Comforting to find this: My symptoms are the... - Macular Society

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Comforting to find this

20 Replies

My symptoms are the same, a black spot in the night but normal vision during the day. I've just been told that i have Wet Macular Disease and I'm frightened.

I am to have my first injection next week and I'm not afraid of the pain but failure.

Is there any reassurance anywhere please?

20 Replies
kevinaki profile image
kevinaki

Whether your injection is painful or pain free depends on the skill and technique of your injector. Ask questions, take notes and record any after effects when you get home.

Don't worry...amazingly, the injected drugs work to halt the progression of wetAMD and you may eventually get spaced out to one injection every 8 weeks or more.

Now you are seeing a weak "blob" in subdued lighting, but in normal bright light it goes away. Be thankful for that and the drugs should stabilize it from getting worse.

Meanwhile it's up to YOU to save your good eye with these Mac Society recommendations:

macularsociety.org/sites/de...

macularsociety.org/news/res...

macularsociety.org/sites/de...

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in reply to kevinaki

Thank you very much indeed.

2468G profile image
2468G

Hi Medsec2000

The injections seem to help most of us so try to feel it is a positive treatment.

My leak was quite severe and although my vision hasn't been restored fully, it has stopped the leak and further damage. I have had 6 injections so far but none since September.

I feel Eylea has worked well for me. I hope this reassures you a little. Good luck with your treatment. 2468G (uk)

in reply to 2468G

Thank you very much.

in reply to 2468G

I'm pleased for you. Great to read your reply. Thank u for taking the trouble.

Retired130 profile image
Retired130

You should be prepared that you may need to switch injection medication to find the one that works best for you. My wife, who has WMD in one eye, was on Avastin injection every 4 weeks, but after 15 months, the Avastin stopped working & after her last 2 Avastin shots, she had regressed back to where she had been 13 months previous. Her Retina specialist immediately switched her to Eylea with one shot every 4 weeks for 3 months to get her back to where she was before the Avastin failed & then started slowly spacing the Eylea injections further apart - 5 weeks, then 7 weeks, then 8 weeks, & now 10 weeks. He is doing the spacing this slowly, so she does not regress backwards, as he is concerned if that happens, she may not be able to fully come back from a major regression.

Besides Avastin & Eylea, there are others, so you & your Retina specialist just need to find the one that works best for you. On this site a few weeks ago I remember reading where someone started with Eylea & it failed after a while & he/she was switched to Avastin which is working wonderfully.

So I am writing this reply to let you know not to get discouraged if one medication should fail as there are others to try & you & your doctor need to find the one that works best for you & that can take some time to determine.

in reply to Retired130

Appreciated. Thank you very much.

eesnapal profile image
eesnapal

The best advice I suggest is to face down your fear. The current portfolio of drugs are extremely effective at arresting the disease. Your eye sight is unlikely to deteriorate further and you will probably experience some improvement. The procedure itself is a little uncomfortable but rarely painful. Sometimes there is a feeling of a little grit in the eye for 24 hours after anaesthesia has worn off. The clinic can give you some drops to alleviate but generally you have to ask.

It is very quick and kindly and it beats blindness in that eye. I write as one who has been treated for over 24 months very successfully.

Good luck

Steven

in reply to eesnapal

Your advice is surfboard. Thank you.

in reply to

Oops. My phone can't spell. Just trying to say thank you !!!!!

Sending you a hug X

Good advice from others on here re the treatment. They've caught you early and you are now " in the system " so things should go pretty smoothly ( always keep an eye on appt dates so you dont miss one). Lots of us on here are still working and driving, the treatment is worth it even if one has to have it long term. Luckily ( ie taxpayer funded NHS) in UK it's free.

Be kind to yourself - sight probs are known to be akin to bereavement emotionally. The Macular society have an excellent helpline and can give you info and support.

Good luck going forwards and let us know how you get on.

in reply to

Thank you. I appreciate your words of encouragement.

I am a Brit now living in Australia ... no free healthcare here!

in reply to

Hope you get all the treatment you need under the Aussie system. Just so you know, in case there's nothing local to you, the uk based Mac Soc support people worldwide.

in reply to

Thank you

springcross profile image
springcross

Hi Medsec2000. I have the same as you - wet AMD, mine is in my left eye. I have normal vision during the day too but at night when I am in bed and I open my eyes, I can see a black blob which looks for all the world like the type of old fashioned bomb that Guy Fawkes would have used to blow up the houses of Parliament and I can even see the fuse coming out of the top - seriously. Prior to that, it was a rectangle shape which looked like it had been twisted in the middle - most peculiar. I was frightened too when I was diagnosed but I try not to think about it too much now. I am having my eighth injection on Thursday - it's been almost ten weeks since my last one and I started, like my most other people, having them every four weeks so it just goes to show how much things improve. Try not to worry although I know it's very difficult but it will benefit you in the future. Good luck. x

in reply to springcross

Thank you. I know EXACTLY what u mean about the shape. Snap. Is so helpful being able too receive these messages.

Perhaps u and i could help in the Houses of Parliament now ... they're making a rare mess. Sorry. Un not here to get into politics. Macula disease enough. Enjoy Easter.

springcross profile image
springcross in reply to

I know we're not here to get into politics but I couldn't agree with you more, it's a disgrace. Anyhow, you enjoy Easter too. All the best.

springcross profile image
springcross

Forgot to mention before but my husband has informed me that Guy Fawkes used more than a little bomb to try to blow up Parliament! Just goes to show how much I know but I'm glad you knew what I meant.

in reply to springcross

Well I've got s BIG bomb in my eye! I'm British. Lived in Lincolnshire for 65 years before moving to Australia.

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear Medsec2000,

Please give us a call to discuss any concerns.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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