Concerned & scared

[MinnieMac]

Recently been diagnosed with wet macula deneragtion - came on suddenly..I am only 55 - whats my prognosis

[Caradog29]

hi, first of all don’t be scared, although I appreciate that’s easier said than done.

How bad is it? What’s your vision like in that eye? You’ll probably need regular injections to stabilise it. They aren’t as bad as they sound! Not painful just a little scratchiness for a day or 2 after.

For around 25% of people they can not onLy stabilise things but lead to an improvement of vision. I was one of the lucky ones and now have perfect sight in that eye. I’ve other more serious problems with my other eye but that’s another story!

You’ll start with monthly injections which will then hopefully get spaced out as things improve. There’s also a new drug being rolled out which can last for around 3-4 months.

Don’t despair you’ll be ok.

[Penelopeflower]

Hello MinnieMac, it is quite understandable that you are scared, but please be reassured that the treatment will be fully explained to you, and you will become less frightened. I have been having injections in one eye for wet macular degeneration for some years now, and they have helped greatly in stabilising the vision in that eye, thr injections have now decreased to every three months from about every seven weeks, and i am sure you will benefit from them. It will all be explained to you and will become clearer. As Caradog29 has said the injections are not painful, just a bit of scratchiness for a day or so, but i am sure they will help. Best of luck and keep in touch with this lovely site which is very supportive and helpful.

[Ruffles21]

It's perfectly understandable to feel scared. I certainly did. I have injections in my left eye. As with everyone, it was every four weeks but now mine are every fourteen weeks with a possibility that I won't have one next time. I have never felt the injection, and only occasionally the scratchiness later in the day. I had telephone counselling from the Macular Society which I would certainly recommend in coming to terms with your diagnosis. It definitely helped me.

[MinnieMac]

Thank you to those of you who responded first time on this site so really appreciate the replies. Trying to get my head around it. I beat breast cancer 5 yrs ago...I can certainly do this....

[Carol_MacularSociety Partner]

Dear MinnieMac,

The Macular Society Advice and Information Service is open 9am – 5pm Monday to Friday on 0300 3030 111. Alternatively, you can contact us via: [e-mail]

Please see this link to our support services.

macularsociety.org/support/

Kind regards,

Carol

Advice and Information Service

[Writing_girl]

Hi MinnieMac

I too have recently (2 weeks ago) been diagnosed with wet AMD (right eye, possible dry in left) and totally understand how you are feeling - scared barely covers it for me. You are not alone in feeling as you do, I've veered between feeling reasonably positive to full on pessimism (and everything in between!)

We are not alone in this though, I recommend watching the video of the Macular Soc. counsellor talking through the ways in which we deal with/respond to this news, its helped me a lot to know how I am feeling is 'normal'. Like anything that shifts the ground we walk on it takes time to absorb this news. Best wishes to you.

[MinnieMac]

Thank you for your kind words.. its very scary and yes I've gone from feeling scared. ....expecting to go blind!! To feeling very positive....its nice to know I'm not alone even though I feel alone...if you know what I mean ...I have a loving husband and friends but it's hard to explain how I'm feeling....it was the same when I had beeast cancer....thank you xx

[Writing_girl in reply to MinnieMac]

We just need to hang on to knowing we are not alone!

[magicman229]

I second everything everyone has said above. The good news is that treatments for wet and dry are getting better and better, especially the wet variety.

I was very anxious about the injections, as I suppose most people were before the first one. But as with most things, the anticipation of the unknown (in this case an eye injection) is worse, much much worse, than the actual procedure.

I had visions of someone coming at me with a big hypodermic needle and just jabbing it in the middle of my eye. Not so. You will get numbing drops a few minutes beforehand, and the procedure is quick and mostly just a little pinch, if even that. Some (me) get floaters for a day or too, small price to pay for the benefits of the procedure.

You will do fine. Keep us informed on how your treatment goes.

Best,

Phil

[MinnieMac in reply to magicman229]

Thank you...2nd injection done. Not a great experience 2nd time round and no improvement as yet. What's worse is that it's not a visible problem (sorry no pun intended 😜) so people cannot tell you have a problem...ill keep positive and see what happens x

[Mollydingomurphy]

Hi MinnieMac. I was scared to death when I was first diagnosed with wet in my left eye. I just had my 6th injection in my left eye 2 days ago. The injections are totally painless,a little sore for a day or two and that's it. My vision has improved dramatically! I feel very hopeful for my future sight and you will too. Hang in there. This group is fantastic also, like a family that really understands what we all are going through.

[MinnieMac]

Good morning all!!I keep receiving great messages of support from you all...thank you. Had my 2nd injection this week...more painful than the first...the lady administering it was awful...not gentle or caring at all amd didn't wait for the drops to work...it was bloody painful. Burst a blood vessel too. I'm Concerned as I haven't seen any improvement as yet . 😕 xx

[Mollydingomurphy]

The first two injections did nothing for me either. I still could see all the trees and road signs bending. I was switched to another medicine and my vision is much improved. Sometimes it takes time and different meds. Don't be discouraged.