Eyelea loading dose complete

Hi all, my loading dose of eyelea is now complete as of last week. Waiting on review now at the end of April. Fingers crossed!

After two bad post inj reactions I asked for extra rinsing on the 3rd. There was a bit of waffle essentially playing it down but I quietly insisted and then they took me seriously. They put in the whole of the antibiotic drops bottle then two mini bottles of lubricating drops and injector told me there was "nothing yellow coming out of the eye now". - it made a huge difference and I got a good night's sleep for once.

I told them my first few Lucentis had hurt after but then got ok so why bad again with eyelea? They said eye can get used to the iodine then arbitrarily decide it doesn't like it again!

Don't know why exactly but I've been nervous again with these inj after having settled down with the others. Hey ho, keep breathing lol .

Good luck to us all x

[RosMacularSociety Partner]

Dear eyesright.

I am copying the link to our leaflet on Pain in the eye following injections:

macularsociety.org/sites/de...

This may be useful as a conversation point with your ophthalmologist.

Please do not hesitate to contact us if we can be of any further help. The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

[malp1947]

I hope that all goes well. I had my second loading dose last week at Watford General. I cannot praise the staff enough.

I was very nervous about the treatment, but my fears were soon allayed. The actual injection stung slightly, but the pain soon went. The most disconcerting aspect was the blurred vision in my left eye. This lasted for a couple of hour and was not very pleasant when travelling on public transport.

The second injection was just so painless. OK I had blurred vision, but I knew what to expect.

My third loading injection is at the beginning of May. Keeping fingers crossed it will be as good as the other two.

[Hidden in reply to malp1947]

Good luck malp x

Yes the blurred vision is a problem for me too as my "good" eye isn't that good on its own. For that reason I always get a taxi home. Glad we've got the treatment though.

[rosyG]

I had my second Eyelea injection today and againI am so pleased with the way this is done at Moorfields, St Georges. Everything is faultless - the technicians, doctors and particularly the Charge nurse who does the injections. He is fantastic and had the soothing music I mentioned last time playing again today.

Eyeright I'd be grateful if you post your review as I know you have brvo =as do i= and it's very helpful - if you can explain what happened previously I'd every interested- you seem to have switched different types of injection??

Also, I wonder about rinsing the iodine out afterwards- isn't it good to have the continuing sterile field for a while? Just wondering??

[Hidden in reply to rosyG]

Yes, I've avoided asking for the extra rinse because of that worry too rosy. But after having previous inj at 9am and still be rocking in awful pain at 3am next day I was desperate to avoid a repeat! I don't know if it was the iodine or if they scratched my eye with the clamp (of course they don't like to admit that) so I took the chance . The iodine cleans the op field but the antibiotic drops are there to prevent infection too so eye isn't left completely vulnerable and I'm very careful afterwards.

If I have to have more inj I will not ask for extra rinse unless get same problem ie pain lasts so long.

Will post review x what do you want to know exactly? I posted on the last one already x

[rosyG in reply to Hidden]

Thanks Eyesright- I was just wondering about the treatment you have had and the length of time branch vein occlusions tend to need injections for as you mentioned having other injections before Eyelea- I appreciate everyone is different but it's good to hear - about your experiences

[Hidden in reply to rosyG]

Hi rosy, yes we are all different. My treatment journey started two years ago. I had 19 Lucentis inj before they moved me to eyelea. It's been a bit of a rollercoaster for me (you can read all my posts on here for that lol) but others have had a better experience (eg the smilers who posted below). And of course there must be lots who cleared up so quickly they never needed a forum like this one x

I understand why you're asking - I follow the smilers for the same reason - I think we just have to relax, we are doing all we can to help ourselves and it will be what it will be x

On a positive note, it has definitely made me live in the moment much more! I have reduced my hours at work (I'm 55) and spend more time for me now!

Best of luck, we'll all help each other xxx

[rosyG in reply to Hidden]

thank you Eyesright I will see if I can find your posts- I hope you do well Eyelea- I did read it's supposed to be a little more effective so fingers crossed

[Lynae in reply to Hidden]

My Dr. hit a nerve that caused all that pain and he gave me NO pain medicine. I'm worried about my next injections

[Hidden in reply to Lynae]

Russian roulette I'm afraid. Not likely to happen again so try not to worry x. Focus on why inj is good. I tell myself a day or so of pain is worth being able to see for 3 weeks x

[smiler6044]

Hello Eyesright, glad this treatment cycle is over and yes fingers crossed for you.

Mr Smiler went for his 3 month review about 10 days ago. There was a mixed outcome, his original eye treated has had a very slight deterioration. The new Consultant who Mr S now knows quite well (2nd consult) and trusts more importantly said he wasn't surprised to see a slight deterioration after such a long period! He will review again in a further 2 months but an Eylea Injection he said is highly likely to maintain the status quo. Unfortunately his previously good eye now has something going on, be that not the same condition and we await further feedback at the appointment in June. It was a lengthy and very thorough review.

Our very best wishes to you, from The Smilers

[Hidden in reply to smiler6044]

Best of luck to Mr S xx

[rosyG]

Hi Eyesright

Think I have seen your posts now- looked them up on google!! so not sure if have seen all. I wondered about the nerve damage? Did you have a reason given for this? Also, couldn't see link re changing from Lucentis? wondered why this was?/

Hope you don't mind the questions

Last one- what do you find helpful for post inj infection prevention- think this is my biggest worry now!!

Thank you in advance

[Hidden in reply to rosyG]

OMG Google??!! Ha ha I am going to "Google" myself now! x

I think if you click on anyone's name in their post here it takes you to all the posts they've done (I can see yours when I click your name).

Re infection prevention I:

Wear overspecs with side pieces to keep out dust when outside (mine were £6 off the internet) , eg going home and for next 5 days postop, once home I stay indoors for first day , wash hands many times during day with antibacterial soap and rinse very well (rinsing is what makes soap better than hand gels), always have clean towels and bedding (esp pillow slips) day of inj. don't wash my hair next day to keep tap water out of eye, even when do wash hair am careful for a week, use antibacterial soap to wash face but avoid getting water into eye for a week if I can, try not to touch eye for a few days but if have to rub when can't wash hands then do so very gently and with back of finger not tip as less likely to be contaminated. Also am careful doing laundry, always wash hands after handling the smalls!

Standard advice is not to swim too and I don't use my hot tub for a week. I am very careful with my eye drop bottles not to contaminate them.

Don't know if I'm too cautious but it's worked for me for 2 years.

Don't get paranoid about it, just be sensible I think. X

[rosyG in reply to Hidden]

Thank you- several suggestions to follow here that are new- the towels and ed linen and avoiding water in eyes are ones I have followed but the rest are excellent - thank you again

[Lynae]

Eyesight, do you ever get pain medicine for these bad reactions?

[Hidden in reply to Lynae]

Hi lynae, no I don't get given them after inj (hospitals generally don't like to, make you go to your gp usually). I don't go to gp for strong painkillers (codeine etc) due to side effects. Just take paracetamol which normally works for me.

Haven't actually been back to my clinic later after inj pain so don't know what they would do then but expect not much!