Eyelea protocol: I sent a letter to Health... - Macular Society

Macular Society

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Eyelea protocol

ALMD profile image

I sent a letter to Health Unlocked about my injections in UK and Belgium and comparing the drugs and procedure. My consultant has modified his drugs in the hope that I will not suffer so much in UK.

The Macular Society , of which I am a long term member have not replied, yet the information could help others.

I suffered corneal damage and allergies each time in UK and know well how desperate patients can be. Andrea Rogers

14 Replies

Good Morning ALMD,

When did you send your letter? Did you address it to anyone in particular? Unfortunately due to covid - we are all working from home and can't access the office regularly.

The advice and information team usually has a team member in the office once a week, but other teams are sometimes less often.

If you let me know if/who you addressed the letter to specifically, or if it was just to "The Macular Society" I can ask the team member from our team to locate your letter when they go in this week.

All the best,

Becky

Advice and Information team :)

The letter was dealt with by you. You wrote that you were forwarding it to the research team.

Becky_MacularSociety profile image
Becky_MacularSocietyAdministrator in reply to ALMD

Good Morning ALMD,

Our research department has seen your letter. They have this report from the Royal College of Opthalmology whicvh you can read here

rcophth.ac.uk/wp-content/up...

The link above takes you to the Royal College of Ophthalmologists guidance on how to do IVTs. It includes this section:

• Single use topical anaesthetic is applied to the eye.

• The operator’s hands must be clean and surgical hand disinfection is essential. • Sterile gloves should be worn.

• Pre-injection antiseptic has been shown to be effective in preventing endophthalmitis following IVT. Povidone-iodine 5% solution should be instilled on to the ocular surface and adequate time allowed (3 minutes) prior to injection 6.

• For patients allergic to iodine alternatives such as chlorhexidine 0.1% aqueous solution may be used 7.

• The routine use of a surgical drape and/or eyelid speculum is no longer considered essential 8 but an important principle is that the eyelid margins. should always be kept away from the injection site. Disposable devices designed to facilitate intravitreal injection may be used which eliminate the need for a speculum and caliper.

• Supplemental subconjunctival anaesthetic (e.g.1ml of 1% Lignocaine [without adrenaline]) in the area of planned IVT may be considered if using a 27 gauge or wider bore needle. In a severely inflamed eyes subtenons local anaesthetic may be necessary.

Subconjunctival anaesthetic is an option in the UK and if this is something you are wanting to have, then it needs to be discussed with the eye clinic that you attend.

All the best,

Becky :)

Macular Society

Thank you. So many suffer from pain after Eyelea injections. Protocols vary in UK and Europe and we should be open to learn from practices ex UK. Medicine does not have boundaries.I would recommend subconjunctival injections as mentioned in the Royal Society Report. The overall experience is less painful for me and many friends in UK who have it.

Sorry to interupt Becky, i refuse to have the 'cape' after a bad experience, this is in my notes and consultant agrees, but still get injectors who don't like me saying it, the speculum, although some are heavy handed with it (and shouldn't be) i think is esential , but in 7 yrs i have only seen handwashing done , no hand didisfectant or sterile gloves used, and the most pain comes from injectors who don't read off the same page, i even had one who stuck the drape to front of head over my hair, removing it took hair out by roots!...and rubbing eyeball quite hard with finger and no gloves!....i have told consultant on these occasions but obviously doesn't pass it on, i can only guess they dont want to be seen as complaining as some injectors are doctors, which amazes me. I just wonder how many don't follow RCO guidliness.

What has he modified? I have been having eye injections for 10 years every month and all has been fine in the UK fir me.

ALMD profile image
ALMD in reply to tallyho

As many others report, reaction to eyelea can be very painful. My consultant changed the anaesthetic and antibiotic drugs to those used in Belgium. I would recommend subconjunctival injections as mentioned in the Royal College report. We can learn from other countries and many English people on holiday or resident abroad have their injections ex UK. Their contribution might be apposite. There is no place for insularity in medicine.

IvyRose2 profile image
IvyRose2 in reply to tallyho

And me, no problems and it’s working.

Interested as to what the antibiotic they recommend is. I have had Eylea MONTHLY now for over 5 years and had no issues at all but interested in what the changes have been. Nob sure what anesthetic they use it works fine for me. Is it not the iodine people find difficult to tolerate ?

Also like to point out how much research is done in the UK I would say it is far far far from insularity. I myself am involved in a lot of research as I am an expert patient and know how much is going on

ALMD profile image
ALMD in reply to tallyho

I steer 2 clinical trials, do peer reviews and am a nedical lawyer. Novartis , Bayer and Pfizer are all European based.

tallyho profile image
tallyho in reply to ALMD

Not sure what you are trying to say here. I am not gonna boast of what I am involved in but I am quite rightly justified in knowing what is happening in the the UK itself 😊 also not sure what a ‘nedical’ lawyer is sounds interesting. All the best to you.

Is this problem just with the Eyelea drug? I've been having regular injections of Lucentis for 5 years. Pain; varies with whoever is administering the injection but generally no problems. Because I had a couple of really painful injections in the early days of my treatment I mentioned it to the Opthalmologist who recommended I have a stronger anaesthetic & wrote this in my case notes this is in my notes for reference of future injectors. We all have different pain thresholds. I don't always get the same nurse doing my injection but there is one in particular who is extra careful & always tells me to take a deep breath when she is about to give the injection, and then to breath out slowly - I find this very helpful & it works.

I had Lucentis for a couple of years and then was changed to Eylea. I have not had any painful injections since changing, I just ask them to be liberal with the anaesthetic!

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