Please define Elmiron "success"

[sew47]

So I've been trying to read about what people consider "success" on Elmiron, without really answering what I'm concerned about. I'm 22 years old, starting my PhD., and if things go well, I will be getting involved in a new relationship as well. So considering these facts, what are the three things someone at my age still in college desires the most? Caffeine, alcohol, and sex (of course none of which I can have). Okay, that may sound a little over the top, and honestly I've been living pretty well without caffeine and alcohol. But my main issue right now is being able to successfully have comfortable sex, without the aftermath of being up all night in pain and having to go to the bathroom every 30 minutes. I'd also LOVE to be able to have a beer or glass of wine once in a while. Once in a while is all I ask. And I can live without caffeine.

I will soon be starting Elmiron, 200mg 2x a day, and my doctor is giving me the impression I will have a normal life once I'm on this for an extended period of time. So I'm just wondering if anyone has had such success, or what exactly their results meant for them. I feel my IC is relatively mild because if I'm on a pretty strict IC diet (no alcohol, caffeine, and avoid acidic or spicey foods.. and right now no sex) I rarely have any flares and when I do they are usually pretty well managed with Urelle.

[greeneyes]

Hello, we've all been where your thoughts are at the moment, just a few short months ago I was wondering the same thing, I just saw my Uro-Gyno today and don't have to return for 6 month. See my meds listed below, I now can ride my motorcycle, have sex, and go on with my daily routine. In the last 5 or 6 weeks i've had 3 bad days and night, but can't say what the cause was. Good Luck and know you will one day be better.

[Jinny Jean]

Hi!!! I have a relativley normal life ... Just six months ago I didn't think that was gonna be possible. I started on the same dosage of elmiron that you are going to take. I take 2 in the am and 2 in the pm ... started to work at about 4.5 months. Anyways. I have sex ALL THE TIME... pain free and just the way its supposed to be! lol So don't worry, youll get back on the horse hahaha... I am on thee IC diet though just like you, although I seem to be able to eat lots of stuff.. just not the OBVIOUS triggers like alcohol, tomatoes, coffee etc. I work 2 jobs... I am just like everyone else witha normal bladder .. lol MOST days....

I hope elmiron works for you! Your urologist isn't far off when he said you'll be fine once you get on it for a long time. It does help lots of us.... The period of and before diagnosis and treatment is the hardest.. once you find what works it doesn't seem so hard ... (for some of us I guess...)..
Just like Greeneyes, I have good and bad days as well today is one of those days where im like "ok what did I do?" and my frequency goes up .... how irritiating... hahah but this comes after about 5 weeks of normalcy (WHICH IS WHAT I DEFINE AS SUCCESS..) so really I am not complaing too much.. just drinking about 5 liters of water. haha...

Don't dispair, normalcy and "success" is atainable,

Jenn

[meResque]

I can have two of your three listed things: alcohol and sex. I haven't tried caffeine, and I doubt I will, because I don't miss it. (And I drank at least 3 cups of coffee and had 3-4 Diet Cokes a day!)

I do drink pretty regularly, at least a glass of wine a week, I had three this week! Tough week at work. I'm not lucky like Jinny Jean with her rampant sex however, LMAO! It is pain free when my husband and I get around to it though!

It took 10 months for me, of being on Elmiron. I am only on 300 mg. I did the diet strictly for about 6 months, and then added wine back in. It was the most important to me, in terms of things I missed. That sounds so bad, LOL. I still stick pretty much 100% to the diet in terms of food, and that probably allows me to do as much drinking as I do. My bladder was tender, the first few times I drank, and I cut back. I'd keep testing it, in small amounts, and the longer I was on Elmiron, the less it hurt. Once I reached 10 months, I no longer felt my bladder at all. It's nice, but I really don't intend to press my luck any farther than I already have! Unless I start having more sex.

[Jinny Jean]

bahahaha Trust me it took awhile for the rampant sex but now its alot better
I am still SO scared to try wine or coffee... So see! We all have our "things" lol. I hope the longer i'm on elmiron the less I feel my bladder. I have been doing SO well latley, but today was an "iffy" day... where there was a period of a few hours that I was going every 40 min or so... how IRRITATING after being normal for weeks... then your like "oh right I have a tempermental bladder..I forgot...." lol

Going to bed! Night everyone

[phoenixgirl]

JinnyJean and MeResque, now that your bladders are feeling better and you can do/eat more things, have you also noticed that you can go longer between pees now or not? I just finished my 4th month on Elmiron and am about 2 1/2 months using CystoProtek and while I haven't noticed huge differences yet, I definitely know I'm feeling better than I was a few months ago. On my very best day though I can still only hold out about 2 hours max between bathroom visits and I'm just wondering whether or not that will improve as my bladder continues to get better or if that is the best I will ever be able to expect. Have either of you, or anybody else that is having success on Elmiron noticed a difference in your frequency?

[nottoc4]

I'm on Elmiron almost 3 years now and the frequency was the last thing to improve. I can have sex with no pain,drink decaf coffee with no problems but do not drink alcohol of any kind so I don't know how that would be.
I can eat cooked tomatoeslike pasta sauce,eat dark chocolate,and in small amounts other iffy foods. For sudden increases in frequency or discomfort I drink 1 tsp of baking soda in 8 ounces of water and within 30 minutes I am ok.
I was strict with the diet for 6 months at least before trying any no no foods.

[Jinny Jean]

Oh most definatley. On a good day, I only pee about 4 times a day. Once when I was at work I realized that I hadn't gone to the bathroom in 7 hours, so yes my frequency ha gotten tons better- back to normal. I still have those days where I have frequency (the last 3 have been a bit iffy) but all in all it is much much better than it used to be.

Jenn

[phoenixgirl]

Thanks, ladies! That is great news. I am just waiting for the Elmiron to do its thing. Good to know that the frequency does get better at some point.

[phoenixgirl]

I'm on Elmiron almost 3 years now and the frequency was the last thing to improve.

nottoc4, do you remember at what point you noticed the frequency getting better? I do miss certain foods and drinks a lot but this constant peeing thing really is so hard for me to deal with. As much as I love chocolate and wine, I'd give up either of those indefinitely to not have to worry about finding a bathroom every hour no matter where I go.

[nottoc4]

I think it was about the 1 year mark and the night time frequency took even longer.
I just had a UTI in June so the frequency increased again,especially at night, but has relented
a bit now. I get up 2 X at night usually.
I went several months without Elmiron...mid NOV through January of this year due to having open heart surgery and then pneumonia and the good news is none of my symptoms came back,even after I was off the pain killers for the surgery. I live a pretty normal life.I'm 69 years old.

[meResque]

I can't speak to the frequency part, that has never been a big symptom for me. On my good days I go 4-5 times and on bad days I usually only get up to around 9. I do not go at night unless I'm pregnant.

I went around the same even before any of this was an issue for me. Who knows if it was pre-IC, but it was pre-symtoms anyway.

[Jinny Jean]

Meresque:

You were pregnant with IC? How were you able to handle it!? I think about having a baby all the time, even though Im not ready yet... It worries me alot....

Jenn

[meResque]

Sorry, I probably won't be a huge help to you on that. I have never carried a pregnancy past 8 weeks. Not related to IC though. It's funny, the second I get a positive pregnancy test, I immediately wake up once at night to pee. This last time, I woke up a few nights before my positive test, and told my husband I didn't need a test, I was peeing at night, therefore I was pregnant. Great predicter!

I immediately stop all meds as soon as I'm pregnant, although my doctor and I made the decision to remain on Elmiron. There is no evidence it is harmful to unborn babies, and it does not cross the placenta, so I feel the risk, if any, is minimal. If you have mild IC, which it sounds like you do, I would think pregnancy would be pretty normal for you... it sounds like many go into remission. I have pretty severe (at times) pelvic/back pain in addition to IC, and going off the amitriptyline is the hardest part for me. A few weeks of being off of it, and the pain gets pretty intense. Worth it to me though. Maybe we'll do pregnancy together eventually. I'm on a break from trying currently.

[Jinny Jean]

Thank you for the advice!!!

Yes I do hope that pregnancy is normal for me, I would probably opt to tay on ekmiron too, but not ure a of yet...

GOOD LUCK !

Jenn