Well the wait is over !

Hi all, after review last week the plan was to wait 6-8 weeks to see if oedema changed or not then maybe change to eyelea once nice approved for brvo.

Plan now changed as had rapid swelling yesterday. Was ok at 6am but by 10am couldn't see computer . My clinic were great when I rang them, got me am em appt and oct etc. Consultant decided to give me 3 more Lucentis . He said they had never seen such rapid swelling -ha ha always knew I was special !

Must say, I did get worried on the eye chart test when all was a big blurry mess -never been that bad in last 2 years. Hey ho, at least the IOP is down to 20 so that's good.

No one has any idea why it's happened but I think I am just going to need constant inj. Maybe eyelea will do the trick - come on nice !

I will feel better once this next set of inj start to work and I can see some improvement because if it gets worse I will not be able to work as seeing v small writing etc is a big part of my job and I already use a giant screen and magnifier. I have an occ health appt next week which is good.

Well, it's been a bit of a struggle writing this as the "good" eye isn't that good ! so I'm off now, probably won't post for a while. Best wishes to everyone x

13 Replies

  • Hope this next batch of injections settle things down for you. My follow up appointment is on Monday so I don't know whether I will need more injections yet. Good luck eyesright; I'll be thinking of you x

  • Thanks x good luck for you today, my inj is tomorrow x

  • Thank you eyesright. Hope your injection went well; you probably have that gritty "day after" feeling so I hope your recovery is quick. It seems I have a return of a small amount of fluid in my left eye but have now developed wet AMD/myopic CNV in my right eye which previously had been stable for many years. I have to have a course of 3 injections in my right eye and another one in my left so I am reeling and feeling pretty down this evening. I daresay I'll manage to pull myself together before too long, but it was a shock today because my eyesight is still good. I keep telling myself how lucky I am to be having this treatment, but sometimes it pretty horrid. Anyway, chin up x

  • Oh kalahuchi, what a terrible shock for you. Sending big hugs xxx

    We have 2 choices -give up or dig deep and keep going. The fear of blindness keeps me going once I've pulled myself out of the pit of a bad review and I know you are strong enough to keep going too x

    It's almost a year since I lost a friend to cancer and I remember her parting words daily - "make the most of every day and be happy".

    Take a little time to absorb the shock, have a good cry, then tell yourself this disease isn't going to beat you! Don't let the fear of an unknown tomorrow spoil the beauty of today x Sending you very best wishes going forward x

    Got my inj this afternoon, fingers crossed for all of us x

  • Good luck for today eyesright and thank you for your very wise words. I do agree that it's the fear of blindness that keeps me going back and in some ways this awful condition does make you appreciate every bit of beauty in the world doesn't it? When I really think about it I still consider myself fortunate that these changes didn't happen even a year earlier when no treatment was available. It looks like digging deep then because there'll be no giving up anytime soon! Sending love and hugs your way x

  • Hello Eyeright, we are so sorry to read your post and no wonder you are shocked.

    You will recall, Mr Smiler has the same condition as you and he was due to have laser treatment to try to repair the break. At Monday's appointment the oedema had maraculously cleared after many months of pretty static opaqueness. We are now therefore in a waiting game, as last time we had reached this position, like yourself there was a huge deterioration. Mr S had originally had a major bleed and so, perhaps this will be the norm.

    We are thinking of you and send you positive thoughts and hugs from us both. xx

  • Thanks, great news for Mr smiler x I hope to replicate his success lol x my inj is tomorrow, Lucentis again they will not give me eylea until nice approved but it gives me hope for the future.

  • Oh eyesright, so sorry to hear about this latest development. I hope it all goes well for you. Take care and my good wishes to you.x

  • Thanks x

  • Sorry to hear your news eyesright and hope you get better news next time. Yes, come on NICE - eyes matter! Take care x

  • Thanks x

  • So sorry to hear of your predicament, eyesright. It goes to show how quickly things can change. That is scary! I sometimes feel that some consultants are a bit laid back, but I suppose they can only act on what they see on the day of the examination. I am sure they are trying to do their best. I will be thinking of you - we all are - and wish you the very best x

  • Thanks x

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