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Wet macular degeneration

(7 Posts)
BrightandEarly Sun 28-Feb-16 18:50:17

Does anyone have any experience with this condition that they would be willing to share?

My DM, who sadly also has hearing loss, has just been diagnosed with this condition.

She had her first eye injection on Monday, but there's not very much information available about success rate, and what success or failure looks like in terms of delay of loss of vision.

I feel so sad for her as the prospect of seeing and hearing being difficult is just terrible.

Thanks thanks

TheAussieProject Mon 29-Feb-16 03:22:51

My father has it. When first diagnosed, they told him he would just need 3 injections. He is now at his 6th. It is getting better but not as quickly as it should. Last time he was in the waiting room in the hospital, the man sitting next to him had already had 50 injections.
My father only has it in one eye. His good one.
3 days before the injection, he needs to put antibiotic drops in the eye and the day following the injection he go to the ophthalmologist for an examination .

MyFriendsCallMeOh Mon 29-Feb-16 03:31:49

My grandfather has this, he'll be 100 next month and gave up on the injections about 5 years ago (I think he had 3 or 4) as he found it didn't help at all and found it all very stressful. He's also increasingly forgetful and disoriented so often forgot why he was going through it. It was kinder just to let it go, especially given the lack of success.

Sorry to hear your DM is going through this.

Karoleann Mon 29-Feb-16 06:40:25

Success or failure depends on how quickly it was treated.

This website page has a good explanation

www.lucentis.com/lucentis-wet-age-related-macular-degeneration-treatment

If you mum is a smoker, its really important that she stops. Supplements can also help in some people, I'd recommend the PreserVision formula which was the one in the clinical trial that was proven to slow the progression of AMD.

Even if your mum is one of the few that the injection doesn't work for, she will never go completely blind. AMD only affects central vision, so with the affected eye she will find it difficult to read or see fine detail, but with both eyes open her vision will still be good. But it doesn't affect navigational vision, so she'll still be able to get around.

TwentyOneGuns Mon 29-Feb-16 06:43:41

My DM (71) has had this for the past couple of years. She has regular injections and although they're pretty unpleasant they do seem to help.

BrightandEarly Mon 29-Feb-16 07:51:25

Thank you very much for taking the time to respond, and sorry to those whose relatives are also going through this.

My DM is very scared that, as well as not being able to hear well, she will lose her vision. It would be devastating as her hearing loss means that the things she can still enjoy are very visual - art galleries, photography and reading. She also adores her DGC (my DC) and is very sad at the prospect of not being able to see or hear them properly. We are all very worried.

But your posts are reassuring. I did not realise there was a chance of her vision improving as a result of this treatment, I thought it was a case of preventing further decline. Does anyone know if she will have to have injections for the rest of her life now (assuming they work)? Only one eye is affected but she's been told that this significantly increases her risk of the same problem occurring in the other eye.

She is a smoker and had been told it would be helpful if she stopped. However, she is a highly anxious person and these issues have increased her anxiety to very high levels, so I'm not sure how realistic stopping is for her at the moment.

Thanks all thanks

BrightandEarly Mon 29-Feb-16 21:33:19

Sorry to post again but just in case someone knows the answer to this:

My DM had her treatment today and was given Avastin rather than Lucentis - the latter is licensed but the former is not.

I think Avastin is much cheaper, and I have found some speculation on the web that drug companies may be preventing its licensing to be able to continue to sell Lucentis.

But now I'm worried she's been given a drug that's less likely to be effective. They say she'll be given Lucentis in four months time if these first injections are not effective, but by then wouldn't there possibly be more sight loss?

Thanks again

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