starting elmiron tablets tomorrow/ what do i need to know?

[holles]

i didn't get a chance to talk to my doc today, just the nurse. but the rx has been called in. he wanted me to start it in the summer, but the diet was helping a lot, and we were still hopeful in the trying to conceive department (not hopeful anymore). the past month or so, i've had more flares than usual. so i asked him if i could start it when i got back from our trip. he said sure.

so, i know i take it 3 times a day. i know that it takes at least 3 months to start to work. i know that it takes up to 6 months to notice a difference. and i know that it doesn't work for everyone.

what i need to know is if it does work for me, do i have to take it forever? or can i stop eventually? is it a permanent fix if it works? i'm seeing the doc again in august for my yearly, so it will be a while before i'm going to pick his brain about this.

can y'all tell me what you know?

[gypsyjoy]

I started elmiron this morning and it makes me really dizzy. I spent most of to day sleeping ,between the elmiron and every thing else that I am taking Sleep is good even if I have to get up to use the bathroom a zillon times a day.
Good luck with your meds.
JOY

[Joyaur]

Elmiron started working for me just as soon as I started taking it...reason I know is...I didn't have any more flares till I cut back to two a day...so went back to three a day..

Also watched my diet...

You may have a bit of hair loss...I didn't...that is one of the possible side affects..
I also got feeling ill when I first started...so took it with food....now I can take two hours before a meal.

[vm]

Most people view Elmiron as a "forever until they find a cure" medication. The belief is that it keeps coating the bladder as long as you are taking it.

However, I have seen a few people post that they were able to taper to a lower dose or stop and were still feeling OK a few months later. More often, the people who stop report the flares coming back.

I have been on it for over 2 years and view it as life long. Doesn't bother me --- b/c I feel pretty normal while I am on it. :)

[Kim Schema]

Hi Holles~
The first day or two on Elmiron I wish that I could have stayed home from work. Just real tired and a little dizzy. By the time I took my third pill that night I was sick to my stomach. The next day I got up and had a headacahe felt like I had been out drinking all day & night!! However after that my body adjusted pretty good. I found in the first three months that I was very nervous. But if I worked out (going for a walk or riding my bike it calmed me down.) Now it has been 6 months, I feel GREAT!!! Just take it easy for couple of days & BE PATIENT! It will work, it just takes time.
Good Luck, my thoughts are with you
~Kim Schema:pray:

[holles]

thank you all so much for the replies. i really appreciate it. :)

i took my first pill today. my big gripe is i have to take it an hour before eating 3 times a day. well, i have to take my other rx an hour before eating and all by itself. :rolleyes: but so far, that's the only complaint.

a little lightheaded and just feeling "weird." but i can deal with it.

yippee about the hair loss though. :rolleyes: my hair is just now starting to fill in better after all the thyroid problems. lol.

also, within 2 hours of the first pill, i had to pee about 4 or 5 times. normal? or coincidence?

[Hope]

Hi,
I hope it goes well for you. I have been on it since october 98. I never had any side effects. I guess I get a little light headed now and then, but nothing really a problem. I take it with food and it helps me just fine.

Hope

[Alexa]

Hi there,

Well first of all, I wish you good luck with Elmiron! It really helped me, and I hope it works for you!

My advice would be to continue with the IC diet while on Elmiron. Often times it's a combinations of medications or treatments that prove to be most effective in controling IC symptoms. I found taking Elmiron 3 times/day a little difficult, so I would take one in the morning and two in the evening.

Also, you might need to be a little patient with Elmiron...everyone is individual, so while some people respond immediately to Elmiron, some people might have to wait a while before they notice an improvement in symptoms. It took a good 3 months before I feel considerably better, and I was on Elmiron for a total of 3 years. I didn't have any side-effects.

Take care and good luck!

:) Alexa

[Joyaur]

One of the side affects I have with Elmiron is very loose bowels..

It isn't IBS..Irritable Bowel Syndrome....but the Elmiron pill that put a GAG layer on your bladder..

Anyone else have this problem?