Dr's visit Wednesday and worried

[Lynae]

I'm worried about my follow up appointment after 3 Eylea injections in both eyes. I'm supposed to get reevaluatedand be given a prognosis. Someone rang the doorbell and from 12 feet away, I couldn't see that it was MY DAUGHTER!!!!! AT AGE 53, I'm worried.

[Hidden]

Hi Lynae sending you a hug x I'm sorry you haven't had the improvement you must have been hoping for. I don't know about eylea but with Lucentis it's not unusual to have more than one set of 3 inj.

Stabilisation is usually the aim - are you worse or just the same as when you started? Both eyes individually?

It may be that the inj work for you but you just need more. or they might change the inj.

My journey has been up and down,had 18 inj now. I've adjusted my expectations as getting stressed doesn't help in the long run. of course we can allow ourselves to let the disappointment flow past and acknowledge it but don't let the worry of an unknown tomorrow spoil the potential of a happy today x

Wishing you all the best going forward x

[Lynae in reply to Hidden]

Awww, that's so sweet of you to say. I'll keep you payed

[Rosalyn-helpline Partner]

Dear Lynae,

I am sorry to read about your concerns.

I am attaching the link to our booklet on treatments:

macularsociety.org/sites/de...

and our care guide for wet AMD:

macularsociety.org/sites/de...

Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest. I am attaching our booklet Emotional impact which references the counselling service:

macularsociety.org/sites/de...

Please do not hesitate to contact the Macular Society helpline if you would like to discuss your concerns further.

Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111

or you can contact us via

[e-mail]

Kind regards,

[Lynae in reply to Rosalyn-helpline]

Thank you SO much. I may need the information tomorrow

[tallyho]

Hi there it is a very worrying time for you and I know what that is like. I am a few years younger than you and have had 7 eylea injections. It is the first drug they have used for my eye condition that seems to be working ( I have tried 2 other drugs)

I find that the RNIB are brilliant if you ring them and ask for the Eye Health Team they will be able to answer any questions you have they do not just know about AMD but a lot of other eye conditions I have always found them very helpful. I too have an appointment on Wednesday and am hoping for good news I hope you will get some good news too. Sometimes they will continue another 3 loading injections if they are not sure or there is an improvement in the amount of fluid and then reassess but it is a case by case situation

Take care

[Lynae in reply to tallyho]

Good luck with you're appointment tomorrow. let me know how it goes and I will let you know about mine. Lord watch over us and give us strength for whatever comes our way

[Paulinetobytom]

Hello, I am new to this service - Have had 5 Eylea injections in both eyes and am always awaiting another injection in both eyes, as I know they are working slowly and even though I dread the pain of them. I have just learned, through great research that this condition may have something to do with Blue light outside and inside (computers, light bulbs as well as light from the sun) All of us who suffer from this should ensure that sunglasses and ordinary glasses have 100% uv protection and also 100% HEV (high energy visible) protection. This is the latest research into the problem. Unfortunately I can't find an optician who can provide the latter, and would welcome some help re finding such an optician. If you have a blind spot at night, when opening your eyes - this needs to be monitored. My left blind spot has reduced since the injections, and now, even while I am having a 2 month wait for the next injection, my clever specialist is intending to inject my right eye (the more advanced) every month for the next few months. I am, however, actually seeing now a change and breakup of this awful blind spot. Think positive and have faith - I am awaiting a miracle, and I will get one. Best wishes - Pauiline

[Lynae in reply to Paulinetobytom]

Before I was diagnosed with the wet MD I worked in front of a computer for 8+hours a day for 6 years. I used to get headaches too. Wouldn't doubt it contributed to turning the dry to wet. I have been wearing uv glasses for protection while I'm outside for years. I've been getting injections in BOTH eyes since September and am at 2 month intervals. I'm not seeing any better because my astigmatism got worse but the bleeding is almost stopped so i Thank JESUS for everything!

Keep being positive and follow you're Dr's orders. I'll be praying for you