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

[LithEruiel]

Just had my annual eye exam and mine has not progressed since last year. I've been off Elmiron for two years. I'm at least taking it as a positive since last year it was worse.

[ICNDonna]

Just had my annual eye exam and mine has not progressed since last year. I've been off Elmiron for two years. I'm at least taking it as a positive since last year it was worse.

Thank you for sharing your experience --- and I'm glad your problem hasn't increased. I remember I was upset when I developed side effects after several months on Elmiron --- now I feel I'm among the fortunate.

Sending warm hugs,
Donna

[BlessingLinys]

Hello! I understand that pigmentary maculopathy is a serious disease that can significantly affect quality of life. I have heard of cases where stopping medication can help slow the progression of the disease, but it does not always guarantee complete cessation. I understand that you already went off your medications two years ago, and you believe the disease is still progressing. I would recommend that you see your physician and ask all of your questions about the progression of the disease and possible treatments. Your doctor may recommend additional tests to find out what factors may be influencing the progression of the disease. You can also try to change your lifestyle to slow the progression of the disease. Some factors, such as smoking and an unhealthy diet, can make pigmented maculopathy worse. You can ask your doctor for tips on lifestyle changes to improve your overall health and slow the progression of the disease. Either way, I wish you good health and success in your fight against pigmentary maculopathy. Don't forget to monitor your health and see a specialist in time to get the help and support you need.

[icnmgrjill]

Perfectly said Blessing!

[MommaD]

Update: I just had an exam by my retinal specialist and my vision has continued to decrease. Now that spring/summer is upon us here in Indiana I’m dealing with the ever changing light conditions and the difficulties associated with lack of depth perception. I have started using a white cane in certain situations to stay safe and let others around me know that I am visual challenged.
In reply to Blessing’s post above. I have always been sensitive to chemicals in my life therefore I don’t drink, smoke, or eat processed food for the most part. I eat a clean, whole food diet and have followed the IC Food List diet for many many years.
I have reduced my exposure further by detoxing my home from chemicals in cleaning products, health and beauty products etc. I got rid of my pots and pans and bakeware and replaced them with stainless steel. Replaced plastics with glass and stainless. Stopped buying bottled water and now use a Clearly Filtered water system. The list goes on and on. Thank you for your recommendations but I’m just one of those people who are effected by “life”. I have an amazing family who support me and a strong faith life to help me on this path wherever I’m led. One Day at a Time.