Update on Eylea treatment: Last year I was... - Macular Society

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Update on Eylea treatment

bobpp profile image

Last year I was diagnosed with a type of wet macular degeneration in my left eye. I dont see perpendiculars as wavey but I do have a small grey area below central vision and within that area objects are not too clear.

I had 7 Eylea injections over the year the last one at the begining of Oct 2018.

A visit to my Optician in November confirmed that there had been and improvment and I was prescribed new reading glasses and distance glasses which I only use for driving.

On my visit to the hospital for a review I was able to read the entire logmar chart for each eye. I did struggle a bit with a couple of the letters when reading with my left eye. The optomologist showed me the photos taken of my left retina and all swelling had gone down the retina shape looked normal.

I have another review at the end of Feb 2019 and if all is well they may extend the review to three months.

Only two of the injections were slightly painful and to minimise the effect of the iodine the clinicians use a double diluted solution.

I hope this gives a bit of hope to people undergoing treatment or newly diagnosed with wet amd.

26 Replies

Good to hear you are doing so well

Thanks for posting this. I gives me hope that one day the Eylea injection I am getting in my right eye will improve my vision enough that glasses with a new script will allow me to see somewhere near 20/30 or 20/40. It would be a true miracle if I ever got to 20/20. Your post really cheered me up & made my day by giving me a new dose of hope.

bobpp profile image
bobpp in reply to Retired130

Hello Retired 130..my left eye acuity before injections was 6/12 which I think equates to 20/40 and it is now 6/6. Quite a remarkable change. The clinician told me that Eylea is a slower acting injection (compared to Lucentis etc) and that fewer injections would be required. It is not a cure but it does give a reasurance that sight can be improved. It remains to be seen for how long the improvement lasts. Wishing you all the best with your treatment.

I have a very similar experience to you bobpp; started mine last February and the last test was very satisfying, 20/20 (called 6/6 in the UK) in my good eye and just a fraction worse in the bad eye although I have a little vertical and horizontal distortion still. No real pain with the injections although a couple made me wince. All the worry when you first get diagnosed was misplaced. Very kind nurses here in the UK who allay your fears. Mike.

bobpp profile image
bobpp in reply to MikeG1944

Hello Mike. I agree with you about the shock of being diagnosed with amd. All manner of things go through the mind not least the thought of having an injection into the eye. The nurses are excellent in the North Devon Hospital and always make me feel relaxed as much as you can be given the procedure. We are fortunate that this treatment exists. Bob

MikeG1944 profile image
MikeG1944 in reply to bobpp

Yes, especially as those injections of Eylea cosy around £800 a shot.

RandyM profile image
RandyM in reply to MikeG1944

I am in the US and my Eylea injection in one eye costs 3X more than yours at $3000 each! I have insurance that covers it. Then the Retinal

specialist charges another $800 for injecting it, then another $300 for

the eye scan. I always wonder why the US is known for outrageous drug prices!

MikeG1944 profile image
MikeG1944 in reply to RandyM

We get ours on the NHS free, but if we had to pay I guess we wouldn't be able to afford it and we'd go without treatment. Also I think you'll find that as soon as the insurance companies have to pay the prices seem to double. It's like that with veterinary services over here.

bobpp profile image
bobpp in reply to RandyM

Hello RandyM.

The costs you state are eyewatering! They equate to £2,300 per injection at todays exchange rate whereas in the UK the same injection is approx £816. Thats a £1484 difference for what I assume is the same treatment. The pharmacy companies must be making a great deal of money from the insurance companies. Do people who can't afford the insurance and suffer from wetAMD have to face a loss of central vision in the USA?

Why can't the USA, (a rich country), adopt a State by State or Nationwide scheme similar to the health service in the uk?

Retired130 profile image
Retired130 in reply to bobpp

As for the costs quoted by Randy, in the USA, the doctors & drug companies bill the insurance companies a very high amount, but the insurance companies have worked out contracts with the drug companies & doctors so that they accept a much lower amount as full payment. So, it is more like a little game being played between the insurance companies & the drug companies & the doctors, hospitals, etc.. What the drug companies & doctors bill the insurance is really much, much higher than what they actually accept as full payment from the insurance companies. I don't know why they do this in the USA, but I suspect it might have something to do with the tax laws. As one example, my wife's heart operations & in-hospital recoveries & treatments were billed at just under $300,000 for the year, yet they accepted as full payment from the insurance company just under $100,000 & my wife's cost was $0.00.

Retired130 profile image
Retired130 in reply to RandyM

Hi Randy,

My wife is getting Eylea injections in one eye. We live in the USA in PA. I am stunned at the prices you listed. For each Eylea injection, my wife's costs are billed as follows: The Eylea drug itself = $1909.20, the doctor office visit = $183, the diagnostic eye procedure = $31.31, scanning & testing = $51.89, administering the injection = $129.35.

For the above, her insurance covers all but $450 of the Eylea drug & the doctor accepts a lower amount for all of the other items, so that my wife only pays a $15 copay. So her total out of pocket cost for an injection is $465. However, based on our income, she does qualify for an Eylea grant program that covers $445 of the $450 copay for the drug, so her final out of pocket expense = $5 for the drug & $15 for the doctor copay = $20.

I think you may be being over-charged & I suggest you check into it.

USA drug prices are usually higher than Europe for many non-generic drugs, but the USA does have some great insurance plans as well as plans that only cover catastrophic coverage with very high deductibles, so for USA citizens, it is basically what kind of insurance coverage one can afford; very good, good, or basic.

RandyM profile image
RandyM in reply to Retired130

Hi Retired130, I live in NC in the USA and I think a lot of these outlandish costs are regulated by the states we live in. But I agree, your wife's cost for the Eylea and my Eylea are quite a large difference as well as the scans, procedure, and exam! I am glad your wife gets a grant to help with the cost! Maybe because my Doc goes by the name "Retinal Specialist" that the costs are higher? I can't complain about him, because he gives pain free injections. I used to get Avastin injections from another eye doctor, but when I heard they were not FDA approved and the chance of infection was higher, I asked to switch to Eylea which is from a single dose vial. The cost of Avastin was only $50.00 because multiple single doses came from one vial alone which may have compromised the sterility of the needles. Hopefully the greed of the medical and Big Pharma industries will cease. I heard Mexico's prices are extremely low for the same medications and treatments.

Retired130 profile image
Retired130 in reply to RandyM

Hi. My wife's doctor who gives her the shot in PA is a Retina Specialist & in fact the office is called a Retina Eye Institute, so I do not think that is the difference. It may be a state issue, but I am not sure. We spend 6 months in PA & 6 months in FL, so my wife also has a Retina Specialist doctor with the name Retina Eye in the office name in FL. Her costs in FL & in PA are virtually the same with only a $10 difference.

My wife was also on Avastin for 12 months, one shot every 4 weeks. It was working well, but in June 2017 it stopped working & her eye problem actually regressed to as bad as it originally was over the course of the next 8 weeks (Avastin every 4 weeks) so she was immediately switched to Eylea.

The Doctor filled out an application & applied for the grant for my wife on his own. The application was processed by a group or site called "Eylea For You" that I think is operated by the drug company that makes Eylea. You should check into it plus ask your Retina Specialist if he/she knows about this & if he/she can apply for you. There are income limits to get a grant; somewhere in the $50K to 100K range. I don't know exactly as we easily qualify so I never bothered to check out what the max income is.

Yes, Mexico's prices for certain drugs are cheaper, but not all are available at a lower price in Mexico. The reason some are cheaper is that many drugs are actually made in Mexico, though people in the USA are not aware of this. For example, I am on a diabetic pill called Janumet with a USA cost of $1200 for a 3 months supply. My insurance copay is $75, but when I hit the Medicare donut hole, my copay goes to $600+. Until my friend who lived on the AZ/Mexico border moved & the US border patrol clamped down on meds coming into the US from Mexico ( I heard this was done on the request of US Pharma Companies), I could get the same 3 months of Janumet for $225 in Mexico in the exact same boxes, as it is manufactured in Mexico. This was several years ago, so I don't know what Mexican prices for this med is now, but I do know it is difficult to impossible to get Mexican meds into the USA now through the ports of entry. I no longer get my med from Mexico. US drug prices are higher because they are US patent protected so the pharma company that invented the drug can recoup its R & D costs, FDA approval testing & costs + make a nice profit for shareholders until the patent runs out & generic equivalents can be made by other companies.

RandyM profile image
RandyM in reply to Retired130

Hi Retired, I checked into the "Eylea For You" site you mentioned and copied it for my doctor to tell his patients. Thanks for the info about grants, which I probably would qualify for, so I am going to try other drug mfg's for my meds to see if they offer the same thing. My out of pocket prescription costs are very high. The insurance I have now will fully pay for medication ONLY given by a doc such as IV's or injections but not for other prescriptions that I buy at a drug store. My supplemental insurance is about $140/mo., plan F which has no co-pays or deductibles, BUT no drug plan, so I have to pay a lot for prescriptions. Maybe you could get a reduced payment on the Janumet medication if you contacted the Mfg. That donut hole is horrible! One of my friends is low income and she gets all her meds for free through her doctor! It is not Medicaid but another program. I didn't realize lots of USA drugs are made in Mexico and now Big Pharma got involved. It's no wonder folks can't afford medication anymore. Maybe the future will offer hope, but it doesn't look good so far...

I always ask for extra rinsing after each injection and when I get home I use Bausch + Lomb Soothe Lubricant Eye Drops (Preservative Free) and have very little if any pain from iodine.

StokeySue profile image
StokeySue in reply to rxtrxt

I’m given chloramphenicol (antibiotic) drops to use after my Avastin injections. As they are kept in the fridge, so cold, I find them very soothing

MacularAnn profile image
MacularAnn in reply to StokeySue

Good advice, will try that, I hope that all is going well for you

Kindest regards

Ann

THat is such great news. I am so excited for you to be able to breat a bit form the injections.

I live in British Columbia, Canada and my injections, etc. are all paid by our health care system. I did a lot of searching and found that Avastin is only $50 and a quote for Lucentis was $1600. They say both are equally effective. I've had injections for about 3 years now every 4 or 6 weeks. I was started on Avastin and then he switched to Lucentis. For the past year my vision has gotten progressively worse so I don't think the injections are helping anymore so have decided to quit going and see what happens! I have lost some central vision already. I also have a very severe reaction to the iodine wash which partly resulted in my decision to stop going.

Mimisea profile image
Mimisea in reply to tc68

Hi tc68. I'm truly concerned for your vision! You are on Lucentis but your vision is getting worse so you are going to quit treatment? WOW! You have lost some central vision already because you aren't being treated! Please google sevisionrehab.com and scroll down to "How Low Vision Looks". Notice the two simulations caused by ARMD. That is highly likely in your future if you aren't treated. Please don't give up! Talk to your specialist about switching to Eylea - many here (myself included) have had excellent results with it. In fact, within 8 months my wet eye was restored to 20/20! I am on an 8-week schedule now (it was every 4 weeks when I was on Avastin) and I take two Preservision Areds 2 softgels daily - a small price to pay for perfect vision vs. blindness.

I also had a very severe reaction to the iodine (I wish I could include a picture - it's really horrible!) so my specialist uses Benzalkonium chloride instead and I have had no reaction.

I hope my thoughts encourage you to do whatever you can to either restore your vision or at the very least, stop your progression. Prayers you make the right decision.

tc68 profile image
tc68 in reply to Mimisea

Thank you so much for your caring and concern. I was having trouble reading the guide on the TV so my kids bought me a larger one for Christmas. It helped a bit but I still had to squint a lot. I set all my shows once a week on my PVR and have noticed it was improving to the point where I can see it well this week. I had some "double vision" in my good eye after laser - something to do with new lens after cataract surgery going cloudy or something - he never really explained it well. I've been monitoring my "bad" eye - had already lost central vision when I stopped the injections - last one was Jan. 9. And the eye is staying the same. The last year of injections made no difference at all - vision stayed the same. I also have no idea what he was using - I know he started with one kind and changed to a different one as he said the first stuff wasn't working well. But I can't remember the name of either of them. I'll keep monitoring it and if it starts getting worse I may go back again.

Make sure you tell the nurses before your injection..about symptoms..

I always have to sit for about 5 mins after the dilating drops as very painful and would not be able to get back to the clinic if I did not,.

Best of luck Jo.

MacularAnn profile image
MacularAnn in reply to TenorJK

It sounds similar to me but the last time I could nearly cope with the examination and when I got home after injections I felt so poorly, so hope tomorrow will be better. Thanks for your post really thoughtful of you.

Hope all is going well for you

kindest regards

Ann

Thanks for the great news it is so encouraging, just wonderful news for you bet it’s great not having to go for injections for 3 months, keep well.

Kindcregards

Ann

bobpp profile image
bobpp in reply to MacularAnn

I am keeping my fingers crossed for a good review on the 27th Feb.

I have been getting the injections for over four years. I was told that there no eyeglasses that would help. My worst problem is that I cannot see much of anything that is black or dark, such as letters on black keyboard or a black car parked on the street at night if the street is not well lighted. Is this common?

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