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Turns out silicone lubricant is the culprit!

I posted recently about a bubble in my eye following my last injection of Avastin.

The bubble, which appears as a heavy black ring with a gold center, moves all around

in my field of vision, and has been very annoying indeed for about a month now.

I went back for another shot today. The doctor confirmed that it is a drop of silicone lubricant from the hypodermic needle used in the injection. He said it will not go away, but might sink down low enough eventually to be outside of my field of vision.

The only way to remove such bubbles is by surgery. The viscus is removed, and replaced with water he said. I guess I'll just live with the bubble. He said the quicker the medication is injected (meaning the needle is removed in a split second) the more likely the silicone can get in the eye and cause this problem. He was slower today. It hurt more, and gave me quite a bloodshot eye. But there is no additional bubble.

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The following statement is from one of the present class action lawsuits: "Many compounding pharmacies (for Avastin) use syringes that are intended to be used by diabetics for injection into the skin. In many cases, both the barrel and the needle of the syringe have been lubricated with silicone oil. Such lubrication may be suitable for skin injections, but not for eye injections."

I have had 14 injections for wet (blood) AMD so far. The first 8 were with Avastin and all without the month long bubble that you describe. My new ret doc (U.S.) switched me to Eylea for the next 6 because she was not satisfied with the Avastin results. When you read the possible side effects of all 3 drugs used (Avastin, Lucentis & Eylea) you hope that none of the side effects for you will be of the serious type.

It seems from what you say is that your doctor is at fault. You should not be adverse to getting a new one. The skill and technique of the injector is everything. I switched and no longer have pain, a bloodshot eye and have go to bed for the rest of the day. Please google: "eye injection silicone lubricant" for more information including class action lawsuits.

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Thanks, kevinaki. I am thinking about trying another doctor. This is the first time the injection has given me a bloodshot eye. But the permanent silicone bubble is most disturbing.

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What I need to find out is whether or not there is a source available to doctors in the US for Avastin injection apparatus that is not lubricated with silicone lubricant. Is the doctor (and the group to which he belongs) using these prepackaged silicone lubricated hypodermic set-ups (or whatever you wish to call them) because they are cheaper, or because that is all that is obtainable? That is the question to which I must find an answer.

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Thanks for posting this. I think I shall ask my clinic for confirmation that they use the correct needles!

I wonder if the macular society are able to do a ( UK) country wide request for information on behalf of all of us?

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Hello Jihm,

I am sorry to learn about the cause of the bubble in your eye.

I have to say, that we have not come across the 'silicone lubricant' problem before on the Macular Society helpline.

We speak to and respond to emails and forum posts from over 1,000 people every month so I am not sure how big an issue this is.

If you want to go further with this, I recommend that you find out what the complaints procedure is at your hospital and follow it through.

If you would like to discuss further, please call our helpline, 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

Best wishes

Macular Society

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I am in the USA, Macular_1, and this problem with the silicone lubricant getting into a patient's eye with the Avastin injections is fairly common here. The hypodermic apparatus for the Avastin injection is plastic - at least it is here. It is lubricated with a silicone lubricant.

Other medications come in a glass apparatus, and do not require this silicone lubricant. So, this problem may be relegated to Avastin injections only. I have seen

posts on this board from patients who describe a disc or ring with color in the center

moving around in their eye after an injection. This is exactly the way a silicone bubble

appears. However, if it is silicone it would not just "go away" after some period of time,

unless it sank down in the eye below the field of vision.

In the US, most people do not receive injections in a hospital. Instead, they are received in doctor's offices. As you probably know, here conservatives currently

are in power, and firmly resist "single payer" national healthcare . It is still the "wild

west" in many ways. Anything to make a "buck" (meaning a dollar) still is the prevailing ethos. (If that statement is too "political" for this board, please remove it and and I will refrain from such in future.)

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This is a very big problem in the USA. Genentech, the maker of Avastin, does not manufacture or supply prefilled syringes with Avastin. Rather, it is compounding pharmacies—some of them quite large with a multistate distribution network—who purchase vials of Avastin and prefill the syringes with the drug and ship them frozen or refrigerated to the ophthalmologists.

Unfortunately, many of the compounding pharmacies have been using plastic syringes (usually diabetic syringes) that are coated with silicone and which were not designed or approved for injection into the eye.

When silicone freezes, it becomes a solid.

The unfortunate result of these actions by the compounding pharmacies is that many patients are getting Avastin contaminated with silicone particles injected into their eyes. Some of these silicone particles are being injected into the eye as solids. Whether solids or as silicone microdroplets, these contaminated injections can cause further vision problems.

Of course, in the US, this means many lawsuits: spanglaw.com/blog/2017/apri...

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Hi again Jihm,

You will appreciate that we are a UK based charity.

No problem with you putting posts on the forum, but perhaps we need a way to establish where people are!

Best wishes

Macular Society

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Right, Macdular_1. Thanks. I have not found a similar forum here in the US. I'm sure they must exist. But, for some reason, this forum was easy to find. I am 75 years old, and not very computer literate. The whole digital world rather puts me off.

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They do not exist! This UK forum is the best!

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Thanks for that information, kevinaki!

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Thank you for existing then.

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Wonderful that this discussion support group exists! I am also in the USA. I have not found anything like this in the US.

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Hello Jihm. So sorry to hear of this problem you have had on top of the other eye problems. Must be very distracting and worrying.

We in the UK are very fortunate to have the NHS.

Best wishes to you.

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Thanks very much, 2468G. These bubbles certainly are very distracting, and a constant reminder that something is wrong. I agree. You are fortunate indeed to have the NHS in the UK. Things in the USA are rather surreal at present as you probably know.

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Hi Jihm. Just been reading your other posts. The vitreous removal to get rid of the bubble sounds scary too. Makes you wonder about any side effects of that also. What a choice for you.

My best wishes.

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And for thousands of other as well, 2468G. For now, I will do nothing - just put up with the bubble. Thanks for your well wishes.

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The removal of the vitreous within the eye, vitrectomy, and its replacement usually with saline is a very straightforward and well tolerated procedure. It takes around 25mins and is commonly done under local anaesthetic.

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Interesting! Thanks. Rennatk. The bubble seems to have finally sunk below my field of vision. So, I will let it be for now.

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The following site, like some others, gives a good explanation of the Avastin permanent silicone floater problem:

topclassactions.com/lawsuit...

You might also see if any of these locations are near you. I'm being treated at #4 :

health.usnews.com/best-hosp...

Lastly, it's up to you to save your GOOD eye:

macularsociety.org/sites/de...

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Thanks for the links and your concern, kevinaki. I am in Taos, New Mexico - "too far from heaven, and too close to Texas". Taos is in the north of a very large state. None of

these preferred hospitals are within reach by auto. I have been aware of the nutritional information for years. I do take the recommended vitamin formula every day. The Avastin lubricant problem still persists - in this country anyway.

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UNM Hospital

2211 Lomas Blvd. NE

Ambulatory Care Center, 1st Floor

Albuquerque, New Mexico 87106

505-272-2553

Specialty care for diseases of the RETINA and cornea

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Thanks, kevinaki. Good to know it is there.

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Apparently the silicone oil can be removed...

aao.org/1-minute-video/remo...

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Thanks much for this video link, kevinaki. I do not understand the medical terminology the narrator used - but I get the general idea I think.

The doctor I have been seeing said that the vitreous is removed along with the bubbles, and replaced with water. It seems to me it would be simpler if the Avastin

hypodermic apparatus was made of glass, instead of plastic, obviating the need for the silicone oil in the first place. But then the company that makes and sells them might see a decrease in profit, and the company CEO become unable to buy the latest Porsche he "had his eye on".

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This should NOT happen. Presumably, the drug is being “cut” from a bulk sample. The normal shot is via a non-siliconed needle.

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Please explain further, Rennatk. I am not familiar with the term "cut" as used, nor do I understand what a "bulk sample" is in the context of the pharmaceutical industry.

My understanding is that Avastin is mainly sold for other medical purposes that are unrelated to vision, and, in the US anyway, its use in macular degeneration is a sort of

misuse technically according to the FDA - which (supposedly) oversees medications in the US. This problem of silicone getting into the eye from an Avastin injection is common in the US.

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I could not think of a better term than ‘cut’ but it was meant to indicate that a larger ampoule of Avastin is split into the tiny amounts needed for use in the eye, here in the UK that is 0.04ml. A recent study BTW showed that slight overdosing, common when the syringe is filled by the clinic, was not a problem. Only a very small percentage fell below the correct dose.

Avastin is a long existing “standard” anti-cancer drug largely used in the treatment of bowel cancer.

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Also, is the implication that Avastin hypodermic apparatus without silicone lubricant is available to doctors in the US? That is the main question I need to research. If the doc I have been seeing is just using the prepackaged plastic silicone lubricated hypodermic

needles to save money, then I hope he is run over by a garbage truck ASAP.

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Never heard of this. It sounds literally too good to be true.

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Good for your dad! Cataracts are not my main problem.

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Avastin is a very expensive CANCER drug. Compounding labs buy it from the drug manufacturer, repackage a tiny amount for wet AMD eye injections and then sell it to the provider (clinic/hospital/doctor).

Although, they have recently changed their practices, some of these compounding labs were placing the drug into plastic syringes (sometimes diabetic syringes having silicone oil) that were not intended for retinal use.

Lucentis & Eylea are distributed directly to the provider (clinic/hospital/doctor) without going through the "middle man" the compounding lab.

All three drugs (Avastin, Lucentis & Eylea) treat wet AMD very effectively. Their most significant difference is cost. Lucentis and Eylea cost approximately $2,000 and $1,850 per dose, respectively. Avastin? Only $50.

The following is a good explanation of your silicone oil problem, please read it carefully. Class action lawsuits are against the compounding labs, not the provider (clinic/hospital/doctor).

johnsonbecker.com/drug-inju...

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Thanks, kevinaki. I knew most of that, and did sign up on one of the class action lawsuit sites this morning. The thing that I am unsure of is whether just having a silicone bubble in the eye actually does pose a serious risk to the eye - or whether the folks promoting the lawsuits are exaggerating the risk (beyond the obvious annoyance the bubble causes).

I contacted a competitor this morning - the only in-state competitor of the place where I have been getting the shots. I spoke for a long while to a tech who talked to a doctor, and their medication procurer - while I was still on the line.

They claim that there is no silicone lubricant on the needles of the Avastin shots provided by the compounding pharmacy they use as a source. I also learned that many patients wait as long as 4 hours just to see the only doc there who gives the shots.

At the place I have been going, I have been getting in and out of there in half and hour to 45 minutes total every time.

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jihm, Do you have a silicone floater? If you do, I would have to assume you got it from the injections.

Many doctors don't even know silicone is on the injections they order.

I did some research on the silicone problem and am considering legal action. Since Avastin, I now have an irritating floater in central vision of my eye. It is permanent. I read that the silicone stays in the eye permanently and can only be removed by suctioning it out with another injection then fills the space with another liquid. If I would have known there was a risk with Avastin, I would never have allowed it. I now get Eylea from a new Retinal specialist, and I get in and out in less than an hour as opposed to 4 hours with my previous doc. With the Eylea I never get the large black discs floating around for 3-4 days from the Avastin injections.

Please post if you learn more about this issue and I will too. Thank you

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I do have a silicone lubricant bubble in my eye, Randy. After much research of my own, I think I have learned more about this issue. Apparently there are various types of syringes. Avastin typically, in the US anyway, comes in "steak-on" (or "steaked-on")

syringes, whereas Eylea typically comes in "Luer Lock" syringes. The largest manufacturer of all the various types of syringes in the US uses silicone lubricant on ALL of them. The syringe itself is what makes the chances of getting silicone into the patient's eye different. On the Luer-Lock syringes the lubricant has far less likelihood of getting onto the needle itself than with the "steak-on" type.

I am switching from Avastin to Eylea for my next inj. I hope it works on my wet macular degeneration. And I hope the information about the syringes is correct

and up to date. I cannot swear to that, as I am no expert!

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Hi again jihm,

I am in the US too and now getting the Eylea and changed docs. Thank you for all the information you gave on this forum regarding the silicone.

Now I wonder if you would explain how the doc diagnosed your "bubble" being from the silicone? Is there a test they do? If so what was it like?

I think I would have to prove my permanent, irritating "bubble" in the center of my vision is from the silicone. I had about 8 Avastin injections.

Please let us know how the legal action is coming along.

If I would have known that I could have gotten an FDA approved eye injection such as Eylea, I would have refused the Avastin.

Eyesight is very precious and the medical profession should avoid anything with a risk to eyesight. I hope all turns out well for you and that the Eylea injections help you.

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Thanks, Randy. The persistence of the bubble (a month or more, at that time) made me know it wasn't just air. I went to a local eye doc for an exam, and he spotted it. Then I went back to the doc who does my injections, and he saw it too, and recognized it as a silicone bubble. There was no specific test. He did offer that he "could remove that bubble" - but I do not want surgery. I don't know how any of the law suites are doing. I contacted one, but never heard back. The lawyers seem to be interested only in people whose eyes have been provably physically damaged by the silicone - rather than people who simply have an annoying bubble of silicone in the eye. But I am not even sure of that because haven't followed the suits at all.

Hope that bubble moves out of the center of vision for you! Mine moves all over the place, by the way.

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Hi jihm, You are right about the lawyers

interested only in people whose eyes have an injury such as

retinal damage, increased pressure, blindness, etc. One law firm seemed interested but when I filled out the info, I saw that they wanted to know

if there was a sustained injury of some sort. I am sure I have a silicone bubble because mine has been there for months now and, like you, it is irritating and moves around. It seems to bother me most when it is in my central vision and blocks out text or blurs it considerably. I'll let you know if the lawyers want my case, and if so, you can file with them because your symptoms are like mine.

Thanks for keeping in touch and answering my questions!

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You are most welcome. Good luck with the lawyers, Randy!

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jihm...The lawyer said if my doc diagnosed it as silicone, they would be interested and said they will re-evaluate my case. Well, I went to my doc today and he said it is a large Weiss Ring, and not silicone.

So, if you want to pursue your silicone floater issue, you should send them a letter from your doc verifying it as silicone. If you want the name of the law firm, let me know.

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In the case of my doc that is sad-funny. He wouldn't write a letter for anybody, or even give anybody the time of day. He is a real jerk, but very fast and efficient. That is the only reason anyone tolerates him.

I have never even heard him call anybody by name or be empathetic to anyone in any way. His assistants quake in his imperious presence.

I regard him as a necessary evil. I have never encountered anyone like him, and hopefully won't in the future.

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I think the reply above covers the issue for you. I am in England, so far as I am aware syringes with silicone coatings are not used here in the NHS for eye injections although a standard ampoule of Avastin is separated into over 100 shots for use in the eye and is repackaged by the clinic.

A vitrectomy can resolve the problem of the ‘bubble’ but it is not something that you choose to endure unnecessarily.

I have experienced a similar black bubble with orange centre to the one you described but that was merely air which usually dissipates in 1-36hrs

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Interesting, Rennatk. Thanks for the response. I am surprised that a bubble of air and a bubble of silicone appear essentially the same to the patient. Curious, isn't it? Of course the bubble of air goes away, and the silicone does not.

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My first ones were remarkable, at night they appeared slightly luminescent. My condition was not AMD but required radiation, at first I thought I had been left radioactive!!

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Kind of funny in retrospect! Could have been fireflies in the needle! (Kidding!)

But a sense of humor is essential just to get through this kind of thing. (The guy posting about eye drops that cure everything is kind of funny too.)

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Yes, I thought snake oil was confined to the Wild West! 😜

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Ha! We have our share in the wild west too!

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So sorry to hear the disc is still with you. Yes I'd read about using needles intended for diabetes proving problematic but may be confined to the US. I do hope you get some redress for this, at least an apology though I suppose that could be assumed to imply guilt in the US . . .grounds for a law suit? V delicate situation. All the best!

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Thanks, Catseyes. I hope it is confined to the US, for the sake of everyone else. I'm afraid that getting an apology from that doctor, or even anyone in his group, is as likely as "getting blood from a turnip". It is becoming apparent that I will have to seek care for my macular degeneration elsewhere.

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Unfortunately it's not something you can spend too much time on looking around for treatment. But it's such a delicate op you don't want to upset the person administering!

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I faxed the doctor again, and his tech called. They have agreed to try me on Eylea next time. The Eylea injs do not carry the risk of the silicone lubricant, but will they work as well on my eye? We shall see. (No pun intended.)

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I spoke to a lawyer in the USA, who was familiar with the problem. He did some research and unfortunately he could not help me as I'm in Canada, and the drug that I received, while manufactured in the US, was repackages to single dose syringes in Canada. By the way mine came from eylea!

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I've been on Eyelea all along and my older brother also after a strange reaction when he had second injection but he's fine on it now. It is supposed to be the best and I hate to think how much this is costing the NHS but guess it's better than having to look after a load of old blind fogie's with guide dogs - like my oldest brother. Good news is I had injection on Monday, which was almost as well administered as my first, and was told the doc is pleased the macular is drying nicely - so now on every ten week injections from eight. Felt like a kid who'd been moved up a class!! However they say there have been a little change noticed in right eye which may or may not develop into wet macular . . Just have to keep an eye on it . . . Yes I get to do sight puns too . .Good luck with the ( you still use faxes over the pond?!)

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Thanks, Catseyes. I am glad to know the Eylea is working well for you! Good luck with your good eye. I hope it stays dry. The Eylea will be more expensive for me, as well as more expensive for the insurance company here. But, I am hopeful that the Eylea will work as well for me as the Avastin. The tech I talked to today said that they often find that patients must be switched from one to the other medication after a year or so, because one apparently stops working. And then, perhaps in another year, they must be switched back, etc. Yes, businesses here still have fax numbers, and I still have a venerable old fax machine. A fax gets noticed - because it is on paper, and right on the doctor's desk. It is harder to ignore than a phone message.

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You're right about faxes . .difficult to ignore but rarely used now. We discontinued at work before I retired. Eyelea was approved here in 2011 and have spoken to some who have been on it for 4 -5 years with no change to another product. I'm lucky that my AMD was caught early and I retain almost 20/20 vision.

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I'm glad yours was caught early, Catseyes. Almost 20/20 vision! That's amazing. Hope it stays that way. That someone has been on Eylea that long with no need to change is very encouraging. I hope it will work for me. It's only 8 PM here. But, it must be very late where you are. I go to bed early, and get up early. I'll probably be in bed within an hour.

When I was younger I was kind of the opposite - staying up late, and then "sleeping in".

To be honest, I don't know how I got into this early to bed and early to rise routine. But I guess it suits my age (75). Cheers, for now.

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Just realised my last post was way after the last post, which in my night owl life was more lark like as the dawn chorus had started - around 4 a.m.. Could not sleep as working today invigilating but best to be in a trance like state Zen state anyway. Love the idea of getting up at dawn but rarely achieve it unless bird watching. Was discussing what seems to be growing numbers of people with AMD but sure this us partly due to us living longer. However My relatives and I cannot think of anyone in previous generations with AMD so wonder if there is something environmental to factor in as well as genetics. Time for middle of day snoozette!

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I have the same. Wrong syringes used during repackaging by a pharmacy the most likely cause.

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