moving on to eylea next!

After ny visit to the American hospital in Paris, i wasn't too sure about their opinion as they didn't seem too concerned but yesterday i was with my surgeon for a long time as i wanted to know exactly what i had. It's something called detached pigmented retinal epithelium - it means i have detached layers of the retina and fluid is trapped in there( i think ) , they can't operate as it's in the centre of my eye - So he is going to try injections with eylea and i'm really hoping that this will help. My friend goes to a brilliant consultant in Manchester and she rung to see if she could speak to him on my behalf, he said that my surgeon is doing everything possible for me and doing the right things- so that's it, i've had a 3 rd opinion now and feel better knowing i can really trust my surgeon - my first eylea injections is a week on Monday so watch this space! xx

[Hidden]

Glad you have an answer you feel you can trust x They thought I might have had a split retina initially but luckily the angiogram showed it wasn't.

Hope the eylea works well for you, best wishes going forward x

[squinty]

Hi janalgarve thats great news and at least you know what's what! Where are you having injections ? Hope you don't have to pay😄 I'm due to have my 4th Eylea on 22 November, not sure if they are working but time will tell. So so scary isn't it! We all react differently after injection the first one being the worse. Good luck and sending you hugs from

London, Keep us posted this site is brilliant xxxx Squinty 💜

[squinty in reply to squinty]

By the way my injection is a day after you x keep in touch

[Hidden in reply to squinty]

Hi Squinty, well I had my Eylea injection and it was about the same as having Avistan but I don't think it was as painful afterwards, just sore instead of a needle going in whenever I blinked! He's going to do 2 more in my left eye and then I'll have a test to see if anything has changed- it's all so frightening but it's good to have people to 'talk' to. By the way I am paying!! unfortunately I haven't had any health insurance. Sending you hugs too 👁.

[squinty in reply to Hidden]

Hope it goes well with other 2 I can't see much different after 4 injections but it's holding it at bay. I'm living in fear that my dry eye doesn't got wet xx hugs back but all so so scary as u say

[Ayayay80]

Hi Janalgarve, so sorry to hear of your worries. We are all with you. It seems I have the same or similar condition as you. It was described as Pigment Epithelial Detachment (PED) with vitreo-macular traction, which means that my vitreous gel is abnormaly sticky, sticking to the retina and pulling on the macula. Something like that! All this is in conjunction with wet AMD. At the clinic I was shown the scan and it showed clearly how the retinal layers had separated and formed a large swelling with fluid collected between the layers and one of those massive drusen. Apparently, PED is very resistent to VEGF treatment. That was why my consultant was at first reluctant to give me the injection. When one month later my visual acuity had dropped from 20/40 to 20/63 he decided to start me on eylea after all. I have now had my second injection.

Don't worry too much. I am sure you are in good hands and that your consultant will do what he thinks is best for your particular condition. Sending you my love. x

[Hidden in reply to Ayayay80]

Hi Ayayay80, thank you for your kind words and yes we do seem to have the same symptoms. I have had 1 Eylea injection so far, so no results yet he will test me after the third one. My surgeon actually carries a picture of my eyes on his phone so that when he is working with his colleagues in Lisbon he can show them to see what they think - he says I am a very rare case and he is attending a Christmas conference soon where Specilists from all over the world attend, so he is going to bring up the case of my 👀. My love and best wishes to you too 😳 🎅

[tallyho]

Hi there just wishing you all the best. Eylea is becoming more widely used now as the first drug to try for a variety of eye diseases as the results have proved the extra expense worth it. Some are able to go 8 weeks without an injection as it lasts longer than some other drugs. I had my 8 th Eylea last week I had an 8 week break to see what happened and for me it was disaterous I lost 11 letters on the chart and had to move to 1 meter and that's with my best eye and the fluid went up by 178 micrometers hoping to get the letters back before Christmas

Take care

[nanapat112 in reply to tallyho]

Hi, Hoping all goes well. It will be the best Christmas present. My optician told me the injections cost over £1000 each. I don't know if this is true?

[Hidden in reply to nanapat112]

Yes it's true - I live in Portugal now but Avastin cost €600 each but it's more than doubled now with Eylea - I keep thinking I'm going to end up having to sell my house!!!!!! Hope not cos that would be an awful Christmas present!!!!!!🎅😟

[nanapat112 in reply to Hidden]

Thank you for your reply. I hope you find the money

to pay for any treatment.

[Hidden in reply to tallyho]

Hi Tallyho , I'm so sorry to hear that but can you recover the letters once you've lost them? I don't really understand all this but I know my eyes are a tiny bit worse and get sore but I am seeing my surgeon next week for a chat, so will tell him. I was hoping that I would be able to go 8 weeks soon as it's costing a fortune but as you say it's worth it just to keep your eyesight steady. Take care too.🎅😳 ❄️

[tallyho in reply to Hidden]

Yes they can recover - well mine have I got my letters back and more not sure how long for though

[tallyho in reply to tallyho]

I don't pay for the injections I live in the UK and am very grateful for the fantastic NHS

[Hidden in reply to tallyho]

That's great news , you're giving me some hope - thank you.