Still trying to gather information

[No2020]

I am very surprised that nobody on this site has had the same problem I am experiencing.

The large floater which remained after an injection with Avastin in February 2017 is still there. Diagnosed as a silicone oil droplet that somehow separated from the needle and mixed into the medication.

I was switched to Lucentis.

There is no doubt in my mind that the compounding / outsourcing lab was at fault. But to prove this there would have to be others, at least a few, who reported the same problem, which could be traced back to the lot of syringes .

I am still waiting for the FDA to run this through their data base of reported side effects. But I feel they have abandoned me.

This is no small matter: this large floater bops around with every eye movement, makes me feel unbalanced and motionsick, and seems to absorb light. I wear dark sunglasses even on cloudy days. Doesn’t seem to help.

Is there anyone out there who has experienced this, or knows of someone who did? I sure would like to hear from you!

#avastin#silicone oil

[Hidden]

This is a well recorded issue in the USA where some clinics have been using syringes intended for use by diabetics.

There is a Class Action underway. It would be worth googling to find out more.

[No2020 in reply to Hidden]

Thanks.

I haven’t been able to find anything on a class action. Only keep getting solicitations from attorneys online. Not the way I want to handle this.

[Hidden in reply to No2020]

Try the search below in Google. There are various links.

There have been links here in the past but I don’t have access to them.

“silicone in eye injection class action lawsuit”

[No2020 in reply to Hidden]

Thank you

[Hidden]

I am just wondering if the large floater could have a different cause. I too have had a large floater for many months now, yet I never had avastin; I have always been on eylea. Further more, the floater it is not in my treated eye but in the other one with dry AMD. It is more static than the usual floaters and is always there. One optometrist, who also works at the hospital, told me I had asteroid hyalosis- calcium and lipid deposits which show up as lots of tiny black spots and one large one. None of my regular consultants have never mentioned this to me. I had never even heard of the condition. Just a thought.

I hope you are making progress with your issue whatever the cause.

[No2020]

My regular ophthalmologist has diagnosed it as a silicone oil droplet... and so does my Retina Specialist.

It is the size of a washer or olive slice, dark circle with neon bright yellow/white inside. It seems to absorb light, especially sunlight... and gets much larger when I bend over.

It moves with every eye movement.

Beyond annoying! It’s a real handicap to anything... walking, reading, writing, driving.

[Catseyes235 in reply to No2020]

That sounds like something I had but mine was much smaller scale and only last a few days. That was on Eylea though. My other eye is now being treated with Avastin so will be aware. In fact it did feel like a different needle . .much finer and stung a bit.

[Hidden]

It is surprising that nobody has suggested a treatment or at least explained why a treatment might not work. So far as I am aware, one option would be vitrectomy where the vitreous along with the silicone is removed and replaced by saline solution. A pretty straightforward procedure under local anaesthetic and taking around 25mins

[No2020 in reply to Hidden]

My doc says that is an option, when the side effects from that floater become unbearable.

The procedure sounds pretty straightforward, BUT: complications can involve detached retina, and the possibility of having to remain prone (special chair daytime, on bed) for anywhere from 4 days to weeks is real. I am 80 and diabetic... my GP does not like this it all.

I am at the ‘ this should never have happened, somebody - most likely the lab- messed up.

They should be held accountable.

They were written up ( warning letters) for all kinds of violations in the past, one right around the time my injection with the separated silicone oil happened. They are still operating!

[Jihm]

I got a silicone droplet from an Avastin inj that was just as you describe. It remained moving around in my field of vision for many months, and was very annoying. Eventually it somehow floated out of my field of vision. I thought perhaps it had dropped below my field of vision, but the doc said it had floated up above my field of vision. From what I have been able to gather, in the US all syringes of the various types are lubricated with silicone. But the stick-on type is more likely to ooze silicone onto the needle than the screw on types. That was my motive for wanting to switch from Avastin to Eylea. Eylea comes in the screw-on ("luer") type in the US. But less likely or not, silicone can find its way onto the needle from any type of syringe apparently.

[No2020 in reply to Jihm]

Wow, you are lucky!

I am so glad that you had this floater go into hiding, and remain there.

Mine did this... woke up one morning and it was gone. I felt reborn. Went on a hike. Did yard work.

10 days later it was back! I broke down and bawled like a baby , such a disappointment. It has been with me since. And I can’t even write it off my Income tax as a dependent.

Thanks for validating my rant.

[Catseyes235 in reply to Jihm]

Ah I remembered your experience with the circle. I am beginning treatment of other eye with Avastin so may ask about the needle used.

[Jihm in reply to Catseyes235]

Good luck, Catseyes. I'd be interested to learn what your doc tells you. My doc dismissed the idea that the syringe type was the key to the risk of silicone getting into the eyes, but I still would bet that it is.

[Catseyes235 in reply to Jihm]

Will do . .. Left eye Eylea and Right Avastin - perfect for compare and contrast! Price is the first consideration but interestingly they will continue with Eylea for left which was on every 12 week and January will be last one as they are going to try leaving it for a while. Right eye went from dry to wet so started the whole merrygoround beginning of this month. Once more unto the breach . . . Hope you're well.

[Jihm in reply to Catseyes235]

I'm muddling through here - okay for an old guy I guess. Sorry you have to have injections in both eyes now. I hope that will go smoothly and work well. The 2 different medications do present an interesting opportunity for comparison , if you can think of it that way. I am receiving Eylea shots in my right eye every 8 weeks currently - more of an expense than Avastin, but working okay. The left is still dry. I have been living at over 7k feet above sea level for nearly 50 years now, but my COPD is making me feel crazy for not living at sea level. Maybe one day.....

All the best to you.

[Catseyes235 in reply to Jihm]

... and before the last fifty years? I can feel vertigo just imagining such dizzying heights even though I come from the Scotland which projects itself as mountainous for tourists. I'm from the lowlands just at the foot of the Grampians. Give me rolling hills and moorlands any day or even a lonely saltmarsh to feed my soul. Wonder how your COPD would be at lower altitude but guess you're acclimatised now? Take care Jihm!

[Jihm in reply to Catseyes235]

Nice to hear about Scotland, Catseyes. It sounds good to me. I grew up in Pittsburgh, which is sea level. I now live in Taos, New Mexico (7,100 feet). For 20 years I lived just a bit north of here in the mountains at 8,600 feet. My wife and I built a log house up there when we were young. We lost it in a forest fire in 1996, and move down here close to town (Taos). I know my lungs would do better at sea level. But we have been here so long; all our friends are here now. I am retired, of course. But my wife is an artist who shows mainly at a gallery in Santa Fe. Leaving this area would be difficult for many reasons, especially for my wife.

[Catseyes235 in reply to Jihm]

I do understand how friends, attachments and habit keep us rooted. Certainly sounds like you lived the dream and sorry to hear you list your cabin. Despite my love if the country , nature and an agri- environment degree I absolutely love London - the melting pot of people, music, cultures, art, theatre plus green spaces and species monitoring I volunteer for. Loved where I grew up as near the moors, sea, glens but London suits my wide tastes and interests. I'm In a great suburb with great access to the centre and to the countryside.

May life continue to be good to you and yours.

[Jihm in reply to Catseyes235]

Sounds like you are in a great spot. When I was young I lived for a time in New York City - which I loved. I have lived in SanFrancisco and L.A. as well. So, I have enjoyed life in the the city as well as the country. The city offers convenience, culture, and a wider variety of people. The country offers a sort of calm simplicity that can be good for the soul. I confess that at my age (76), I am not sure how well I would do now with the speed and noise of city life. But in my youth I found it exciting. Perhaps I would again. Who knows? Anyway, all the best to you near the great city of London.

Cheers.

[Jihm]

Sorry to hear it came back! Hope it will take a hint and disappear again!

[Hidden]

I am surprised that you have been told that you would need to be face down, posture, for many hours of the day. That requirement is, I understand, needed only when silicone is used to help repair a detached retina. Normal vitrectomies use saline solution with no need for posturing.

[No2020]

I am going to ask my doc about this! Upcoming appointment in a week!

[Scrmom]

I spoke to a law firm in the USA who was investigating and sueing for individuals affected (no class action, because each case is unique)

Spangenberg, Shibley and Liber LLP 216-696-3232 if you live in the USA

Www.spanglaw.com