Remission questions

[linz]

Hello, I posted asking questions about remission before, but I have some others if anyone could help me out :)

I know the real answer to this question is "it's different for everyone" but is there like an average number of years people have IC before reaching remission? I've had it for 7 and in the past 6 months it's just gotten drastically worse to deal with. I feel like I'm a no-hoper for remission.

The only treatment I've had at a hospital is cystistat instills which didn't help. Since then my Doctors/Uro's have always been keen to just keep me on meds. I'm also happy to do this because the last hospital appointment I had for more instills I had to cancel on the day because I was just having the worst flare up and it would've been an hour drive with only one rest-stop between. (I don't drive myself and find it really anxious). But is there anyone here who's reached remission after only taking meds? I can't get elmiron over here because no GP or Uro is willing to have it imported over for me.

During remission, how careful do you have to be in regards of following IC Diet and such? Can you eat spicy foods and not feel affected by it? Can you have sex without any pain/urgency etc? How "normal" (I hate saying that!) does remission let you be?


Thanks a lot, I'm in a major flare today and when I get like this I always dwell on thinking my chances of ever reaching remission being 01%

[shennan]

i don't know about remission. don't think i have gotten there yet.
it is different for each person. gosh, i hope you can find something to help you.

put baking soda in all your drinks, that helps.
try prelief....if you can get it in the uk.

call the company that makes elmiron and ask them to send it to you in the uk. it is worth a try. maybe your doctor can call the company here in the us.

i take feeze-dried aloe vera capsules from desertharvest.com
you can buy it here on this link, too.
http://www.ic-network.com/shop/
the cystoq is good, too. it has quercetin/bromelain in it. good anti-inflammation anti-oxidants.

my uro told me that he used to give it (freeze-dried aloe vera capsules) to his ic girls before elmiron came out.
i get headaches from elmiron.

http://www.ic-network.com/md/worlddoctorlistings.html

this link has two doctors in the uk.

i wish i could send you mine. it is sitting in my bathroom cabnet. it takes a couple of months to work anyway.

please try the aloe vera and quercetin. only freeze-dried though. no liquid aloe vera. too acidic.

you have to be careful with acidic foods----cranberry, oranges, apples, etc.
no juices, no tomatoes. drink evian water.

eat some plain potatoes. this helps me. i can eat broccoli, string green beans, and spinash salads. i do better with steak/meat. you guys have mad cow, though. i eat shredded wheat for breakfast. you may need to try different things. they say white rice works, i think.

yes, you can have sex, but i always have to go to the
:toilet:
:lmao:

the best way is from behind sideways, vaginally. this takes the pressure and trusting away from the vulva and the bladder.

hope this helps....

hang in there!

good luck.

shenna


:cat:

[ICLori]

Hi, sweetie, hope you feel better soon. I know exactly what it's like to be in a flare for months at a time - no fun!

When I had my five month remission with Elmiron, I could eat and drink anything I wanted, including alcohol. I could do anything I wanted to, I slept through the night most nights, maybe waking once to urinate is all.

I am hoping you will get a remission like that very soon.

Blessings, Lori

[calmkiwi21]

how careful do you have to be in regards of following IC Diet and such? Can you eat spicy foods and not feel affected by it?
With me I can eat pretty much anything I want, I haven't had any pain by November it will be a year now. I do however get the frequency and some urgency since my bladder capacity is very small and hasn't had a hydro done in years. I can eat really spicey food though and have no pain afterwards which is a heavens sent.

How "normal" (I hate saying that!) does remission let you be?
I can do quite a bit medication free and can do almost anything that I want. I do still have to limit fluids a tiny bit when I go out due to capacity but I still get out more then I did when I first got IC :) Actually I've planned to head out to Downtown Toronto which is a 35 minute subway ride for me which before I couldn't do but now I do quite a bit better.
I hope that you get remission very soon..
:hi:
From
Amy

[green_the_fish]

My first big flare was in 8th grade. It lasted about three weeks, then I went into remission until my sophomore year of high school (now). During the remission, I would only get pain once in a while, maybe for a few hours every few days. Sometimes I would go monnths without pain, though. I could do whatever I wanted, it was great. Now, I've been in a full flare for the past month and a half :( It's terrible. I hope we both go into remission soon!

[ICNDonna]

I have to admit that even though I feel good the majority of the time, I pretty much stick to my IC diet. It's kind of like the reason I don't touch a hot stove --- it hurts! And if I eat a trigger food, I may not get a blister like from a stove, but I do get pain --- and it just isn't worth it. I do have to admit, however, that I do occasionally mess up and eat or drink one of my triggers and end up in a flare!

Hugs,
Donna

[linz]

i don't know about remission. don't think i have gotten there yet.
it is different for each person. gosh, i hope you can find something to help you.

put baking soda in all your drinks, that helps.
try prelief....if you can get it in the uk.

call the company that makes elmiron and ask them to send it to you in the uk. it is worth a try. maybe your doctor can call the company here in the us.

i take feeze-dried aloe vera capsules from desertharvest.com
you can buy it here on this link, too.
http://www.ic-network.com/shop/
the cystoq is good, too. it has quercetin/bromelain in it. good anti-inflammation anti-oxidants.

my uro told me that he used to give it (freeze-dried aloe vera capsules) to his ic girls before elmiron came out.
i get headaches from elmiron.

http://www.ic-network.com/md/worlddoctorlistings.html

this link has two doctors in the uk.

i wish i could send you mine. it is sitting in my bathroom cabnet. it takes a couple of months to work anyway.

please try the aloe vera and quercetin. only freeze-dried though. no liquid aloe vera. too acidic.

you have to be careful with acidic foods----cranberry, oranges, apples, etc.
no juices, no tomatoes. drink evian water.

eat some plain potatoes. this helps me. i can eat broccoli, string green beans, and spinash salads. i do better with steak/meat. you guys have mad cow, though. i eat shredded wheat for breakfast. you may need to try different things. they say white rice works, i think.

yes, you can have sex, but i always have to go to the
:toilet:
:lmao:

the best way is from behind sideways, vaginally. this takes the pressure and trusting away from the vulva and the bladder.

hope this helps....

hang in there!

good luck.

shenna


:cat:
Hello, thanks so much for all your advice. How beneficial would you say the freeze dried aloe vera have been to you? I might have to ask our local health shop lady if she stocks it.

Would the Elmiron company be able to send me some over without having a prescription? I don't suppose you know how to contact them? I've googled everything I can think of and can't find it!

[RedLione]

linz, when I started on Elmiron, it was not yet approved in the U.S. My uro was from Canada, and HE TOLD ME that Elmiron had been legal in Canada and England for 22 years! Maybe it goes by a different name there?? Anyway, I participated in the FDA study to get it approved here. After 4 months on it, I could eat or drink anything I wanted, with maybe one flare a year. I actually went off it for a year, and started it again when I started feeling bladder twinges. All in all, I've been on Elmiron for about 11 years, and I would call most of that time a "remission." I hope you can find it. For what it's worth, my uro told me it's a "capsule form of heparin."

[linz]

linz, when I started on Elmiron, it was not yet approved in the U.S. My uro was from Canada, and HE TOLD ME that Elmiron had been legal in Canada and England for 22 years! Maybe it goes by a different name there?? Anyway, I participated in the FDA study to get it approved here. After 4 months on it, I could eat or drink anything I wanted, with maybe one flare a year. I actually went off it for a year, and started it again when I started feeling bladder twinges. All in all, I've been on Elmiron for about 11 years, and I would call most of that time a "remission." I hope you can find it. For what it's worth, my uro told me it's a "capsule form of heparin."
Thanks a lot, I've asked all my GPs and Uro about it for years and they said it's definately not liscenced over here (only on a named patient basis but none of them will prescribe it for me because they're not willing to take responsibilty if something bad happens to me taking it) I managed to phone up a pharmacy over in America earlier today and they said I can't get it without a prescription :-( so infuriating! Apparently there were tests run for Elmiron in the UK in the last 2 years but they didn't liscence it because no one benifitted enough from it! I'm glad it works out for you though!

[linz]

I have to admit that even though I feel good the majority of the time, I pretty much stick to my IC diet. It's kind of like the reason I don't touch a hot stove --- it hurts! And if I eat a trigger food, I may not get a blister like from a stove, but I do get pain --- and it just isn't worth it. I do have to admit, however, that I do occasionally mess up and eat or drink one of my triggers and end up in a flare!

Hugs,
Donna


I can totally understand that, I think after dealing with IC for so long I wouldn't trust any "bad" foods to not cause it to flare up again if I reach remission!

[shennan]

http://www.orthoelmiron.com/

this is the link.

the aloe vera has to be freeze-dried.
don't know if they sell it there in the uk.

try those two links that i gave you.

i have been on aloe vera and quercetin/bromelain capsules for about a month and a half. i think it takes months for it to work, just like the elmiron.

i am doing the heparin instills with xylocaine and sodium bicarb. it has made my bladder more tender.
:dizzy:

http://search.yahoo.com/search?fr=fp-pull-web-t&p=elmiron

try this link.

my hubby is home. gotta go get a :kiss: from him.

:)

don't give up, just give in....
that's my motto....

shenna :cat:

[helenprestegard]

LInz I am from England, but have lived in the states for 6 yrs, I am now in Australia, MY email is haprestegard@yahoo.com, if you want I can give you some doctors names so u cant ry to get the elmiron.
I can also tell you what I use. Sorry you are in so much pain, it will go over, with a good diet, and good meds. I really never believed this, but it does. Hang in there.
Helenx

[roller]

Hello,
Does anyone else have to urinate more after taking Elmiron?