It's a waiting game now

Hi all, had latest review today. Dr not sure why oedema still there. Either inj working but eye producing more or fluid is old and Lucentis no longer doing its job. Only way to know is to leave it 6-8 weeks, check again.

He says if Lucentis not working will give me Eylea but it's not yet okd by Nice for brvo. Hopefully they will in October so timing just right lol.

I was disappointed but not devastated, just hope however it goes over next few weeks there's no permanent damage increase. Will be checking amsler carefully.

Anyone watching the Paralympics? What an inspirational bunch of people!!!

16 Replies

oldestnewest
  • There are so many ups and downs aren't there? I hope they get on top of your brvo and yes, it is great timing for the Eylea approval; something to be grateful for. In fact my consultant told me that Lucentis had only been approved by NICE in the 12 months before I developed cnv and before that they hadn't used to treat it. The thought is so shocking. It's good sometimes to be in the right place at the right time and I shall be forever grateful. I have 2 weeks to go before my next check up so it will be a good 10 days before I start to get anxious about what they might find this time. At the moment I am quite positive, but you never know what is going to happen next. Anyway, chin up and carry on.

    I have been watching the paralymics too and it's very gripping stuff and wonderful to know what can be achieved even when the chips are down. I just love "The Last Leg" which is so funny and irreverent; very nice to see the athletes letting their hair down a bit. Ellie Simmonds lives fairly near to us so we have been watching the swimming with interest this year. x

  • Thanks kalahuchi x good luck with your review x

  • Good morning Eyesright. Just read your post, I truly hope things go well for you. Sometimes you feel it's one step forward and two back. Stay positive. I send you best wishes and hope things settle. Take care x

  • Thanks Sal2, all the best to you too x

  • Oh eyesright, a worrying time for you but you are right, the paralympians are inspiring! Those of us with eye conditions rather than AMD always seem to be lagging behind with approved treatment - a shame that NICE doesn't allow our doctors to make the decisions on those with similar eye conditions who would benefit from a particular treatment (or similar symptoms eg bleeding vessels, if you know what I mean). I certainly ended up with permanent scarring due to late approval of Lucentis for myopic CNV. You always support others on here and that is appreciated. Hoping that approval is given by your next appointment. Take care x

  • Thanks jayral x

  • Hi there just letting you know you can keep up to date on the progress of Eylea and NICE guidance for BRVO on the NICE website you can then see exactly when it is approved yourself you may know this already and be following it but just in case ....

  • Thanks, didn't know that x

  • Hi Eyesright, long time no speak but we have been watching updates on The Forum.

    Mr Smiler is in a similar position with BVRO but has had Eylea injections as you know. Since May 2015. Two out of three helped move from 0% to 30% and after number two a great 90%. Since then the third injection resulted in no change, then 6 months of no change before fluid reappeared big time. Back to two Eylea injections and now static at 79% but the fluid won't drain. There was no improvement between the two injections. The Consultant has now decided to try to laser repair the vein. We will know more after next Wednesday!

    The waiting game is tough but we must keep looking to the future.

    Take care.

    From The Smilers

  • Thanks smilers, mmm maybe your consultant / hospital is more progressive than mine? Maybe there's some other criteria - I plan on checking out the Nice website.

    Mr smiler has had a similar rollercoaster to mine, thanks for posting his progress, it is of course of great interest to me x

    Here's to a positive future for all of us x

    PS just read the Nice site - eylea was okd for central retinal vein occlusion, now they are looking at branch rvo.

  • Dear Eyesright what a disappointment anyway ! I don't understand where are you? I'm in London and no probs getting Eylea injections. Guess wot I'm in Italy at the moment and spent the morning in A+E nothing to do with eyes but a bloody ear infection it's been excruciating! Hopefully got right antibiotics now to treat it!

    Good luck with your appointment in 6to8 weeks it seems now Eylea is the one to go for. I've also started to take loads of vitamins God knows if they help but my eyes aren't so dry but they are sore. Got my third injection next Tuesday so will wait n see if any more improvement. Keep us posted as we are all here for each other.

    Hugs from

    Squinty 💜💜💜

  • Thanks squinty x Eylea is available for some things but it's brvo that Nice haven't yet approved eylea for. If you have another eye condition it will be different. Sorry, can't recall what you have?

    Enjoy Italy, I love it, what a shame you got an ear infection, hope you feel better soon x

    Ps I'm in Wiltshire

  • Oh I see I've just googled bvro good luck with that ! Yeh Italy is lovely but my ear infection is hampering my fun! Take care n keep in touch xxx

  • Hello eyesright

    I know the feeling. The waiting and waiting and the uncertainty of what will happen next is unnerving. Is your condition similar to PED? Whatever the case may be, I wish you all the best. Unlike the politicians who claim "We are in this together" we really are.

  • Thanks ayayay, what is PED?

  • Sorry, eyesright. PED stands for pigment epithelial detachment. Added to my condition is vitreomacular traction which means one of the layers is sticking to the vitreo and pulling it away. I got the result of the consultant's findings from my GP. From what I have found out on the internet it means that and area of the three layers of the retina have separated so that there is a gap filled with fluid or drusen, hence the swelling. It would be nice if my consultant would explain things to me. He probably thinks old fogies are too dim to understand. He was too busy telling me I must stop smoking (he may be right at that) and to eat lots of greens and that he will see me again in 4 weeks time. I will have some questions ready for my next visit.

    Take care now and let me know how you are getting on.

You may also like...