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  • Jocotter
    replied
    I was in much pain in the spring and did my first series of instills at the doctor's office ending May 19th. At that time, I was mostly pain free for the first time in months. It was a wonderful few weeks. Last weekend, it came back with a vengeance. Omg, does it ever hurt! I am taking Prosed and Hydrocodone for the pain, but with little relief. So I have scheduled another series of instills starting next Wednesday.

    Mine have Lidocaine, a couple of other things mentioned by others, but not Elmiron. If this works again, I am willing to continue them whenever needed. Anything to get rid of this pain.

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  • L. Thomas
    replied
    I have been doing home instillations for several years. At first I did 3 a week but had to increase to daily for 2 or 3 months. Now I need them only 1 or 2 times a month. I had Elmiron in my instill for a while when I couldn't get heparin. Elmiron did not help my sympotms.

    Many MD use instills as a "jump start" for oral Elmiron. I had such success with home instillations I have never considered Elmiron. Dr. Dell has done research studies with Elmiron. He thinks it is promising but not enough to say it is the "treatment of choice" yet. And we agree, if something is working, why change. So as long as the instills work for me that is what I am sticking to.

    Don't think a thing about what you post. There a lots of people who basically have no one they can talk to about what they are going through. We have had so many different experiences with IC that "negative" and "discouraged" is not a new topic. Not only that, many times people can respond with options you or your MD have never considered.

    Leave a comment:


  • ICNDonna
    replied
    Solu cortef is a steroid.

    Donna

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  • Sharyn
    replied
    solu cortef

    Originally posted by ICNDonna View Post
    I've never had elmiron instilled, but there are people who are instilling other solutions and having some success with them. There were several different solutions that helped me, but I think the most soothing was solu cortef.

    Donna
    What is solu cortef? I have neve heard of it.

    Leave a comment:


  • Sharyn
    replied
    Dmso

    I have been using Heparin instills for many years and felt fine.
    Just recently My IC has been a bother. I wonder if some DMSO treatments will help. Any thoughts?

    Leave a comment:


  • ICNDonna
    replied
    Joslyn, if the instillations help, but only for a short time, you might want to talk to your urologist about learning to do them at home. There are some ICers who do instills every day, some twice a day, and it helps.

    Donna

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  • vivsmom
    replied
    Instillations

    I've started instillations also. The office says each doctor has a different cocktail. I can't help feeling like this is just guessing.
    The nurse yesterday forgot to put the meds I brought to the office in the instlls.
    My pain is about a 4/5 most days and I work and care for a toddler. I'm doing the IC diet and trying to be patient. Any thoughts from anyone out there?

    Leave a comment:


  • kadi
    replied
    Instillations can vary a lot by formula. Just because one doesn't work, doesn't mean another one may not give you much needed relief. I do heparin, marcaine & sodium bicarbonate instillations & those are a miracle for me. I tried heparin, lidocaine & sodium bicarbonate ones, and I tried DMSO ones. So, these were the 3rd type of instillations I tried & I'm glad I hung in there & continued to ask my doctor for something different.

    Wishing you better days soon,

    Leave a comment:


  • ICNDonna
    replied
    I've never had elmiron instilled, but there are people who are instilling other solutions and having some success with them. There were several different solutions that helped me, but I think the most soothing was solu cortef.

    Donna

    Leave a comment:


  • charlie's_love
    started a topic My experience

    My experience

    I always try my best not to post anything too negative, but I have to get this off my chest.

    The bladder instills of elmirion did work for me at first. But as the treatments went along, I got worse. I don't know if it was due to the treatments or that the treatments just weren't working.

    After my 6th treatment I had a very bad IC flare. I thought I got a UTI but turns out the culture was negative.

    I really need some encouragement right now. I feel like there aren't many options for me left. I can't help but feeling very depressed.

    The phrase "no cure" keeps coming into my head.
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