Amd

[WADDINGTON]

Just received letter off hospital bout dye injection to look at my blood vessels back of my eye and the injection in my eye. What's worse this is my first treatment.

[Rosalyn-helpline Partner]

Dear Waddington,

Have you been diagnosed with wet macular degeneration?

Please contact us directly if you would like to discuss any concerns.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111. We are closed for New Years Day.

Alternately, you can contact us via: [e-mail]

I have copied links to our Guide to AMD, Treatments and Care guide to wet AMD:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

macularsociety.org/sites/de...

Kind regards,

[WADDINGTON in reply to Rosalyn-helpline]

Thanks I'm only 49 I got dionosed with age realated macular degeneration this month at hospital .

[horseaddict in reply to WADDINGTON]

I was diagnosed 14 years ago at your age.nobody advised taking eye supplements etc etc. I had NO advice given to me.14 years of no problems. Eyes starting to show differences.namely my lights look dim at night in the home. I have dry AMD both eyes. Now taking eye vitamins in a mad panic.had I been advised 14 years ago to take them I would have done so to try and slow it down. Very very frustrated that nobody..even the optician..wants to talk about this and give any snippets of advice. I have eyes tested every 12 months.they photo the back of my eyes and if I dont ask!!!! They dont mention it..OF COURSE I WANT TO KNOW IF THERES ANY CHANGE IN THE MACULA..I feel like nobody cares and I've just got to await blindness..scary stuff indeed!!!!!

[Rosalyn-helpline Partner in reply to horseaddict]

Dear horseaddict,

Please contact us if we can be of any help:

macularsociety.org/support-...

macularsociety.org/news/new...

facebook.com/groups/2516963...

Kind regards,

Macular Society Advice and Information Service

0300 3030 111

[e-mail]

[horseaddict in reply to Rosalyn-helpline]

Thank you. I have spotted up on all the sites and data etc. But..today I read that oxford university may have a cure? For dry AMD .trials injected a solution which Carrie's a virus containing modified DNA into a patient's eye with dry AMD. The virus infects cells called the retinal pigment epithelium thereby correcting a defect that causes sight deterioration..IM EXCITED about this..can we share to all our DRY AMD members on here please?..this may be available sooner than we think. Trials where done in February this year.

[Rosalyn-helpline Partner in reply to horseaddict]

Dear horseaddict,

Is this the research that you are referring to?

macularsociety.org/news/wha...

Kind regards,

Macular Society Advice and Information Service 0300 3030 111 [e-mail]

[horseaddict in reply to Rosalyn-helpline]

Yes it is..I didn't know about this but it gives hope to people like me that still have sight. Thank you..I'm not sure some members have seen this. It needs plenty of attention. Its given me a hope I never thought possible.

[Hallas24 in reply to horseaddict]

You’ve given me hope. I too have dry AMD in both eyes. Can’t think of the future.

[horseaddict in reply to Hallas24]

Any snippets shared are good.get yourself on the AREDS2 eye supplements.thats all that's available for now.i wished I had started them 14 years ago but nobody advised me..if they slow progression that's good..best wishes to you.

[Catseyes235 in reply to horseaddict]

Are you having injections for AMD? 14 years ago these were very rare only becoming available from 2011. My brother became blind about then as no treatment available. I, and my other brother have AMD and are successfully being treated with Eyelea injections. There is no definitive research on the benefits of vitamin supplements I’m afraid. One specialist recommended them another didn’t seem bothered. I take bilberry supplement as cheaper than most but who knows if it helps as no one is monitoring though they may be somewhere else.

[horseaddict in reply to Catseyes235]

No..no injections as they are for wet AMD . And yes..I wish we had some sort of evidence that taking eye supplements definitely slow progression..its scary stuff not having a definitive answer.

[Catseyes235 in reply to horseaddict]

Apparently most adults have some degree of dry AMD (I did) but you are not being told whether it is getting worse or what the implications are. Is this your regular ophthalmic/opticians or a hospital eye specialist? You should be referred to eye clinic via your doctor if a problem. Sounds like you need to go armed with a notebook and questions!

[horseaddict in reply to Catseyes235]

I'm only seeing an optician every 12 months. They dont mention it until I ask? And then they just say minor change. My last new prescription in August last year was too strong. I went back the 1st time and they tweaked it and changed the glasses. The glasses are still too strong..and so I am still using my 2017 glasses and can see perfectly with them...the optician insisted that the 2nd pair should be used and I should persist with them..I think high street opticians do not give their customers the time needed as appointments are a timed slot and so we are seen in a conveyor type manor. I have toyed with the idea of seeing my GO to refer me to a retina specialist..but as I have nothing major..as yet ..to report?? I'm not sure I will get referred.

[Catseyes235 in reply to horseaddict]

If glasses are too strong demand a refund in front of all their customers. I did when this happened - .glasses should be CORRECT fir you and you should be able to SEE properly without any problem. Don’t believe you will ‘get used to them’. It’s like when shoe shops tell you tight shoes will stretch! They will do anything to sell glasses and new frames. That’s their business. Always keep your old prescriptions and compare with previous ones. I changed to a different optician (who still got glasses in wrong frames and ended up with a £75 refund as it took two goes to get things right).

It sounds like they are making you worry unduly and you need to see someone who can assure you. Are you seeing wavy lines, any distortions, cloudiness or anything else?

[horseaddict in reply to Catseyes235]

Without glasses lines are wavy and seem to be moving?..with glasses this stops.i have dry and in both eyes. I am on AREDS2 and have a cup ful of spinach every day. I've just started to get the odd floater..but they dont bother me too much I can live with those. Should I ask the optician to refer me to the retina specialist at the eye hospital? So I can have a proper discussion..thank you for your response.

[Catseyes235 in reply to horseaddict]

Is that a question or a statement? Have you an Amsler chart as that is best way to determine if getting wet md. and yes get a referral if you can but you still have to go through your doctor. Opticians can only recommend this to your GP.

[horseaddict in reply to Catseyes235]

Thank you. I will go via my GP..I do have an master grid..and lines are wavy..just as they where at my eye test .the optician did not advise I may be getting wet AMD..so leads me to believe she wasnt worried about the waviness?. Thank you for your reply.

[Catseyes235 in reply to horseaddict]

As I said previously, don’t go to that optician again but yes do go to doctor. V important to reduce cholesterol and if you smoke to stop. Good luck.

[horseaddict in reply to Catseyes235]

Thanks for reply..I'm on the case.

[Rosalyn-helpline Partner in reply to WADDINGTON]

Dear Waddington,

We have a new Working Age and Young People's Service which has recently been launched:

macularsociety.org/news/new...

It may be well worth you getting in contact with Colin Daniels. Please contact us direct for Colin's contact details.

There is also a linked Facebook group:

facebook.com/groups/2516963...

Kind regards,

Macular Society Advice and Information Service

0300 3030 111

[e-mail]

[WADDINGTON in reply to Rosalyn-helpline]

Please can I have Colin danials details please

[Rosalyn-helpline Partner in reply to WADDINGTON]

Hello Waddington,

Please either ring us or email and we can provide you with Colin's details:

0300 3030 111

[e-mail]

Kind regards.

[WADDINGTON in reply to Rosalyn-helpline]

Iv checked this email for Colin danials it not working can you send me a link please

[WADDINGTON in reply to Rosalyn-helpline]

Can you give me Colin Daniels email please im only 49 got amd

[Rosalyn-helpline Partner in reply to WADDINGTON]

Dear Waddington,

If you give us a call at the Macular Society Advice and Information Service on 0300 3030 111, then we can give you Colin's contact details.

Many thanks

[Hidden]

Sending you a hug x

The dye injection isnt a treatment, its just a test. Painless. Inj is in your arm, when dye gets to eye they photograph it. Everything looks a bit pink for a while after.

If you're having an inj in your eye that is usually the first of 3. They will be spaced about 4 weeks apart and are known as the " loading dose, ". It's really not as bad as you imagine. My tip is to take 2 paracetamol about an hour before and regularly after for 24hrs. Make sure eye isn't dry - use sterile drops from pharmacy and get another bottle to use after inj. Tell clinic you are nervous, want lots of anaesthetic and a good rinse after ( the iodine used can be irritant). Hold a nurse's hand! Breath steadily ( I count inside my head) and keep eye still (,they use a clamp so can't blink but you need to look where they say). It will be over quickly and once 1st done rest not so bad. Good luck going forward x

[WADDINGTON in reply to Hidden]

Thanks so much made me more steady. I was very scared my first treatment

[Hidden in reply to WADDINGTON]

If you're brave enough go on u tube and watch a video! I did and it really helped me - the one I watched was an American clinic so a few differences to uk but woman having the inj didn't flinch which convinced me.

There is a bit of a prod sometimes but it really shouldn't hurt. And after use the sterile drops lots which helps. I'm always a bit shakey just from the adrenaline so take it easy 24hrs. Vision can be blurry for a day or so but should clear. Come back and let us know how you got on.

[WADDINGTON in reply to Hidden]

I just looked on you tube it's well bad it looks sore. I'm a bit scared to be honest my first treatment according to my letter I could have a bad reaction but I no allegigic reaactions to nuffin I'm only 49

[Hidden in reply to WADDINGTON]

Everyone is scared first time, it's only natural. I was 54 when I started treatment, I felt too young too!

The bit about a bad reaction is probably for the dye test, that's why they have a nurse administer it so she can sort any probs. But very unlikely, esp if you've no allergies. I've lots of allergies and had no trouble.

Yes, you might be sensitive to the iodine they cleanse the eye with, but they can use an alternative, and if you get it rinsed really well and do it yourself at home too it should be ok. That's what probably looks sore on the vid u watched. Remember you get anaesthetic drops so eye is numbed. Did the vid person scream in pain??? I bet not.

Eye inj can temporarily raise eye pressure but they will check you can see ok before they let you leave.

They have to cover themselves with all the warnings, it's just like getting pills from the gp - if you read the lists in the box you'd never take anything!

Think about the hundreds of thousands of people around the world having these inj. They wouldnt keep having them if they were all terrible. I'm not saying they're nice, and some injectors can be a bit heavy handed, but if you use the drops etc etc there's no reason you shouldn't be fine

Focus on why you need the inj - if you don't have them things are likely to get worse. With inj things should stabilise and might even improve a bit.

My grandsons say I'm a superhero - scared but do it anyway!

Just let the nurses know how scared you are and they will look after you x

[WADDINGTON in reply to Hidden]

Thanks so much feel much better 😊😊😊

[schoolie68]

The dye injection is no problem, but does make you urine a funny colour! The eye injections can be uncomfortable, but generally the apprehension is worse than the actual experience. I've been having injections for over 10 years, the main thing is that I still have my sight! If you are going to Lincoln Couny Hospital, they have a great team!

[Lizjim]

I was so terrified at my first injection,but staff were lovely ,talked me through everything and reassured me ,I was amazed how quickly it was over, and while a bit uncomfortable,really painless .I have now had about 20 and while I don't look forward to them. ,I don't have any fear and know they are necessary to safe my precious gift of sight, Good luck

[WADDINGTON]

I'm very scared my first injection 13 th of January at Royal blackburn hospital very nice eye clinic but still petrified my first treatment

[ElviraKate]

I believe that if you have to have the dye rather than a deep scan of the circulation in your retina it may be a relatively good thing - I was told they would do the scan first to see if there was any anomalous blood vessel activity, and only if they couldn't see it on the scan would they do the angiogram with the dye. As it happened, it was well enough developed to see on the scan so I had my first injection immediately afterwards.

For the injection, deep breathing is the key, breathe in on a count of 4, hold your breath for 4, breathe out for a count of 8. This calms your heart and helps you be steady. The people who give it to you are immensely experienced and will help you. Ask for lots of anaesthetic and lots of rinsing out. You have to wait for 15 minutes or so for them to check your eye pressure then you can go. If you can persuade a friend to come with you it's at the end when they can give the most practical help.

[Janbeach]

Had the dye deal some years ago. I currently have wet macular degeneration in my left eye. I am 20/70 in it and 20/40 in my right eye. I can still drive, for now. I do have glaucoma in both eyes. I am 70 years old.

[Hidden]

This dye injection procedure (fluorescene angiogram) is very common and a very useful tool to identify eye conditions, I have had well over 100 over the years. The dye is injected via a cannula in the arm, the dye highlights blood vessels within the eye. The practice varies but usually nowadays, images will be taken before the injection, from 2 seconds afterwards and then a final set after several minutes.

The dye used for adults is orange and for several hours afterwards you will probably look as if you are sunburned!