Any Update on Elmiron/Macular Studies?

[Chazari]

Has there been any update on studies showing the link between Elmiron and Macular Degeneration? My eyes are okay (for now) and I have been taking Elmiron for 20 years. I've reduced my dose to 1 pill per day, 5 days a week in an abundance of caution. Thanks.

[ICNDonna]

I haven't seen any updates. It's good that you having regular exams and that your eyes are okay. Is the elmiron still working on the low dose?

Warm hugs,
Donna

[amyc16]

Just went to my ophthalmologist and after several tests he determined I do have some retinal maculopathy. I am scheduled to see a retina specialist in 2 weeks. Call my Urologist and he said it was a preliminary study so I should not worry yet. That didn't seem like a very helpful answer since I already have some damage. What seems most helpful if I stop taking Elmiron. CystoRenew?

[ICNDonna]

Just went to my ophthalmologist and after several tests he determined I do have some retinal maculopathy. I am scheduled to see a retina specialist in 2 weeks. Call my Urologist and he said it was a preliminary study so I should not worry yet. That didn't seem like a very helpful answer since I already have some damage. What seems most helpful if I stop taking Elmiron. CystoRenew?

to the IC Network.

If elmiron is helping you, you might want to wait until you see the specialist before you make any changes since it's only two weeks until your appointment. How long have you been on elmiron?


Donna

[amyc16]

I have been on Elmiron for about 15 years. My IC has been under control for about 6 years. But Retina damage is irreversible so I am definitely concerned.

[banjogal]

I have been diagnosed with macular degeneration and no one in my family has it. I have been on elmiron for 15 years. I decided even though the correlation is not extremely strong to go off of it for the sake of my eyes...am hoping the degeneration will slow if not stop. Am not looking for it to reverse course. Am also hoping that I do not go back to the pain .....all I can do is try. I feel to be between a rock and a hard place. I am an artist so my eyes are truly needed to continue my work.

[BOARDWORKER]

Haven't been on here in a long time, but by chance saw the info about eye issues and Elmiron. Have been taking Elmiron since almost when it first came out on the market....what is that like 30 years or close to that? I do have eye issues..... Had retina surgery three and a half years ago on my right eye, they did a retina "peal". Went through lots of issues with that eye after that and to this day my vision is messed up in that eye. Have cut my Elmiron dose down to one capsule (100mg) a day since hearing about eye issues connected to Elmiron, but wondering if I should just stop taking it altogether. Have been taking LDN for 6 years or so and it has really helped me a lot, so thinking maybe I could get by without Elmiron. Hate not knowing what to do and doctors are just "practicing"...... Did see my eye doctor a couple weeks ago and asked him about the connection between eye issues and Elmiron. He was clueless, but very interested, so maybe he'll do some research on his own (I can hope).

[ICNDonna]

Haven't been on here in a long time, but by chance saw the info about eye issues and Elmiron. Have been taking Elmiron since almost when it first came out on the market....what is that like 30 years or close to that? I do have eye issues..... Had retina surgery three and a half years ago on my right eye, they did a retina "peal". Went through lots of issues with that eye after that and to this day my vision is messed up in that eye. Have cut my Elmiron dose down to one capsule (100mg) a day since hearing about eye issues connected to Elmiron, but wondering if I should just stop taking it altogether. Have been taking LDN for 6 years or so and it has really helped me a lot, so thinking maybe I could get by without Elmiron. Hate not knowing what to do and doctors are just "practicing"...... Did see my eye doctor a couple weeks ago and asked him about the connection between eye issues and Elmiron. He was clueless, but very interested, so maybe he'll do some research on his own (I can hope).

It's really a difficult decision to have to make. You might talk to your doctor about stopping for a few weeks to see if it makes a difference. Also --- there are some fairly new products in the ICN Shop that you might want to try. I wish I had a real answer for you, but I haven't seen anything new on this one.

Warm hugs,
Donna

[BOARDWORKER]

Thanks Donna ! Good to know that there are others facing these same issues.... Tapering off to just one dose of Elmiron a day has not impacted me adversely (yet...), so I may just go for it and stop Elimiron totally to see how I feel. I'll just be relying on LDN then (which has been my lifesaver). Hard to know which way to turn on a road never before traveled.
Keith

[HollyS]

Just went to my ophthalmologist and after several tests he determined I do have some retinal maculopathy. I am scheduled to see a retina specialist in 2 weeks. Call my Urologist and he said it was a preliminary study so I should not worry yet. That didn't seem like a very helpful answer since I already have some damage. What seems most helpful if I stop taking Elmiron. CystoRenew?

Has your vision worsened or stabilized? Are you off elmiron?

[HollyS]

I have been diagnosed with macular degeneration and no one in my family has it. I have been on elmiron for 15 years. I decided even though the correlation is not extremely strong to go off of it for the sake of my eyes...am hoping the degeneration will slow if not stop. Am not looking for it to reverse course. Am also hoping that I do not go back to the pain .....all I can do is try. I feel to be between a rock and a hard place. I am an artist so my eyes are truly needed to continue my work.

How is your vision now?

[lennyi]

I was on Elmiron for 12 years. I stopped taking it 3 weeks ago and I am in some kind of pain. I’m also 11 months off Valium and still going through that withdrawal. I called my urologist this morning waiting for a phone call. I am in so much pain - the muscle tightness, pain and burning in my legs and my pelvic area is in a vise. Don’t know what to do or take. Just took an azo for the discomfort. I did take a little Elmiron this morning too. I’m too desperate after being like this for three weeks.

[cynb2003]

Hi all, I've been on Elmiron since 2005 when I was first diagnosed. I'm extremely nervous of the implications of this medication. Never mind how much this drug costs me for a co-pay ($2500 for 90 days) and now this! I started to wean down from 4 a day to 2 a day for the last 6 months, heading towards 1 a day and honestly would like to stop it all together. BUT I don't want to go back to where I was. So....I see that people have been chatting about LVD...not sure what you are referring to. I used to take Elavil but my uro had me wean off this a few years ago due to that being related to later on in life dementia issues. So, after Elmiron, I'm on nothing. I'm considered MILD and honestly have been very fortunate in my journey with this disease since Elmiron. I haven't been on this site in years, I've been just living my life and things have been fine with my regimen but now I need to figure out something. I contacted my eye doctor and asked about the recommended eye tests for the issues that may occur. I'm researching alternate paths for my life forward if I do finally stop taking this. I've always had a very strong eye prescription. Last few years I started to wear reading glasses but I am 54 and that is expected. I've also developed dry eye approx. around 2010. So....is this all related? Not sure. I've had my eyes dilated in 2019 and haven't had a check up this year with COVID. But things were fine. But now with these commercials on the tv I'm getting a bit freaked out. Lots of research to do!

[ICNDonna]

Hi all, I've been on Elmiron since 2005 when I was first diagnosed. I'm extremely nervous of the implications of this medication. Never mind how much this drug costs me for a co-pay ($2500 for 90 days) and now this! I started to wean down from 4 a day to 2 a day for the last 6 months, heading towards 1 a day and honestly would like to stop it all together. BUT I don't want to go back to where I was. So....I see that people have been chatting about LVD...not sure what you are referring to. I used to take Elavil but my uro had me wean off this a few years ago due to that being related to later on in life dementia issues. So, after Elmiron, I'm on nothing. I'm considered MILD and honestly have been very fortunate in my journey with this disease since Elmiron. I haven't been on this site in years, I've been just living my life and things have been fine with my regimen but now I need to figure out something. I contacted my eye doctor and asked about the recommended eye tests for the issues that may occur. I'm researching alternate paths for my life forward if I do finally stop taking this. I've always had a very strong eye prescription. Last few years I started to wear reading glasses but I am 54 and that is expected. I've also developed dry eye approx. around 2010. So....is this all related? Not sure. I've had my eyes dilated in 2019 and haven't had a check up this year with COVID. But things were fine. But now with these commercials on the tv I'm getting a bit freaked out. Lots of research to do!

If you decide to stop taking Elmiron, I suggest you keep a detailed diary so you can identify triggers that can cause you pain --- since you are a mild case, you might be able to get away with it. There are also some products in the ICN Shop that you could try.

The eye side effect from Elmiron is really scary --- I understand your anxiety. I couldn't take it when it was first approved due to a headache side effect --- I was very upset at the time, but now I think I'm fortunate that I had to stop taking it.

Sending huge hugs,
Donna

[cynb2003]

Well, after trying to figure out what to do next for a wean off Elmiron journey, I've just purchased Bladder Build to start trying while still using Elmiron and I am hoping a fantastic outcome!