pain, the worst part is the washing out of the eye afterwards, but apart from that my eye is back to normal after a few hours. Good luck and best wishes.
Hi, as others have said, there’s usually 3 injections 4 weeks apart then a check up to see how they are working. Mine are now 6 or 7 weeks apart and apart from discomfort for 24 hours afterwards I have been fine. I do ask for the pink stuff instead of iodine & a washout afterwards does help. Some people are better than others administering the injection so I try to have mine on the same day of the week because the lady who does it is very good with minimal discomfort. I have a block of about six injections with check ups after the last one & my consultant discusses with me how we should progress with the next batch.
I feel really sorry for the people who find the injections uncomfortable. I have never felt any pain but always make sure I have plenty of anaesthetic. My injections are now at 12 weeks. It's taken a year to get to this point and I accept if the fluid returns, they will shorten the time again.
I am amazed at the different experiences we have in getting treatment. To look at different points. I had excruciatingly painful injections and very painful after effects. The first was helped by injection of novAcain (or similar) prior to the jag, it essential that a lapse of five minutes was allowed after the aneAsthetic jag for it to take effect. After a long battle it was accepted I am allergic to iodine. I get An alternative now And do not have the awful discomfort for 24 hours afterwards. All this because I have a lovely young woman consultant who actually LISTENED to me. Unfortunately, she was on holiday when last jag due. He ignored all the stuff we had worked out. I had a painful jag with a bad bleed afterwards. He changed my appointment rota which is disastrous for my travel Arrangements based on my children having to come And stY in order to take me. If I insist on getting my (junior) consultAnt back I don’t want to cause a problem between her and her head of dept who was originally my named consultAnt. Hope suggestions re managing pain are helpful and welcome suggestions re handling departmental politics. Also refer you to the SAn Paulo institute in Mexico who’s in depth surveys show 6% of eye injection patients have pain levels between 6/10. So we might be a small minority but our pain is significant and, personally, can be traumatising.
How I identify with the post injection pain, due- (found out eventually)- to IODINE. I now have diluted iodine which works fine.
Also identify with appointments being weeks "late". i.e. should have had one in a month's time; anything less than 6 weeks is a triumph. Why is ophthalmology the "Cinderella" of the medical world? xx
I am in the US. I get Eylea inj's in both eyes. The shots are somewhat painful. The iodine can make my eyes burn for a couple days. But this does not always happen. I would suggest, in addition to asking for a double rinse, not to squeeze your eyes shut tight; just close them gently when the wipe with iodine is being applied. I have found that external wipe is where the most iodine is being used. As for the drops in the eye, one can ask for fewer, or more diluted drops of iodine. It seems to be up to the tech to decide at the crowded facility where I get my shots. The worst part of my experience is that the facility is 2 hours each way from where I live, and theappointment itself can easily take 3 hours - most of that time spent just waiting, sometimes alone in rooms. When you hear, "The doctor will be in shortly", you know it is a lie.
Hi Michael, I see you are in the UK. I get injections (Eylea) in both eyes and have now had over 40. I am sorry to hear your injections have been painful. A few of mine have been painful also but on the whole I experience many hours of irritation after the injection - as if something was in your eye. I have also had the cornea scraped on one occasion whilst the clip was being removed - very painful for 10 days.Regarding the frequency of your injections I was also promised series of injections at certain times but unfortunately it never happened.
I would advise you to push for your appointments - it is your sight. Do not be put off by being told there are others waiting too! You are fighting to retain as much of your sight as you can. Bring out all the stops - your diabetes, heart and other problems. Others only have eye problems. You have a lot on your plate. I suffer a blood cancer and spinal stenosis which makes walking difficult and painful and I do push for getting my injections as I feel I have a lot to put up with and need my sight. One of the Macular Society workers told me to advocate for myself and push for the appointments.
There are waiting lists at the eye clinics and because of covid they have to see fewer patients to make it safe. Take care and good luck
Thank you for all those who have taken their time to reply. It does seem important to get them done at the four weekly interval initially. My initial course is five injections instead of the usual three because of lifelong diabetes. ☹️
Hi, I have diabetes too, diagnosed in 1989, how are you coping with everything. and what type of diabetes do you have, I'm Type 1 ?
Michael, sorry to hear about the painful eye injections. I’ve been having injections for wet AMD for over ten years and think that I’m lucky to be treated at the Western Eye Hospital on the Euston-Marylebone Road in London. Here’s how the process works there:
Soon after you arrive for your appointment your eye pressures are checked, then you have a sight test to check your “best corrected” visual acuity, including using a pinhole.
Next you have dilating drops and a retinal scan and then you see a doctor who examines your eyes and discusses the scans with you, showing you where the fluid is and comparing it with the previous scans, generally four to six weeks apart.
If an injection is recommended, you then receive anaesthetic eye drops three times, at intervals of around 5-10 minutes. You then go in to the injection room.
There you are prepped and more anaesthetic drops are given, together with iodine drops (as long as you aren’t allergic to iodine). The eyelid is then clipped open. You shouldn’t find that at all painful. If it is, ask for more anaesthetic.
When the doctor is ready you are told to look in a particular direction and keep your eye still. The doctor then selects the injection site and marks it on your eye. You feel some pressure but no pain. The injection is then given quite quickly. Again you should feel pressure but no pain. You see the fluid swirl into the eye and your vision will be cloudy, but you should be able to see how many fingers the doctor is holding up in front of you!
Then it’s just the clean up. Some doctors use a lot of saline wash to clear out the iodine, which is an irritant, but others don’t.
For 24 hours the eye may feel uncomfortable but not really painful. To me, it sometimes feels as if I have grit in my eye and I use the “Viscotears” gel drops to relieve the symptoms, but often I don’t need to use them.
My worst recent experience was when a new doctor used a great deal of saline wash and my eye felt uncomfortable for 36 hours, but that’s unusual.
I have had injections of all the drugs used for AMD: Lucentis, Avastin and Eyelea. Of the three, my experience after more than 40 injections is that Eyelea was the least effective. At present I’m having Lucentis in the left eye and Avastin in the right eye, for reasons that only NICE can explain!
Sorry about the long post, but I hope that it may help you to spot any procedural differences, because the injections shouldn’t be painful (although some doctors are better at doing the injecting than others!).
Best wishes,
Paul
PS. If you want to ask any follow up questions I’d be happy to help.
Hi engineer. What a useful and accurate description of a good procedure with minimal discomfort. Especially interested that you found eylea the least effective. I was switched on to that. Finding different docs come up with differing treatment plans re frequency of injections (I have both eyes injected) for each eye. Very confusing. It really helps to have one person that you have some continuous relationship with. I have had some excruciating jags which really stressed me re treatment. Did not have your experience of getting numbing drops repeated three times. Sounds like you have a great department.
My experience of Eyelea injections is somewhat the same as yours. I am in East Yorkshire, It is usually sore for a few hours just like grit in the eye, it is an injection after all, but I was told to always start a new tube of Viscotears as it’s sterile and to rest with a cooling pad over over the top of my face until things settle. It usually “pains” for the rest of the day, but usually back to normal the next. I usually have them every 8 weeks, but if I don’t get an appointment then I ring and ask if I have an appointment due and they check and say that it’s on its way, but to always ring if I’m concerned.
Hi there sorry to hear of your issues getting the injections. Ideally the loading injections of which you can have 3-5 should be 4 weeks apart but since Eylea can last up to 8 weeks for some if their is a delay it would be more tolerable than Avastin for example. I am sure there is a backlog of patients to be seen and staff off due to Covid May also be affecting your hosl. I have just had my 96 th injection in my right eye and 9/10 times there has never been an issue for me maybe you gave an issue with the iodine I know it’s well reported that some do it would be good to mention this next time. Could you phone the consultants secretary or the clinic again, it maybe that your OCT has already shown improvement hence the wait. I wish you well. Btw injections really should not be really painful either even after anesthetic has worn off if it is then either nit enough anesthetic given or perhaps an allergy to iodine or even an issue with dry eyes which I had but now had punctual plugs inserted which have really helped.
Hi Michael. I really think you should chase the eye clinic about these appointments, it really is important that initially at least, you are given them at four-weekly intervals as loading doses at least for the first three doses (five in your case as you have been told), that’s what I was told when I began having the injections and I know that many others have been told the same. After that, it will depend on what the OCT scans reveal as to when your next injection should be and that will be discussed with you after the scan.
Regarding the time in between, you could try ringing the appointments number and explain that you’ve been told your appointments should be closer together for the first five injections and if necessary, ask if there are any cancellations nearer to the four weeks. I think areas have a lot to do with it, some areas seem to be able to give regular appointments but others seem to have to wait much longer – probably due to how many patients they have! You really do have to be your own advocate, as someone has already said and it’s very true in some areas unfortunately. You could mention it to the optometrist you see after the scan (prior to the injection) and tell him/her your concerns.
As for the painful injections, is it painful when the needle goes in and if so, ask for more anaesthetic drops when you first go into the injection room. If it’s afterwards, then I agree with the comments from everyone on here that it’s probably the iodine. I get awful problems with it myself and whilst some of them use the little vials of iodine prior to injection, there are a couple of injectors who like to drop iodine from the cleaning swab into my eye prior to cleaning – it’s this iodine that causes me such discomfort. If that’s the case, then ask for it to be thoroughly flushed from your eye after the injection or to use something else to cleanse your eye with.
Good luck, I really hope you manage to get your appointments sorted. 🤞x
I now have an ophthalmology appointment for the end of the week after chasing up. It will be 5 weeks 2 days since the previous one. I wonder what the gap would be if one didn't chase them!?
Yes, exactly but good for you for doing so. Don't forget to tell them how painful the injections were and ask for more anaesthetic drops prior to injection (if you feel that's what is needed). Good luck. 🤞
Hi, I had my very first anti VEGF eye injection today and my next appointment is in a months time. I hope someone will be able to help you with your question. Good luck.
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