Has anyone's eye damage stopped progressing

[HollyS]

Has anyone had pigmentary maculopathy stop progressing after being off the medication for a period of time? I just had followup OCT scan and FAF and OCT was stable but FAF showed more pigmentary white spots and I am having more vision issues. I have been off it now for 2 years and my retina specialist was surprised at how the damage is progressing.

[ICNDonna]

Jill has set up an information center about Elmiron and eye damage. The post title is New Elmiron Eye Disease Resource Center --- I encourage you to check there .


Donna

[HollyS]

Jill has set up an information center about Elmiron and eye damage. The post title is New Elmiron Eye Disease Resource Center --- I encourage you to check there .


Donna

Yeah. I saw it. Thanks. Not much news about it sadly, especially good or encouraging news.

[ICNDonna]

I know --- and it's probably going to take time to learn about the ongoing effects. I wish I could have answers --- the only suggestion I have is to be sure to have regular eye exams.

Donna

[MommaD]

I know this is an old post but thought I would reply now that some time has gone by. I stopped Elmiron as soon as Jill posted the findings from The Emory Eye Clinic in 2018. ( I had taken Elmiron for over 9 years with great success.) I had been dealing with visual problem for over a year at that time not being able to find a reason behind the retinal changes. I went from one specialist to another with no answers. My vision has continued to decrease to where I am no longer driving and I need to be very careful judging distances as my depth perception is very limited in some lighting. After being seen for many years at the Kellogg Eye Center at the University of Michigan I’ve recently been told the pigmentary changes may continue causing further loss of vision or it could stop at any time. My doctor has diagnosed me with Pigmentary Maculopathy caused by Elmiron toxicity. Please take this seriously. If you are taking Elmiron know that your body could at any time decide it’s had enough and attack your eyes.

[ICNDonna]

I'm so sorry you are going through this. Your sharing will help others make elmiron decisions. Thank you!

Donna

[LithEruiel]

I know this is an old post but thought I would reply now that some time has gone by. I stopped Elmiron as soon as Jill posted the findings from The Emory Eye Clinic in 2018. ( I had taken Elmiron for over 9 years with great success.) I had been dealing with visual problem for over a year at that time not being able to find a reason behind the retinal changes. I went from one specialist to another with no answers. My vision has continued to decrease to where I am no longer driving and I need to be very careful judging distances as my depth perception is very limited in some lighting. After being seen for many years at the Kellogg Eye Center at the University of Michigan I’ve recently been told the pigmentary changes may continue causing further loss of vision or it could stop at any time. My doctor has diagnosed me with Pigmentary Maculopathy caused by Elmiron toxicity. Please take this seriously. If you are taking Elmiron know that your body could at any time decide it’s had enough and attack your eyes.

Are they doing any treatment for it?

[MommaD]

There is no treatment as of right now. My local doctor is monitoring me and watching for any changes. My doctor at the University of Michigan will notify me if anything new becomes available.

[ICNDonna]

If you hear anything new --- please post the information.


Donna