Has Long-Term Elmiron actually cured anyone?

[Wanderer]

When I say cured I mean effectively put into remission without noticeable symptoms.

I hear conflicting stories, some seem overjoyed with it and that it's worth the low ocular risk and monthly expenses; others not so much.

The question is just that once you start it, do you have to pretty much take it indefinitely, or is there a certain point in time when most patients are able to discontinue without going back to square 1?

[MommaD]

No, but kept symptoms to a low hum in the background. I took Elmiron for 10 years and am one of those who have suffered vision loss due to it. To me it is not worth the risk. My life has been dramatically changed for the worst by taking it. I stopped it as soon as the Emory Eye Clinic report came out through Jill and retinal changes have continued to progress. With all the new information on subtypes I am able to control my IC symptoms more naturally with pelvic floor therapy and limiting my exposure to toxins ( cleaning products, personal care products, foods etc.) Good luck.

[ICNDonna]

I wish I could say Elmiron is a cure, but honestly I can't --- it has helped a lot of ICers with bladder symptoms. That's why it's so sad that some have had eye problems as a result. I was upset when I had side effects and couldn't take it --- now I'm just thankful. Those who are helped usually need to continue taking it, and it's long term use that's related to eye problems. If you decide to rely on it, I strongly suggest regular eye examinations, letting your ophthalmologist or optometrist know you are taking it.

Sending warm hugs,
Donna

[rantn.n.ravn]

I still need to seek the appropriate exams which hopefully my insurance will cover because I do not have vision insurance separately. My biggest problem is that I started having vision difficulties due to age because I was over 40 and ended up needing a slight vision correction for both near and far vision...and so my first glasses needed ended up being bifocals. I was told I could just do reading glasses and then on a second visit to the same place I was told I have astigmatism. The information I have seen about it is that astigmatism happens due to injury or it is usually present all along. So apparently I had vision for the first 40 years with astigmatism that was not bad enough to ever fail the initial vision exam and nothing of the other tests ever seemed out of the ordinary. I feel torn about the whole Elmiron and vision issues because I am sure Elmiron has helped my bladder, but since they don't know how it works to help and that it doesn't permanently fix things from what I understand some people just manage to go into remission. Also I've seen some post they decided to stop taking Elmiron because they felt better enough to go without it, but then had flares that could not get back under control even with restarting Elmiron. But what perplexes me is if the problems with vision continue to worsen if Elmiron is causing that, and it's not yet determined when the deterioration stops. Is the vision issue and bladder difficulties happening together without a way to help either better? I will of course get the appropriate exams and I will just not be allowed to take Elmiron any more, and then have to continue to deal with my vision deteriorating. And of course to make it that much worse. I have no idea what kind or if I will have any insurance as the new year starts. Then what?

I want to say that I am not at all trying to say I don't think that vision loss and deterioration are not affecting others in horrible ways, I am just asking what makes sense to stop and then still have to deal with both set of symptoms getting worse when you stop taking Elmiron. I am truly sorry anyone has experienced the deterioration of their vision due to trusting a medication that was our community's "miracle drug' from what I can tell. It sucks all around I think and it makes no sense why it's happening to so many people that already have so much about their health that is difficult.

I wish everyone the best and that things are figured out and I wish I could give and contribute to the research for that to happen but poor people don't have much.

[ICNDonna]

I encourage you to talk with your ophthalmologist when you go for your next exam so you will have a better idea of how Elmiron can effect vision. You can also do some internet research. I have some age related vision changes and I was not able to take Elmiron.

Warm hugs,
Donna

[plaedes]

I started taking Elmiron in 2002. IC was so miserable for me at first that I didn't know what was working and what didn't. When I was diagnosed I was asked to do a drug trial for Elmiron which I did, because I'm stupid. What that meant was that I got bottles of pills that I didn't know if they were Elmiron or placebo for about 6 months, maybe a year...don't remember now. Because of the trial though he couldn't tell me all the important things like stop eating that vegetable soup with tomato base or that spaghetti that I loved so much. I continued eating all the wrong stuff until I got off the trial. As soon as I stopped drinking coffee everyday I got a little better, then the tomatoes and got a little better again. I continued this way for the next few years and still taking the Elmiron and still hurting all the time. I was getting bladder instillations done almost monthly at first. Back around 2012 I stopped all soda finally and have been eating well for my IC issues for years and things just kept improving. 2016 was my best year for IC. I had a lot of intestinal problems that year and was doing yoga for digestion every single day as well as eating mindfully (slow, thorough chewing of food until it is liquified) and doing Kapalabati breath practice before every meal to get my digestion going. Through all of this there was a great amount of abdominal muscle toning going on with all of the yoga and especially the breath practice. I was also able to do Mula Bandha for the first time without hurting, it is like a kagel, but it includes more of the lower abdominal muscles. This helped greatly with the incontinence I experience frequently. 2017 wasn't as kind and I had a lot of bladder instillations done that year and had many set backs in keeping up with my yoga regimen. I can no longer do the mula bandha and have the incontinence worse than ever right now. I was most surprised however that I made the decision to just stop taking the Elmiron all together after having my tubes tied in Dec. of 2018. I still have urgency and frequency issues and from time to time I have some pain, but I haven't had any instillations or taken anything for my IC this year other than antihistamines and the occasional Uribel. For me kicking all of the bad foods out of my diet helped the most. The bladder instillations work if you are having pain, but they don't seem to help for urgency in my opinion. I think they actually make it temporarily worse after. I have even tried the Oxytrol patch for over a year before they took it off the market. When I couldn't find them anymore and had no choice I stopped and immediately couldn't hold my urine at all! For about a month after those patches I couldn't control my bladder at all. I wet myself constantly and wet the bed several times as well. It was the only one of those drugs that helped me, but now that I've been off of them for years I wouldn't go back to them now. Just found a competitor for Desert Harvest Aloe on Amazon as well. There looks to be a few that might work just as well without being as expensive as Desert Harvest. Honestly looking back, I have to wonder if Elmiron really did anything at all since I didn't even notice that I stopped taking it. So, in short.....No, Elmiron did not heal anything for me. Not eating acidic foods helped tremendously and still does!

[pinehtr]

No cure and no eye damage ,Taken Elmiron for 11 years. Symptoms are mild and I have tried to go without and suffered greatly.