On a journey: I have been getting injections... - Macular Society

Macular Society

3,686 members1,929 posts

On a journey

No2020
No2020

I have been getting injections for macular degeneration for 4 years. Have experienced floaters in shape of bugs,, washers. Some lasted as long as several weeks. Most of them went away after a few hours or days. In January, I had a black circle with white inside in the left eye, and it never went away. It bops all over with every eye movement, and is Beyond irritating . I reported it to FDA. I have since been switched from Avastin to Lucentis. Has anyone else experienced this? And reported it, hopefully?

7 Replies
oldestnewest

Hi no2020, I had the shiny black polo mints a few times with Lucentis but they always went away. I recall how distracting they were, must be awful to have them permanently. What does your clinic say?

No2020
No2020 in reply to eyesright

I had another injection with Lucentis ( left eye only) just yesterday. Got the shiny black blob right away. Also, went blind and couldn't see the fingers the tech always holds up ...pressure was 67. Doc came to check, waited 5 minutes, then it returned to normal.

This morning, the black spot is gone.

The floater that remained from the Avastin injection is different. It is smaller, black outside, almost neon white inside. Doc days it is a micro droplet of silicone oil used on the plunger/needle. The compounding lab does this. This is what we are investigating. Are there more? Same lab? Same batch?

Hoping to hear from others. This is a great way to connect.

Clinics are super careful giving you information, always assuming that people are looking to sue. I just need to understand, and if somebody really messed up, keep others from having this happening. It is extremely bothersome.

By the way, the injections have really worked. My right eye only gets the shots every other time, the left one 6 weeks apart. No new leaks.

Thanks for caring.

eyesright
eyesright in reply to No2020

Hi no2020,

I don't want to alarm you but have your clinic said there is no risk to you from the silicon oil?

I would ask them for something in writing and get a second opinion. You might not be interested in suing but you need to know any potential impact for the future in case you get complications or a new condition that might be impacted by the oil.

Interesting if you find others.

Wow that's a big IOP rise. I would have freaked out to be blind for so long. Bit late now to send a hug but fingers crossed ok next time.

Glad the inj are working for you x

No2020
No2020 in reply to eyesright

I have asked a lot of questions about that silicone oil. My doctor has been very patient explaining the need to use this.

It enables the plunger and needle to operate smoothly. Under normal conditions, it is such a microscopic amount that it disintegrates and sinks to the bottom of the eye, where it doesn't cause any problems with vision.

But, if it is improperly shipped, it can separate from the needle and mix with the meds. Freezing/thawing will do this, also shock. Its the compounding lab's responsibility to make sure this is done properly. By the time it gets to the clinic, it is stored for very short times and used within a 'safe' time. I have absolute confidence in the clinic and doctors I am dealing with. Much less so in the labs. One of them recently was responsible for a recall, of contaminated Avastin, which caused serious damage ( infections).

I am hoping to hear from others, so we get an idea whether there is a common thread.

I understand that Lucentis has a better record, as it is not compounded.

eyesright
eyesright in reply to No2020

Glad to hear your clinic is on top of it for you. I briefly googled the topic when you posted and there were a couple of warning publications (although I didn't read in depth).

As you are actively seeking others may I suggest you repost using the title to say this/ask the question.

(Given no-one else has responded yet I think this original post may get missed by anyone who just skims the titles ).

Wishing you all the best x

Thank you. Good advice. Hopefully, I will hear from others.

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear No2020,

What was the feedback from your ophthalmologist?

Have you discussed your concerns with them?

We do have a leaflet on floaters. Please contact us if you would like us to send this to you.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

You may also like...