AMD and Stroke

[Catseyes235]

I’ve had AMD and been successfully treated (left eye and then right in last year) with Eyelea for three years. I was having both eyes injected every 10 weeks. Recently however I had a mini stroke and am now having to wait another 12 weeks before a review is made. Has anybody had a similar experience and can people who have had a stroke be treated for AMD. As you may expect I have become quite depressed at the prospects.

[springcross]

Hi Catseyes. Yes I can quite understand how depressed it has made you feel, I'm really sorry to hear that. They may have to wait all that time to ensure you are well recovered before proceeding with the injections. You could always try the Macular Society Helpline for information, they are very good. The number is below. All the best and please let us know how you get on. Thinking of you. xx

Helpline on 0300 111 4000

[Catseyes235 in reply to springcross]

Thanks. I know I’m being impatient but I was due for my every 10 week injection and treatment was going so well. I feel guilty too that lockdown diet contributed to me having a TIA but actually when I look back my diet wasn’t that bad - mainly veggie but perhaps a bit more cheese. One contributing factor I felt was large scale demolition works across the road especially the continuous hum and vibration going through the house and brain from 8-6 Mon - Fri. With lockdown you can’t just get away from it.

Sorry .. yes I will phone the helpline as suggested.

[springcross in reply to Catseyes235]

Yes, that sort of work going on across the road would be enough to make anyone stressed, I know it certainly would have got me quite agitated. I hope you get on OK. Let us know how it goes. xx

[Catseyes235 in reply to springcross]

I’ve just had another appointment sent though from Kingston Hospital for the 5th August so fingers crossed !

[springcross in reply to Catseyes235]

Yes, fingers crossed 🤞. I hope all goes well for you Catseyes -keep us informed won't you? Thinking of you. xx

[maryparry]

Hi there, I can imagine how worried you must be. I would like to tell you that I had aTIA in 2002. I started eyelea injections in 2014. My understanding is that there is a small increased risk of stroke with eye injections. After my tia I was immediately put on aspirin ramipril and bezafibrate. This was to keep down my risk of stroke. ...so my answer is 'Yes' I am getting treatment and I'm fine and grateful. Of course your docs will make the clinical decision. Good luck

[Catseyes235 in reply to maryparry]

Thank you so much for your reply. I was feeling very depressed about all this because the Eyelea has worked really well . Do you have both eyes injected or just the one. I know I’m being impatient but my chemist talked as if Eyelea ‘just holds the condition n check’ as if I have to choose between having another stroke and going blind!? I haven’t even had a follow up with the stroke clinic. Do you think I should also write to the eye clinic stating which drugs I have been put on as I don’t see any other way they will know?

[maryparry in reply to Catseyes235]

Hi there, it started in my right eye, that stabilised and then it began in my left...which has now stabilised but it's back in my right eye...hey ho. it's a funny old thing.

[maryparry in reply to Catseyes235]

Are you in the U.K.? I am very surprised that you have'nt had a follow-up appt. at the stroke clinic. You might ring your GP for their advice. The eye clinic should check each time which meds you are onbut if they don't you tell them.Maybe write it all down and give it to the doc

[Catseyes235 in reply to maryparry]

Yes am in the U.K. but the stroke clinic at St George’s sends details to my doctor but no other clinics and certainly not for Kingston Royal Eye Clinic. (Even though they are linked) Quite honestly I didn’t think of the stroke/Eyelea connection when in George’s. There will be a follow up appointment at Stroke Clinic within 6-8 weeks. Yes I will tell the clinic what drugs I’m on. Thanks for you help and care!

[Catseyes235 in reply to maryparry]

I’ve just spoken to Rosalyn from the AMD helpline which cheered me and as we spoke I opened an envelope to find a new appointment at Kingston for 5th August so fingers crossed as I will also have had my follow up at St George’s by then! I hope your treatment goes well too - our sight is precious and I am so lucky to have perfect vision and no longer require glasses (Apart from reading) . Best wishes.

[Shimano in reply to Catseyes235]

Dear cats eyes. Can’t offer any information but sending good wishes and glad your appointment has come through. And yes, our sight is very precious. It’s good to have somewhere to share anxieties. All the best. Shimano

[Catseyes235 in reply to Shimano]

Thanks for that!

[Rosalyn-helpline Partner]

Dear Catesyes235,

Please give us a call to discuss this.

Kind regards,

Macular Society Advice and Information Service

0300 3030 111

[bloodshoteye]

Hi Cateyes, I'm just curious- did Eyelea actually improve your vision? My AMD has been 'under control' meaning not getting worse with Avastin, but it's still blurry in my central vision. I've been hoping for improvement, but my doctor says it's unlikely. I'm thankful it's not getting worse. Best wishes for your continued success.

[Catseyes235]

I think that if you have some central vision loss which I suppose is what you describe, it will only stop it from getting worse, but can’t make it better. When I started treatment my eyes had no loss of central vision just lots of bendy lines and distortion. What state were your eyes in when you commenced treatment? Maybe ask your doctor why you are not receiving Eyelea ? Btw are you in the states?

[bloodshoteye]

When I first went in to the doctor(1.5 years ago) I had the bendy lines and distorted spots, which I still have now. I've been getting shots at first every month, now every 3 months with monthly scans. I guess I can only prevent the damage from getting worse. Yes, I'm in the states. I had Eyelea the first time, my doc thought Avastin works just as well, and since I have a high insurance deductible the cost is a factor- Eyelea is $1,200. and Avastin is "only" $310.

Our healthcare system is terrible(unless money is not an issue), you folks in the UK are so lucky to have national care. Thanks for writing back.

[LB1st in reply to bloodshoteye]

Have you checked out the EYELEA4U program? It could help you with costs and your doctor should be able to provide you with that information or you can check their website.

In regard to health insurance, if you are private paying, there are many affordable choices and, in my area, Medica has proven to be a good company in accordance with The Affordable Care Act. It would certainly be worth making a call.

Best wishes.

[bloodshoteye in reply to LB1st]

I do get a credit from the ACA and the state of Oregon, so my monthly insurance is less, but I still need to meet my $7900. deductible before it pays anything. My insurance is PacificSource, my insurance broker did not mention Medica as an option here in Oregon. I did research comparing Avastin and Eyelea initially, and statistically they both seemed to have similar results. I would not gamble on Avastin if I knew something else worked better-- I would pay more for better vision. I assume you have had good results with Eyelea? ( I hope so!) I will check into Eylea4u, Thanks for the tip!

[Catseyes235 in reply to bloodshoteye]

Probably the advice given by LB1st is of more use to you. However you shouldn’t still be getting wavy lines surely if it was working . We start with every four weeks then 6, 8, etc. Also to qualify for Eyelea depends on how far you can get down a reading chart which is ridiculous as has little to do with with the distortions . As you say I am so lucky to be in the U.K.

[bloodshoteye in reply to Catseyes235]

Yes, the letter chart is not a great indicator of vision decline. I think I'm good at guessing letter forms since I worked with typography for 40 years as a graphic designer. Even if the E looks like a B, and it looks wavy, I probably guess it right. (Just hoping my good eye with dry AMD doesn't go bad!)

[Catseyes235 in reply to bloodshoteye]

I was told by my eye doctor in no uncertain terms DO NOT GUESS THE LETTERS!! Only report what you can clearly see. We try to please but it is doing us no favours! For a while I was having Eyelea in one eye and Avastin in other and could really ‘see’ the difference.

[Shimano]

This is really interesting cats eyes. I am on avastin and my wavy lines are exactly the same as before though they have stabilised. My right eye is good so can read chart ok with that eye but not with the left wet eye. A,ways assumed my wavy lines could not be reversed.

[Catseyes235 in reply to Shimano]

No I have no wavy lines at all as long as I have my treatment. I was due to have injections this week and I know that wait will set me back again. I had Avastin a couple of times when my right eye started having AMD and I have to say it was not as effective but that’s for me, I can’t speak for others.

Surely the price of Eyelea should come down as more use it.

Are you in UK as using Eyelea has to be according to NICE guidelines ridiculous as they are - doesn’t take the wavy lines into account,!!