Any information gratefully received

I have AMD but had an inferior retinal vein occlusion in 2015. Seemed to be settled but have just had large haemorrhage and have macula oedema. Some vision loss led me to A and E at Moorfieldo this afternoon and they have referred me for some anti VEGF injections. May take 2-4 weeks to get appointment which seems scary

I'd be very grateful for any information about the injections and anything else you know is relevant.

Many thanks

RosyG

15 Replies

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  • Dear RosyG

    I am sorry to learn of the progression of your eye conditions that have led to vision changes. I can point you to information on our website that may be helpful to you, although you may have had some of it before. I will signpost you to specifics in PDF, but there are MP3 versions on some if you need

    macularsociety.org/resources

    I recommend

    Factsheet on Macular oedema

    macularsociety.org/sites/de...

    and

    Treatment for macular conditions

    macularsociety.org/sites/de...

    These both indicate that injections are one of the treatments for macular oedema, but usually advised to be given within 2wks for sudden onset wet AMD.

    macularsociety.org/sites/de...

    Whether this is relevant for your underlying conditions too, I cannot advise. Moorfield is a centre of excellence so I hope they will see you earliest, but do contact them again if you have increasing problems or are worried and waiting.

    The injections should be painless, but may cause understandable anxiety if you have not had any before. If this is the case, we have a Befriending service, who can “buddy” you up with someone who has been through treatment and can contact you by phone to discuss it with you. Telephone our volunteers to request this via our Helpline below.

    Occasionally there can be difficulties following treatment so not sure whether you want to see this leaflet yet, but it also has some useful follow up advice. It is called “Pain in the eye following injections factsheet” but I will leave you to find the link if you want to pursue!

    I hope this is helpful, and wish you well for your treatment, the soonest as possible.

    Regards

    Helpline

    Macular Society

    Tel 0300 3030 111 between 09.00 -17.00 Monday- Friday

  • Thank you for the helpful information and links Marian much appreciated

  • Hi rosyg, firstly a hug x

    Secondly, 4 weeks seems a bit long to wait for the inj, I believe 2 is the maximum guidelines. The Macular society can advise you on that but I would push for an earlier appt.

    The inj usually come as a "loading dose" of 3 spaced 4 weeks apart. Then a 5 week gap and a review where they will do the vision chart and take oct pics of your eye again to check the oedema. Depending on what is found you may have more inj (either booked for another set of 3 & 5week review again, or 1 and another review) or just another review date set to monitor stability.

    It is likely that you will see improvement as the oedema is reduced.

    As for the inj themselves, they are not as bad as you may think! Just make sure you tell the nurses you need lots of anaesthetic and a hand to hold then tell them to rinse well x it should not hurt, let them know if it does or you feel excessive pressure.

    Basically, they numb your eye, put antiseptic drops in, numb it some more, put a device to hold your eye open and guide the inj, inj takes a couple of seconds, you will not see needle, they rinse eye, give antibiotic drops, give soothing drops, then check you can see and you're done. You may see bubbles or such like which is the inj fluid nothing to worry about and goes quickly. They will give you an info sheet.

    I watched a u tube video of woman having hers and it helped calm my fears. There's also lots of posts on this forum about them. Mostly any issues are about gritty sore eye afterwards which good rinsing helps to avoid. If you turn out to be sensitive to the drops they have alternatives so make sure you let them know after the first inj.

    My advice is take 2 paracetamol about an hour before inj. Keep out of the wind after. Ask your clinic or gp about soothing drops you can use after (if your eye waters it's dry and will get painful so needs drops).

    Most of us were a bit shaky at first (some of us even now lol) so be kind to yourself, it's a big thing to psych yourself up for but honestly the vast majority have no problems.

    Let us know how you get on x

  • Oh thank you that is so helpful I've decided to show up at the clinic tomorrow as I'm already a patient there and see what happens!! My eyesight has cleared a lot today so am wondering if they will still do the injections Your post is really helpful and greatly appreciated

  • eyesright Easily the best description of "a poke in the eye" I have come across. :-)

  • Lol. I'm always using the phrase "better than a poke in the eye with a sharp stick" ha ha x

  • Thank you again for your help

    I presented myself at the clinic today and was seen when I explained I had letter from A and E- Have been put into system and now have to wait until given appt but the consultant said it should be 1-2 weeks and would probably start inj next week- so timing much better now.

    Could I ask about after effects please- I will have to travel by public transport and wonder how it is after injections- also can one work as normal etc. Also have holiday booked during the three months initially involved ( away for 8 nights) and wonder if it's risky to be away after inj in case of infection which seems possible during week after the injection??

    Sorry for all these questions and thank you for your support

  • Hi rosyg, everyone is different after. Personally I always get a taxi but my friends elderly grandad takes the bus. Vision in the inj eye gets a bit blurry for a while and my other eye isn't that good so I go home easiest way!

    Also means I'm not in the wind etc so less likely to have grit in eye or rub it both of which you don't want (infection risk and eye still numb so you don't know if rubbing too hard).

    I was very worried about inf initially but now have settled into quiet vigilence - the clinic should give you info. Don't go swimming, keep out of wind. I take care not to get shower water/shampoo in eyes.

    If going abroad ring your travel ins and have condition added. Make clear inj req is a new diagnosis. I had to do this and didn't have to pay extra but you may. Unless you're going somewhere remote or undeveloped any hospital should be able to deal with issues.

    If at home just go to nearest a&e if any probs.

    Well done for getting an earlier date x

  • Thank you again- it's great to know more- very kind of you

  • Hello RosyG

    I am sorry to hear of your eye problems. Eyesright has given you a fair run-down of the procedures and is spot on. I would just like to add that we all react differently and even every injection is different, possibly due to different people administering them. And yes, press for an earlier appointment.

    I know this is a worrying time for you and I am with you all the way. I, like many others on this forum, have gone through a roller-coaster of emotional turmoil and I still have my moments at times. But take heart, you are not alone with this and the injections have proved very effective for many sufferes.

    Good Luck and a big hug, x

  • Thank you Ayayay

    It's kind of you to reply- I will see what is said tomorrow- my eyesight has cleared today so don't know what they will do re injections but have the report about a large bleed and oedema from yesterday to show them

    I was quite scared yesterday but having this support is very helpful

    Thanks again

  • Hi RosyG. Just wanted to add my injection experience. I had my first one last week and the thought of it was much worse than the injection itself. The nurse was lovely and held my hand and the injection was over before I realised it had started. I went out to eat the same evening and drove myself to work the next day. My eye just felt like it had a slight scratch.

    I know what an emotional, scary time this is. Our eyesight is so precious and we don't appreciate it until something like this happens. Hope all goes well. x

  • Thank you for that cwd that makes me feel much better!!

  • forgot to add- managed to get dates booked today so start inj on 10th Feb- not too bad!!

    Very grateful to you all for replying

  • have just re-read all your replies to help calm myself down. It has seemed like a long wait for first injection- I will be glad when Friday is over but do find all this information really helpful

    Many thanks

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