questions, feedback would be appreciated so much!

[linz]

everyone i've heard talk about going into remission seems to have had it happen within the first few years of being diagnosed.

i've was diagnosed having IC since around 13/14 years, and am now 20, but i've never come close to being in "remission", has anyone had the disease for longer than this before they reached remission? i just can't see myself ever getting there.

what was the time building upto remission like? did it slowly get better all the time or very suddenly? did you start any new treatments or meds (we can't get elmiron here in the uk:-( )that you think might have pushed you into it? during remission are you completely free of symptoms or are they just very "light"? for example, could you eat things that were against the IC diet with no repercussions after?

every doctor/urologist i've seen has told me since i was diagnosed young it's likely that the IC will "burn itself out" and i might just have to grumble on the way i am for a few years, but i really can't ever see myself being IC free now it's dominated my life for so long. was anybody else told this?

[ICLori]

Hi, Linz, (((HUGS))) I'm sorry you are suffering so much from this IC. I feel so sad for you because of this suffering and also because you are so young to be suffering like this.

I had a wonderful remission after starting Elmiron for five months, but apparently it stopped working for me because I have had pain again for 3 months straight.

When I was in remission, I was suddenly shocked to find that I no longer had to urinate every fifteen minutes to half an hour - suddenly I could go an hour or even two sometimes between voiding. I also noticed that I could eat and drink anything I wanted without my bladder bothering me.

This disease is such a mystery, it seems to come and go in some people without much rhyme or reason.

I am now trying the Cystoprotek/Algonot 5-1 in the hopes that it, combined with my Elmiron and also some MSM I am taking, will help put me into remission again. It is too soon to see if it is helping.

You know, my urologist told me, IC tends to get better, the older you get - you suffer less from it. I don't know if that is true. I would LIKE it to be true though.

Blessings, Lori

[linz]

thanks so much, you've replied to both my messages today. it's funny but i only seem to come onto these boards maybe once a month when i'm at my absolute breaking point, and each time i get the loveliest replies from people, i really appreciate the way everyone is there for each other on these boards <3

:-( this adds to my theory that the key to reaching remission seems to start with elmiron lol, i havent heard of anyone who reached it without it. i wish they'd just liscence it in the uk already! just reading stories online i see how much people in the states swear by it and how many urologist suggest it and can't understand why our stupid country wont let us UK suffers try it!

[vm]

I am fairly symptom free now - although I will still flare from time to time. Mine came after a combination of meds and it happened very gradually. Slowly my symptoms diminished more and more.

I VERY gradually tried some of the trigger foods (that I had avoided like the PLAGUE before) once I felt very good. That was also a slow process, but I can now eat whatever I want.

Elmiron is one of the meds that has helped me immensely, but people do have "remissions" who aren't on it. Hang in there, OK? There is hope. :kissing:

[mayray518]

"Burning itself out" sounds like a typical response from an uncaring urologist. What do you do in the meantime? I got better but it was after years of trying different meds, diets, to find out what works for me. In my case when I go off my medication it comes back and I have had IC for 10 years so it is not going anywhere. The thing to do is to find a way to minimize the chronic pain. There are many ways to do this and getting on this site and talking to others is a good start.

[Daniel]

Linz, I didn't realize that Elmiron wasn't available in the UK. I am virtually in remission right now (as in virtually 100% fine), and I attribute it to Elmiron.

I would suggest that you do whatever you can to get Elmiron. I'm pretty sure that there are web-pharmacies that might carry it and ship to the UK. It does take weeks/months to work, and it doesn't work for everyone, but it is sure working for me!

I think it is pretty awful that a first-world nation like Britain would not have access to important, life altering medications.

[ICNDonna]

Elmiron didn't work for me. But I do have a lot of time when I am symptom free. I do watch my diet and I just don't usually even try my trigger foods. To me the food just isn't worth the pain. My IC was diagnosed in 1975, before Elmiron, and before DMSO was being used for IC. DMSO does seem to help me go longer between hydrodistentions.

Donna

[mayray518]

I called England in the mid 1990s and talked to a pharmacist (chemist) at Booths Pharmacy in London and she told me that Elmiron was approved there. I was so desperate I was thinking about going over there to try the drug. Meantime it got approved in the US. do you live in England?

[Ginny]

>every doctor/urologist i've seen has told me since i was diagnosed young it's likely >that the IC will "burn itself out" and i might just have to grumble on the way i am for >a few years, but i really can't ever see myself being IC free now it's dominated my >life for so long. was anybody else told this?

In the 20 years with IC I have never heard a Urologist discribe it as "something that will burn itself out".
Ginny

[mayray518]

I can believe a urologist would say that. I heard "You will have to live with it" and "You have nothing wrong with you" so I can believe that an uncaring, non-IC ueducated uro would say "it will burn itself out." But a good uro who knows a lot about IC would never say that. you need to change docs.

[jaime15]

Just as Mayray suggested.....I strongly suggest anyone to find another uro who adds in a line like that. Obviously they have no intention to read up or further educate themselves about IC.
So take your valuable time, and money also, to a more caring uro. I wouldn't waste another cent on him/her.

And Linz, it's different with everyone's remission, I'm sure. For instance, one patient can go into remission and dare not eat restricted foods, for fear of going into a flare. As for me, when I'm in remission, I've found I can eat lots of stuff I normally wouldn't dare eat.

I hope with the right meds you can someday experience a remission. It just takes the right combination.......

Take care and I hope to see you on this thread in the future sharing YOUR remission! :kissing:

[Cali girl]

The uro that diagnosed me said that my IC may go away in 20 - 30 years. I looked at her like she was crazy. I was thinkin' that I can't wait 20 - 30 years to feel better. Of course I did not know what IC was at that point.

Cali
:dogrun:

[steph4308]

Linz, Hang in there. I was diagnosed 21 years ago and went into remission for a long time without using Elmiron. I had hydrodistention, DMSO and lidocaine instillations. Over the remission period I still knew the IC was there, had moderate flares, and yearly UTIs, but basically I lived a normal life. I even ate no-no foods. I'm out of remission now but it was fun while it lasted. I send you wishes for a quick and long lasting remission!!!! Steph

[RedLione]

I came to this site looking for answers for those of us who have both IC and Fibromyalgia. I see many of you saying the Elmiron has helped - temporarily. That is my experience as well, but it seems to be the antidepressants they give me to help me sleep through the Fibro that undo the work of the Elmiron. If I stay on minute doses, I can tolerate antiD's, but it's not enough to really sleep. I'm STUNNED that they're still using Elavil for IC; I thought it was common knowledge that antidepressants irritate the bladder. If Elmiron isn't working for any of you, or if it works sporadically, are you taking antidepressants too? Every aid for Fibro, vitamins, supplements, etc., are just too hard on the bladder. I'm really tired of being tired!