Has anyone stayed in remission and never had a reoccurance

[GWENDOLYN]

Is there anyone out there who had been in remission for a long time and it still has not come back? How long does a remission last? Can you eat the forbidden foods when you are in remission?
Good luck to everyone and take care!

[ICNDonna]

My uro had one IC patient who had a twenty year remission. She came out of her remission about the time I was being diagnosed.

Donna

[meme]

I had a nice 4mo remission while on Elmiron and Elavil and sticking strictly to the IC diet. During that time I had days where I could forget I had IC. I was able to eat chocolate again and have coffee. Still wasn't able to eat Spaghetti or chili or lasagna, but it was nice to be able to add some of the yummy foods back in. I think that if I were to continue on with the meds I would've stayed in remission longer. I had to wean myself down as I'm trying for a baby. I'm still doing okay, took my last Elmiron pill today and will be off the Elavil in about 15days, will see what happens then. So far I've been able to sneak a little chocolate in here and there and its okay, and last week I was able to go out for drinks (that had OJ and soda as mixers) and did just fine. I have pain maybe 3-4days of the week again now, but its not as bad as it used to be and when I get the urgency I'm able to hold it longer now. I'm so hoping for remission for all of us. I really didn't think I would ever get better. I'm so glad to be wrong! Plan on going back on my meds as soon as I can after I get pregnant and have the baby, that is unless I'm one of the lucky ones who goes into remission during that time. Wouldn't that be great?!

[kadi]

I have a friend with IC who has been in remission for 4 years. No symptoms, eats & drinks normally. She is going to have a baby in a few months, no problems in pregnancy either.

[Berkshire Road]

My pain management doctor has IC (yes, I do know how lucky I am!) and she has been in remission for more than 14 years.

[mary124]

I had a 5 year remission with just being on Elmiron. I was able to eat and drink what I wanted, then I had a hyster. in 2000 and that was the end of that, since then I had days where I was doing fine without pain.

[miz_sunshine87]

Well mine has come back, so I guess I don't really fall into this category. But, it lasted over 4 years (with one mini-flare 6 months before it came back full time).
I ate and drank anything I wanted (but I don't think I am very diet sensitive anyway).
I never had any pain or discomfort. I totally forgot that I even had this terrible disease!

[austink]

I had been in remission for over 4 years until a few days ago. It just spontaneously went into remission right before a pregnancy. I stayed that way, without meds or special diets, for 4 years (plus another pregnancy and two C-section births). It came back a few days ago and really hit hard yesterday. I go to the doctor today. Those were 4 fantastic years!

[dminton]

I too went into remission just before getting pregnant, and it lasted 8 years. When it came back, it hit me very hard.

Diana.

[Janie Miranda]

My guess is that anybody who may have went into a permanent or long term remission (still in the remission) - wouldn't be posting too much on these boards. They might even be in denial that they ever had IC to begin with.

[dminton]

It's pretty easy to go into denial about IC! I've done it many times.

I know another woman locally who, when she went into remission, does NOT want to talk about it at all. She was lucky and found that Elmiron helped her, after she was in her 40's and has had IC since 6th grade.

Diana.

[Janie Miranda]

Diana,
Yeah, I brought up the denial part because I'm kind of doing that right now too. LOL
I'm one of the Elmiron responders too! I'm not in total remission but enough that I think . . . well, maybe it is just PFD or something.
Sorry, that you are out of remission.

[dminton]

I'm so glad Elmiron worked for you! I took it for 3 years, and nothing. The heparin instills work better for me. Of course, it has to be the expensive labor-intensive thing that works better for me!

Diana.

[dminton]

I forgot to mention that during those 8 years of remission, the only time I ever had bladder pain, fleetingly, was when I had to take decongestants once, and again when I drank a bunch of vodka and orange juice to get on a plane! I remember feeling like it wasn't really gone, just lurking, and something was protecting me from having symptoms, probably hormones or something.

Diana.

[Janie Miranda]

That's interesting Diana, about thinking hormones were protecting you. My IC got bad when I went into perimenopause. I do think there is some kind of hormonal link.