Wet and dry AMD

[Argee]

I have wet AMD in my left eye and dry AMD in the right eye. I have been having Eyelea injections in the L eye at approximately 8 week intervals. Twenty one injections so far, and I feel sure that they have held back further deterioration.

However, my sight overall has deteriorated. I read on a tablet with the font enlarged using prescribed reading glasses together with a magnifying glass. Without the magnifier letters overlap, also figures - so that 8000 might be read as 800 etc.

Colours vary from L eye to R eye, covering one eye will see blue, covering the other eye will see green. Similarly, watching TV, heads/faces will be a different shape using just one eye or the other. I find distortion is greater with the R (dry AMD) eye than with the L.

Outside, vision is generally OK but slightly misty and low sun is a real problem, especially when going from sun to shade.

However, I manage, and now being in my late eighties I really sympathise with those who have problems at an younger age.

It would be interesting to know how many of you experience similar problems.

Argee

[mararay]

Argee I'm not sure if this is what you were wondering about but I have Best's Disease in both eyes and recently diagnosed with CNvM in both eyes though my Left eye was already 20/200 so they were giving me injections in my Right Eye only. I have had 3 injections of Avastin which didn't really help and then 3 of Eylea. Since I started the Eylea I now have floaters and my overall vision in that eye is now blurry where it hadn't been before...I mean I had blind spots from the Best's Disease but the blurry vision in the Right eye is new.

I also feel like there is a lace like faint haze in my R eye...almost like a net.

[Argee in reply to mararay]

Thanks for your reply. Sorry to hear of your problems which seem to be different from mine. Floaters can be quite common after injections but should disappear quite quickly.

If they persist I think you should tell your consultant.

Blurry, lace like vision, is I believe common in AND.

I do hope that your condition improves, and thanks once again.

[Ayralin]

Hello,

I have wet AMD in the right eye and have received Lucentis injections for just over one year. Yes, I do notice weird differences in my eyes. Color differences -yes! and, the right eye sees everything as distorted - people have "zombie heads" and shadow faces. Stars at night are seed as wildly colored starbursts with my affected eye. All-in-all, quite interesting, this visual show - a drug free visual psychedelic trip!

Linda

[Argee in reply to Ayralin]

Hello LInda,

It is at least comforting to know that I am not alone in what I see.

There are obvious similarities in what we see but I cannot say that I have seen starbursts! Skies must be clearer where you live. However, I'll look out for a starry night. Thanks for your post.

[Catseyes235]

I also was getting slight colour and shade differences with some shape distortions but your post prompted me to check and sine my other eye went from dry to wet macular and is being treated the differences seem to have minimised. I had put the distortion down to having had Thyroid Eye Disease with severe squint and ops for both conditions but may never know. I did notice today though that my right eye, the one doesn’t see wavy lines but still has shadowing of all the grid lines on the Amsler chart. If only I remembered to ask when at the hospital but just getting through the injection is enough!

[Argee in reply to Catseyes235]

Colour and shade differences and distortions seem to be common experiences. Also what you see on the Amsler chart.

You don't say how many injections you've had, but I think it gets easier in time.

Good luck.

[Catseyes235 in reply to Argee]

When I had shadowing 10 years ago (lines doubled and typed letters with ghost letters behind) I was sent to Moorefields as had had Thyroid Eye Disease and been treated there. They found nothing but gave me an Amsler chart to monitor things. When older brother developed AMD 3 years ago I got checked out as oldest brother was registered blind from AMD (developed pre injections) and all clear but 4 months later it developed. So have been havin injections in left eye 2+ years ( every 12 weeks). then dry in right eye turned wet last year and just gone to every 6 weeks. I put distortions down to TED strabismus and consequent operation but the more you read the more you discover and there seem to be a myriad of eye conditions which had never heard of!

[tc68]

Your problems sound very similar to mine. My left eye is the bad one. Had cataracts removed from both eyes shortly after I started injections in left eye. Right one still had 20/20 vision after that. But during a 6 week bout of coughing really hard I noticed my right eye had gone very blurry. He said something about the cataract and "fixed" it using laser. But after the treatment my vision improved - but was left with "ghosting" - I see a light grey word right behind a black word - like seeing its shadow. That has actually gotten a bit better after a year. There was no improvement in my left eye for the past year so I decided to stop getting the injections. It's only been 3 months (usually got one ever 6 weeks) and I see nothing getting worse. I had already lost most of my central vision and have a severe reaction after the injections so what will be will be!!

[Catseyes235 in reply to tc68]

Yep I get the ghosting too had done for years which I noticed more on the chart recently. Seems a shame to stop the injections - is that only in the one eye? Injections may halt further sight loss. What do scans show in terms of drying the condition? You don’t say what injections you were having. Eyelea was very effective in left eye but started on Avastin in right eye and much slower progress.

[tc68 in reply to Catseyes235]

I have no idea what drug he was using - I don't get a chance to really talk to him - he just did the injection - told me to come back in either 4 or 6 weeks and was gone! If I notice it getting worse I might go back - but not being able to keep my eyes open for the rest of the day and evening is torture. So I'll just see how it goes - the needles did nothing to improve that eye at all - it just kept getting worse over the past year.

[Catseyes235 in reply to tc68]

Can I take it you are not in the UK ..your treatment is appalling. Are proper scans being done each time. I have met people with AMD and only symptoms are picked up in a scan. It should not just be up to the patient to decide when they need injections. There are different treatments and some more effective than others. Please don’t give up but do find a specialist.

[Catseyes235 in reply to tc68]

Is this doctor a specialist?

You need to use lots of eye drops to keep your eyes lubricated and clean out any crusting. Are your eyes being cleaned thoroughly and washed well after?Iodine wash can crystallise and scratch your eyes. Very painful. Check out other posts regarding this.

[tc68 in reply to Catseyes235]

You're correct - I'm in Canada. Was being monitored for dry AMD every 6 months - then had a sudden bleed in left eye and started injections then they did my cataracts in both eyes. Great place - but moved to another province - specialist is 3 hours away - only one around to cover a huge area so very busy - does injections once a week and place is full of people all the time - so spends barely 5 min. with each one - does the injections and is gone to the next one. They do scan my eyes each time. Ghosting happened in the "good" right eye after he did lazar on it - it went blurry during a bad case of flu - I coughed for 6 weeks. But I've noticed it's been a year now and it has almost disappeared. So still have one good eye!

[tc68 in reply to Catseyes235]

I had a horrible experience with the iodine the first time I went to this new Dr. - eye swelled shut - woke up screaming in the middle of the night - sharp stabbing pain in eye - almost didn't go back. He said it was "just" a reaction to the iodine but insisted it had to be used! Things weren't too bad for a year but the last 3 needles by the time I got home that eye refused to stay open and the right eye closed with it - so had to sit for hours with eyes closed. It kept trying to blink and as so painful - tried to tape it closed but nothing worked - so I decided not to go back. Vision had kept getting a bit worse over the past year - had lost central bit already - everything is wavy in a circle. So decided to take my chances and stop going.

[Catseyes235 in reply to tc68]

Check out other posts relating to iodine as there is an alternative but it sounds like eyes not being cleaned properly after. Are you using eye drops to wash out and sooth eyes?

[Ayralin in reply to tc68]

Hello. I am concerned for you. I truly do understand the pain, discomfort and unpleasantness of the eye injections. I am a nurse and do understand the technical language in research papers. Taking your chances..... there truly is no chance here. Untreated wet AMD will lead to permanent blindness in the affected eye. Please reconsider the injections, so you can maintain what vision you do have.

Linda.

Minnesota, USA

[Argee]

You have obviously had some bad experiences. We share certain changes in vision in common,but I do hope that things get better for you.

Like me you accept what fate decrees.