? length of time until improvement seen? - Macular Society

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? length of time until improvement seen?

rosyG profile image
20 Replies

Can you remember how long it took until your injections (I'm having Eyelea) seemed to cause vision improvement? I am getting stressed as central oedema returned after break of 10 weeks in injections and I had an injection 10 days ago and no difference yet!! Impatient I know!! Also wondering- they have given me an appointment for injection in 8 weeks time and wondering if this should be sooner if no improvement occurs??

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rosyG profile image
rosyG
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20 Replies

Hi rosyg, sorry to hear you're so stressed. Sending a hug x

For me I always saw some improvement ( eg when reading missing letters appeared but straight line could still be wavy) within a week.

I think where your oedema is will affect how much/ quickly you see an improvement so I'm not sure comparison to others will be that helpful.

I can't recall now but there might be a minimum gap between eyelea inj as there is with lucentis. Best to ring your clinic if you have any concerns. Good luck going forward x

rosyG profile image
rosyG in reply to

thank you Eyesright- will do!

Hello rosyG

Unfortunately there is no set time when the injections should work. It all depends on the amount and the speed of the accumulation of fluid, which can vary after each injection In my case the injections have always worked very quickly except for the last time, when after a break of 4 months I was told the fluid was building up again. Within 3 weeks, while waiting for my injection, I noticed massive distortions even when I looked at items with both eyes despite one eye not being affected with wet AMD. My vision was suddenly down to 20/90, but despite my visit to E&A I still had to wait another week. Now, 3 weeks after the injection the distortion has eased more or less to what it was before, so clearly the fluid is in the process of drying up, but my VA is still 20/90. Hope the damage is not permanent. So you see, no one can predict how soon to expect improvement.

Yes, be patient, Rosy. Sometimes it takes another injection before you begin to notice a difference. Sending you my best wishes x

rosyG profile image
rosyG in reply to

Thankyou Ayayay

Very wise!

Hope you get further improvement

in reply to rosyG

Just to add, rosy, it beats me how the injections are spaced out. I had anything from 4 weeks to 2 months gaps apart from a 4 and a 5 months break. The specialists must go by past history - on how your eyes responded in the past. And sometimes they get it wrong. So yes, if you are concerned do phone your consultant's secretary.

Bobbie915 profile image
Bobbie915

Hi RosyG, My hospital say that they will not give Eylea injections unless it is more than 28 days since the last one.

Wishing you well and quick return of your sight.

Ayralin profile image
Ayralin in reply to Bobbie915

I was told - insurance/Medicare will not pay for injections closer than every 4 weeks [28 days] - in USA.

No2020 profile image
No2020 in reply to Ayralin

That may need fact checking. I understand that any of the meds used should not be injected closer than 4 weeks.

rosyG profile image
rosyG in reply to No2020

you are right- there must be a 4 week interval My problem is getting appointments and when I rang was told I have to go through A and E!!

pinkperfection profile image
pinkperfection in reply to rosyG

Yes my problem is getting appointments too. Had 3 Eyelea injections then scan last week which showed fluid was still there. Then told I was overdue for next injection but still cannot get one scheduled and now entering Seventh week!! I am so frustrated and worried That my sight will be further damaged.

Ayralin profile image
Ayralin in reply to No2020

And that is why insurance won't pay for it if a shorter interval.

arwmd profile image
arwmd in reply to Ayralin

Correct!

Ayralin profile image
Ayralin

Hi, rosyG,

My understanding is that this is an ongoing, for the rest of our lives treatment. Here's what I have seen since March 2018: Fluid leak, get an injection, recheck in 4 weeks. Slowly some vision improvement - recheck - if there's fluid, another injection. IF no fluid, they skip the injection, recheck in 4 weeks. If I have 2 sessions needing no injection, then recheck in 6 weeks.......on-and-on.

I have NEVER seen a return to vision that is pre-AMD quality. I still see some waves of distortion when I peak in vision quality - my eye doc says that is caused by the ripple or buckling of the retina that was caused by the past fluid pushing up on the retina. It may be permanent, it may improve.

My vision changes began with the wavy distortion, then a dark spot. Diagnosis took them 3 months as I did not have all the expected symptoms. The first injection made the black spot clear into a sort of light fog that I could see through. My other unaffected eye struggles to balance the vision - and I see double all the time, with the affected eye always being a bit blurred through that fog. The wavy distortion has never gone away or improved.

As the fluid begins to leak, the fog darkens a bit, and the vision gets more blurry.

I find - I can't drive at night, because the double vision makes it hard to determine how many cars I see ahead of me. I also have lost much depth perception, so parking is difficult and I have to take more care. I avoid city driving with any sort of traffic due to the depth perception - I can't judge the closeness of cars for merging, etc.

So my understanding is that the injections attempt to prevent further damage, give some improvement, but I won't ever return to any sort of pre-AMD state. Before injections, we all would have progressed to blindness - so I have to be happy that we have these medications!

How has other's vision changed? Is my experience similar to others? - I am guessing we each are different!

Wishing everyone positive results!

Linda

2468G profile image
2468G in reply to Ayralin

Hi Linda

I can relate to a lot of what you say. I have CNV. Lots of distortion and the awful double vision that bothers me, sometimes more than others. I have a curve shape just below my central vision in my affected eye where i have lost some vision. A consultant told me it was scarring.

I too no longer drive at night and dont use the motorways. Prefer familiar routes.

I was told by my consultant that I would be 'kept an eye on' for 2 years but when I asked a nurse how long she thought i would need to attend clinics for she said I would need checks forever, so i think you are correct in thinking it's ongoing for the rest of our lives.

I agree that we have to be grateful that there are medications to help us. Best wishes to you.

Bobbie915 profile image
Bobbie915

Interesting post, Linda. I am amazed that you are still driving!! You must have quieter roads where you live than we have. In UK you have to be able to read a car's number plate 20 metres away to get a licence.

Best wishes

Ayralin profile image
Ayralin in reply to Bobbie915

I passed the eye test in August. Reading their chart without glasses. My left eye is not affected by AMD. I use common sense when driving as I know my limitations. Stick to quiet roads, avoid traffic, park away from others, no night driving and generally pay close attention. I am guessing I.will not be able.to drive if I fail the eye test for my license or when the eye doctor tells me to stop.

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear rosyG,

The function of the injections for wet AMD, and related conditions, is to suppress the abnormal blood vessels developing behind the retina, stabilise the eye, maintain vision and prevent further damage.

With Eylea, an initial loading dose of 3 injections is given, once a month for 3 months, then the eye is reviewed. Subsequent injections are eight weeks apart in the first year. In the second year, the time between injections can be varied.

Although the injections are aimed towards maintaining as opposed to improving vision, sometimes individuals report a slight improvement within the first 2-3 injections.

It may be wise to contact your ophthalmologist via their secretary to discuss any concerns in terms of your treatment regimen or its impact.

Please do not hesitate to contact us if you would like to discuss this further.

Kind regards,

Macular Society helpline

0300 3030 111

arwmd profile image
arwmd

I guess everyone's experience is unique. I was diagnosed with wet macular degeneration in 2011, and have had an injection in one eye every 28 days since. After 2 1/2 years the RS gave up on the left eye so that one has not been treated since 2014. The right eye vision fluctuates - sometimes better than others. So far I can still drive on my little island just not in heavy traffic or from dusk to daylight. The main thing is - stay positive. The expectation by health care professionals is that you/we will be or are depressed about this. But take it from me (if I can be so bold) you can figure out how to compensate by taking stock of what you can still do without assistance first. Take pleasure in those things. Then it is easier to determine what you need help with. Just the other day I realized that I take products back to the grocery store often because I can't read the very small print on contents of packages. I have now the challenge to figure out how to compensate for for that (slow down?, glasses plus magnifiers?). In addition, for example, my eye gets very tired reading and because I enjoy reading and company, I asked my yoga class for people who enjoy reading aloud. Two volunteers come to my house every week to read to me. They have been coming on different days now for 5 years and we have become very good friends. One of these ladies is well connected here, politically, so I asked her if she would get the Senior Center to set up a group for low vision people to meet there once a month to share information for low vision people about the latest technology , injections, infections, medications, eye drops, basically all the topics that can be found on this website. Through the County, they hired a social worker to facilitate this group. She engages speakers, organizes field trips, and in general facilitates the group's interests,

However,we set the agenda. As an example, for the past several months I have been wearing Bose Hearphones. At the last meeting, someone asked me about them. Seemingly dumbfounded, we hesitated, looked at each other, before almost everyone admitted to having a hearing deficit too - which, if you think about it, was pretty funny. We had a great laugh . There is another value derived from a group. Because we have an opportunity to talk about our issues in depth with those who thoroughly understand, we have no need to obsess about it with our families.

rosyG profile image
rosyG in reply to arwmd

Well done for getting so organised!

arwmd profile image
arwmd

Greetings rosyG My own experience with eyelea injections is leakage occurs if the time between injections is more than 28 days. By about day 24 I start to notice a deterioration of vision. I know that for me the disease is progressive so the injections are slowing that progression down not curing the disease. But using the eye drops in between injections does help. To avoid stressing about it I found someone who likes to walk everyday or I go swimming.or just any kind of exercise with people. My RS told me a couple of months ago he is doing clinical trials on three new drugs for macular degeneration, one is at the approval stage now. It will take the gap time to 8 weeks. It sounded like it should be on the market within the next couple of years. The other thing about my case that may be uncommon is that macular degeneration has been in my mother’s family back to her great grandfather without skipping a generation. Still you aren’t prepared for it. What is in my control is the stress. I recommend finding something active to do for an hour or two each day. If you find something I would’ love hearing from you.. by the way I am 88 so if I can you can too!

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