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  • Iceblink_Luck
    replied
    Thanks again guys! I'm not sure how long I should take the Elmiron before I talk to my Dr. I don't have a lot of pain, but the constant urgency. Sometimes I have to go to the bathroom right after I go! I called my Dr. after a week and she said I should do the diet and train my bladder. Anyone train their bladder? I've been doing the diet, but still find little relief...

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  • Roxie2007
    replied
    HI! Actually you take Elmiron the rest of your life of you have IC. You check in with your dr. ever 6 mo......if you are doing ok......sooner if you are having problems. It's a long term medication. If you stop taking it......the symptoms return. I'm pretty much pain free now and thrilled about it. I still adhere to the IC diet very strictly though.
    Freeze Dried Aloe Vera isn't a prescription. You can buy it right here on this site now thru Desert Harvest. Good luck! Roxie

    Leave a comment:


  • lan
    replied
    Hi Iceblink. I am sorry to hear that you have IC - but you are not alone. I agree with some of the others. Since Elmiron can take a long time to become effective, you might want to ask your doctor about other treatments that can help in the short term. Elavil helps me with frequency (It is the only treatment that I currently use). And if you read through these posts you will find treatments that others have found helpful. I hope you can find a treatment that makes you feel better. Sending healing energy...Linda

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  • lisathebrock
    replied
    The Squeaky wheel..

    Hey Iceblink,
    I too took elmiron and it did little to quell the symtpoms I had. The side effects were even worse than my disease. I lost a lot of hair and was riddled with insomnia. Give it a few weeks and if you don't get any relief go back to the doctor. YOU ARE ONLY SUPPOSED TO HAVE ELMIRON SIX MONTHS AT A TIME they told me. The amitryptoline and urised worked better for me than the elmiron. It is rough going, but just keep at it. You will get a lot of opposition because all of us with IC look fine on the outside and it makes people confused when we are down and out. Set your expectations at a reasonable level and don't be too hard on yourself if all you manage to do is take a shower and brush your teeth. Write in a journal and come back to this site often to vent or just so you know you are never alone. Find one good thing to write about every day and do it. You will be in my prayers.
    Originally posted by Iceblink_Luck View Post
    Hello!!!

    I was diagnosed with Interstitial Cystitis last month. Starting last December I started having problems going to the bathroom a lot at night. I thought I was drinking too much liquid and so I cut down, but it didn't help. In January I went to the ER 3 times for UTI's. I didn't have a primary care Dr. I just got my insurance and was just out of college. The first time they did the test and they found I had a UTI and gave me some medication I was to take for 3 days to take care of it. I came back the following week after the medication wore off. Then, they put me on it for 10 days. From January to May I've been to the Dr.s with UTI's. They did 4 cultures and they all came back negitive. Then last month they did a cystoscopy and found I had IC. Since then I've been trying to keep with the diet and I've been on Elmeron for the past 3 weeks. I've seen little improvement, but I'm assuming it takes time. I'm also on Trazodone for insomnia, which helps me go to sleep. My symptoms tend to get worse at night. Is this normal? I have some pain, but it's more the frequency that really gets to me.

    I like to sleep on my stomach and that tends to irritate my bladder. Sometimes sleeping on my side bothers my bladder as well? Anyone else have this? How long does Elmeron (Spelling?) take to kick in?

    Thanks and you guys seem to be a friendly bunch!!

    Leave a comment:


  • Iceblink_Luck
    replied
    Wow! Thanks for the fast replies! I am just starting to be strict about my diet. My Dr. also said I should "train" my bladder by peeing every hour one week then an hour and a half the next and then 2 hours the next..etc. Until it's managable. I'll keep on the Elmiron. I haven't tried Azo or Freeze Dried Aloe Vera. I'll look into Azo since I don't need an RX for it. Thanks!

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  • Roxie2007
    replied
    HI Iceblink!
    Welcome! As Donna said this is a great place to be if you have IC!
    It's taken almost about 9 mo. before I started feeling the effects of Elmiron. It's great stuff though so don't give up on it! I also take Freeze Dried Aloe Vera which works like Elmiron but naturally and coats the bladder for pain. You might ask your dr. about Elavil. It really helps calm the bladder when you are having frequency and urgency. It's such a pain having to get up in the night SO many times to use the bathroom......then you are tired all day....it's a vicious cycle!
    Have you tried the over the counter Azo? It helps pretty quickly to calm the bladder down when it's spasming.
    I hope you find some relief soon! Roxie

    Leave a comment:


  • ICNDonna
    replied
    I'm glad you found the IC Network. You'll find a lot of helpful information here. To answer your question, elmiron can take six months or longer to become effective. Hopefully diet will help you soon. If you don't feel better soon, please contact your doctor about other treatment options.

    Sending healing thoughts,
    Donna

    Leave a comment:


  • leelee88
    replied
    Hello and

    I have heard that Elmiron can take anywhere from 6 months to a year to feel the full effects of the medication, but some have reported sooner..

    Ronda

    Leave a comment:


  • Iceblink_Luck
    started a topic New to the forums and IC

    New to the forums and IC

    Hello!!!

    I was diagnosed with Interstitial Cystitis last month. Starting last December I started having problems going to the bathroom a lot at night. I thought I was drinking too much liquid and so I cut down, but it didn't help. In January I went to the ER 3 times for UTI's. I didn't have a primary care Dr. I just got my insurance and was just out of college. The first time they did the test and they found I had a UTI and gave me some medication I was to take for 3 days to take care of it. I came back the following week after the medication wore off. Then, they put me on it for 10 days. From January to May I've been to the Dr.s with UTI's. They did 4 cultures and they all came back negitive. Then last month they did a cystoscopy and found I had IC. Since then I've been trying to keep with the diet and I've been on Elmeron for the past 3 weeks. I've seen little improvement, but I'm assuming it takes time. I'm also on Trazodone for insomnia, which helps me go to sleep. My symptoms tend to get worse at night. Is this normal? I have some pain, but it's more the frequency that really gets to me.

    I like to sleep on my stomach and that tends to irritate my bladder. Sometimes sleeping on my side bothers my bladder as well? Anyone else have this? How long does Elmeron (Spelling?) take to kick in?

    Thanks and you guys seem to be a friendly bunch!!
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