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why are some afraid to start elmiron

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  • mom_in_ma
    replied
    I just started taking elmiron a week ago...so far, knock on wood, I've not had any side affects. I'm crossing my fingers and toes that this will put me back in remission.

    I've not had a problem with the dosage timing, I take one in the morning, one about 3 PM, and another at bedtime. If anything, it's good for my diet because I'm not snacking. I've even lost a few pounds!

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  • sweetz0625
    replied
    I actually have been taking elmiron for about 4 weeks, and I cant already tell a HUGE difference, actually I am in remission with elmiron and I couldnt be happier. I cant believe it worked so soon and so well

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  • PickPink
    replied
    What scares me is the percentage of people who it doesn't work for - and the amount of time that it takes to start working. It's really a coin toss on a lot of things, it works for some - not for others, some have hair loss while others have none. It's scary, you never know if you will be one of the lucky or unlucky.

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  • massagedoula
    replied
    See my post in the Elmiron/headache thread about the capsule (my theory).

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  • ponytail
    replied
    I wonder why the capsule causes so much aggravation? I have had a painful stomach all day today and I think it is the capsule. I am going to start taking it without the capsule to see if this makes a difference. But what is in the capsule to give us so many problems. Anyone know?

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  • massagedoula
    replied
    I was scared to take it at first too, after reading all the posts of others that were scared. But I eventually did and 15 months later I can't believe how much better I am. I was just thinking about it this morning, how much I really owe my current state of well-being to Elmiron and how glad I was to have not been too afraid to take it. I never lost hair, though I was paranoid about it for the first 6 months, and had mild headaches, but I take it out of the capsule and never had a problem since. I also sometimes miss the afternoon dose, and it still works fine for me.

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  • mary124
    replied
    Stick with it thats all I can say! Between this and the diet, hydros and some other medicines can't really say I'm in remission-- was many years ago, but I'm living. After taking this for so long, I still miss the afternoon dosage alot.

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  • curlycue
    replied
    Elmiron

    All I can say it saved my life.

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  • sweetz0625
    replied
    I have been on it since saturday and I have had no problems, just the fact of weird timing to take it

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  • mary124
    replied
    Yeah, if it wasn't for insurance, couldn't afford it, not on top of the other medications that I take!

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  • meme
    replied
    Its been close to a year now for me, and I've noticed no ill side effects (except the cost-lol!) If it works though, and it has for me, its worth it!

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  • mary124
    replied
    At first, I had headaches when the doctor double my dosage but they went away after a few weeks. No problems now.

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  • smcclafferty
    replied
    Mary, wow, you've been on it 12 years...did it cause you any other side effects, such as headaches? Thank you.

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  • mary124
    replied
    I agree with what the others say, the hair loss and the fact that it can hurt your liver enzymes. But with your hair loss, its only a slight one (4%) and with the liver enzymes, have your doctor do a blood test once a year to see if its normal. I have been on this medicine for 12 years now, and never had a problem with this.

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  • smcclafferty
    replied
    Hi! My doctor is pushing me to try it ASAP, but I must admit that I am scared too...I guess because of potential side effects. I may start it within a week though, how are you doing on it?

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