Hi everyone, my first time

[sherrie3646]

Hell'o, this is my first post and not sure how to start, but I have many questions. First, I was diagnoised in June with IC after having hydrodistention and cystoscopies. Went back to uro 6 weeks later with no improvements. He started me on elmiron 1x3 daily and flavoxate 200mg 1 or 2 pills 3xdaily when needed for pain. Its been 6 weeks and NO improvement. Can anyone tell me how long before I may see some relieve of my pain and discomfort?

[traceann]

Hi Sherrie! The Elmiron can take anywhere from 3-6 months to see improvements, and up to 6-12 to feel the full benefits. It's not a quick fix, but one worth waiting for! I have been on it since Nov of 2004, and I have to say, it was helping by 3 months, and it's just gotten better and better. Also I take the antihistamine hydroxyzine (Atarax/Vistaril), 25mg at bedtime. My doc explained to me that it can help the Elmiron work better/faster by blocking the histamines that attack our bladders. That way the good the Elmiron is doing isn't constantly torn back down. Here are a couple links that might help you with information on the hydroxyzine, it can be a big helper in the IC meds arena! :)And help you to maybe feel a little better a little quicker...you never know!

http://www.ic-network.com/guestlectures/parsonstranscript.html

http://www.ic-network.com/guestlectures/theotranscript.html

http://www.ic-network.com/askthemd/theo0503.html


I also follow the IC Diet, it's one of my biggest tools. As time has gone on, and the longer I am on my meds, it's getting less and less restrictive. My tolerances are going for "trigger" foods is going up.

Here's a link to the IC Diet foods list:
http://www.ic-network.com/handbook/diet.html

What I did was eat strictly out of the "usually ok" list, for 3-4 weeks or until my bladder started to calm down, then I started adding in things from the "may be ok" list one at a time. If it increased my symptoms, it went on my no-no list, to be retried at a later date. If it failed the test the second time, it went on permanent no-no list. As I have gone along, I have found I can eat many more things than I ever thought I would be able to, I thought I was doomed to boring and bland foods forever....LOL. It's only restrictive in the beginning, to give your bladder a chance to calm down!! ;)

I hope this helps a little bit, and once again, welcome and I look forward to seeing you around the boards!! ;)

Hugs!

[sherrie3646]

Thanks traceann for all the info. I am going to view all the sites and I see my uro in about 5 wks. and will mention hydroxyzine. You seem to have control over your IC. I hope to some day too. Thanks again.

[Tracey5399]

Hi Sherrie,

I am new here also, i was diagnosed in July. What Tracey said is great advice, she has been an inspiration to me. I am constantly on here asking questions and throwing pity parties for myself LOL. The women/men here have been so helpful & caring, and their suggestions are wonderful.

I have been taking the Elmiron since 7/18/05 i take 6 a day, as well as Elavil this can also help w/the chronic pain as well as helps me sleep ( most of the time ). I can't say i feel that good, well because i don't LOL, however at the beginning i felt awful 100% of the time, since i only feel awful 95% of the time. So i believe as Tracey said, that very slowly it is working. I like instant gratification and of course we want to feel better now. Unfortunatly it doesn't work like that. This is a very long process. It's confusing ( for me ) as well as overwhelming to have to change your diet, activities pretty much everything. Also devestating. HANG IN THERE!!!!!

So i'll tell you what they told me when i first came here. You are in the right place. Use the boards and the world of information you will receive here. You can *****,moan share pretty much anything you need to and their will always be someone here willing & wanting to listen & help. It's an awful disease, but you get to meet such beautiful people.

You can PM anytime, hope you feel well soon,
Tracey :)

[traceann]

You are very welcome! It's been a long road, like Tracey said, it's hard, we all want to feel better NOW, lol, definitely want instant gratification!! :biglaugh: I am no where near the misery I was in last November...it's all been diet, Elmiron, Ditropan & Vistaril...My world is a heck of a lot different now than it was then! Still have aggrivating days, but I guess that's the nature of the beast, I just know now it won't last forever....

I am so glad that Tracey also mentioned the Elavil (thanks Tracey, I forgot about that one! ;) ), that has helped alot of people with the pain.

And one more time,Tracey is also right when she says this is the right place, yep you can rant, rave, cry, laugh and ask all the questions you want to. And there's other things to talk about also, other boards, for humor, movie chat, book chat, etc....


Hugs!!! P.S. Tracey, you are WAY toooooo kind!! LOL :angel:

[traceann]

Oops, one more P.S. to Tracey, I love the pharmacy idea!!! We'd all be our biggest customers!! LMAO!!! :)

[Sarojini]

:welcome: to the ICN... definitely read the sites you were given in a previous post; they are full of wonderful information. :)

Elmiron can take forever to work, so often urologists will prescribe other medications that work in the short-term so you can feel better while you wait -- hydroxyzine (Atarax/Vistaril) is one of them, Elavil is another. There are many treatments out there, and if you read up about them in the Patient Handbook, you can take some information to your doctor and discuss a treatment plan that could really help.

good luck :grouphug:

[sherrie3646]

Thanks Tracey5399 and Sarojini for your replies. It is so nice to hear that I am not alone. Another question to anyone- have you ever used Detrol LA. Last week I went to my family Doctor to see if he could give me something to help with getting up two to three times a night to go. He gave me 4 wks. samples of Detrol LA. I took them 3 nights in a row and had to stop because of dry mouth and they seemed to make me tired. Maybe when my work slows down I'll try again or maybe the side effects would go away. Thanks

[SharonA]

Hello Sherrie and :welcome: to the ICN...so glad you came aboard.

I could not take Detrol, Detrol LA or Ditropan because of retention. And the dry mouth was sooooooooo bad. My tongue would stick to the roof of my mouth and my gums would hurt. It was horrible.

[emilyrose197377]

:welcome: to the icn.

[csocain]

Hey, Sherrie. Welcome to the ICN. It is truly a great place to be. Sounds like you are getting a good start on feeling better. Praying that you get better all the time. Blessings of hope and peace to you and yours.

[Oxana]

Hi, Sherrie and :welcome:
It is not necessary to wait for 5 weeks. You can call to your doctor about sooner appointment.
I took the advice here about Atrax and cald to my uro about appointment. I will go tomorrow and ask him about Atarax/Vistaril. I'm still not sure about Elavil, many ladies wrote that they gaine weght by using this medicine.
Don't worry, just think about positive things and everything will be OK, even this process is slow.

[curlycue]

Welcome and Good luck you are in great company here with these ladies, they know more about this illness than the Doctores themselves.

[VickiB]

Hi Sherrie and welcome to ICN!

Everyone's already covered the basics, so I'll just add another quick thumbs up for the IC diet. Please do check it out (the last link Tracey provided)! Changing my diet dropped my frequency, urgency and pain dramatically in a short period of time.

Glad to have you with us!

Vicki