Has anyone here had EYELEA injections for macular degeneration?

9 years ago

I have been getting Eyelea injections for several months now. The first three are normally given a month apart and the next three are to be two months apart. I've had four in one eye, two in another. In my opinion, they have not helped at all...ifn fact, I think my vision has gotten WORSE with each EXPENSIVE injection. I know there is a HEALTH board here, but I mainly enjoy coming to the KT. I'd love to hear anyone else's experience. And, thanks!

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9 years ago

Yes, Redcurls, I've received Eylea injections and I can't say that they made my sight worse...but...I stopped the injections well over a year ago. I either had an bad reaction to the last of nine shots...given every thirty days contrary to manufacturer's recommendation...or the doctor giving the injection scratched my retina and elected not to own up to what he'd done. Either way...I will not volunteer for any more injections. The entire experience for me was dreadful which may have been due to the actual clinic itself....assisted by the fact that they never succeeded in desensitizing my retina so I always felt the injection.

I have wet macular degeneration in my left eye. The first few Eylea injections succeeded in stopping the bleeding of the blood vessels and my sight improved. Then, because no one had warned me not to, I went back to taking my 80 mg aspirin every day that I'd been taking for many years on the advice of my GP. My eye took a nose dive. The bleeding returned and I spent the next few months trying to stabilize my vision. The injections were successful to a great extent but my vision will never been completely unimpaired ever again. I'm very lucky that my impairment now is only a small, light grey cloud rather than the initial complete blackness. And, also, fortunately, my right eye remains unimpaired.

When I refused further injections, the doctor threatened that my improved eyesight would rapidly slide backwards. It has not. I take OTC Lutein...40 mg/day...and find that, if anything, my eyesight has improved with this intake. And...no more aspirin...ever again. Getting enough sleep and trying to keep stress out of my daily life has also helped.

Personally, I have very serious doubts about the medical advisability of multiple Eylea injections. I feel that the nine injections given to me were not all necessary and the retina clinic issuing my injections was abusing the system.

I'm a senior on Medicare. The cost of my shots was completely covered by Medicare and what little doctor application involvement that wasn't covered was picked up by my supplemental insurance coverage. I'm very surprised that your post indicates that you must pay out-of-pocket for the Eylea....but...I don't know if you're a US citizen or from our neighboring [and beautiful] Canada where your insurance coverage may differ.

I'll end this contribution by offering that I am not a fan of medicos on any level. I've had too many bad experiences to reverse that opinion...including the Eylea application. But...it was helpful in the beginning and if I ever had a recurrence, I would consult a different specialist for advice.

I hope your experience becomes more positive. It's very frightening to lose ones eyesight....especially at my age and living alone.

Anne

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Comments (7)

Rudebekia
9 years ago
I have myopic degeneration in one eye and have, in the past, had series of Avastin shots as needed. They have worked well. Last year about this time the eye went bonkers again and I needed only about 3 shots to bring back my best sight. Myopic degeneration is similar to macular degeneration but not age related. And yes, each treatment is enormously expensive as is the every couple month screenings I regularly do. Once I reach my out of pocket maximum, however, insurance pays for the rest. Have you tried Avastin?
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redcurlsfl
Original Author
9 years ago
Thank you for your wonderful post, Anne. No, I do not pay for most of mine out of pocket...I am on Medicare as well. However, with so little benefit, I question whether Medicare or my supplementary Blue Cross/Blue Shield should be paying thousands of dollars. Normally it only costs ME about $80, but right now I had not yet made my Medicafe deductible for the year, so it is about $150 more than usual. I think with new treatments, they all like to rush on to the bandwagon. I have not been offerred any other treatment. Perhaps I should ask since these are definitely not working.
dee_can1
9 years ago
Have you ever thought of taking Lutein supplements? My father, who is in his 80's, started taking Lutein and is noticing a big improvement in his eyesight. I think he takes something else, too, and after I talk to him, I'll post back.http://altmedicine.about.com/od/completeazindex/a/lutein.htm
User
9 years ago
Here's another website [below] with more treatment info included in it. Perhaps, Dee, you're thinking of OTC AREDS. It's the latest and if I could tolerate the Vitamin A and Zinc that's included in the pill formula...I would give it a chance. Unfortunately...I have one of those overly sensitive physical symptoms and after a few days of the use of AREDs...I had an unhealthy reaction to it. I was a smoker in my younger days and am unable to tolerate Vit. A...but beyond that...I've never been able to tolerate Zinc. However...that being said...I did have a brief positive sight reaction to it. The AREDS formula includes Lutein. And...returning to the straight form of Lutein has continued that improvement. I'm about 5 years behind your father in age...and I agree with him. Lutein is wonderful. And...from the looks of what manufacturers are putting on the market these days...I think someone has finally discovered the same thing. Provided the user doesn't have any allergic reactions to the contents...it's also the safest, least invasive form of treatment.

http://www.webmd.com/eye-health/macular-degeneration/age-related-macular-degeneration-overview
User
9 years ago
I had written a much longer informational post, Redcurls...but it disappeared into thin air. LOL The gist of it was...IMO...to avoid any type of laser treatment if you do go looking for another form of treatment. The laser actually kills the spot that it's directed at and eventually...after enough laser-ed spots...the retina will be dead/scarred and useless. You will have been blinded by the treatment. Personally...I think it should be banned. Also...Avastin and Advantis are what are referred to as a cross-over drugs. They're both cancer/chemo drugs. I believe Advantis has been discontinued as a macular treatment. So...be very careful about what you decide to do treatment wise. The market is flooded with new "ideas" and one really has to be on ones toes these days.

Anne
dee_can1
9 years ago
last modified: 9 years ago
The Lutein my father takes is from a quality supplement from the local health food store. It is lutein from marigold flowers, along with zeaxanthin from marigold flowers.

Has anyone here had EYELEA injections for macular degeneration?

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Has anyone here had EYELEA injections for macular degeneration?

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