Announcement

Collapse
No announcement yet.

IC Cure

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • mary124
    replied
    I have been on Elmiron since 1997; and I expect to be on it the rest of my life.

    Leave a comment:


  • ICNDonna
    replied
    During the clinical trials before Elmiron was approved by the FDA, the percentage of people who found to be helped was 38%. There are some medical authorities who feel the percentage is a little higher than that. The great thing is that many among that 38% find it almost completely eliminates their symptoms.

    Donna

    Leave a comment:


  • jen74
    replied
    I think the cure for IC or should I say when there ever is a cure, it is going to be different for everyone. I dont think everyone has the same IC. It it caused by different things I think. I believe mine is autoimmune in nature, though I could be wrong. Elmiron is only known to help like 30% of people, thats it. It does not have a huge success rate from what I have read.

    I would say that it depends on what is causing the IC to begin with. If the thing that is causing her IC gets treated and cured, then maybe the bladder will heal. This disease is so misunderstood, even by MOST doctors. They dont have a clue what IC is or what causes it. They are just guessing like everyone else. The human body is just to complex and we dont have all the knowledge to understand what makes these things happen to us or how to fix them.

    I dont like to say that there is NO cure for IC, rather that it just has not been found at the moment. And again, I think the when eventually there is a cure, the cure will be different for all. That is just my opnion. Also, Elmiron is only known to put a temporary protective layer in the bladder, like a coating. But if you stop the med, then the coating is gone. That is why it has to be taken three times a day otherwise it would wear off.
    Jen

    Leave a comment:


  • shell
    replied
    Unfortunately there are urologists out there that do not believe IC is a valid condition and so don't really know anything about it. I had a urologist tell me that removal of the bladder was my only treatment option - and my symptoms are relative minor compared to some of the people who post on these boards.

    It's so important that we as patients (with IC or any other condition) take the time to do some research ourselves and not just blindly trust anyone with an MD at the end of their name. Doctors are people too. Most are great, but as with any profession there are some that are less than the best. And the networking of patients like on this web site is so helpful with obtaining information.

    Leave a comment:


  • Trishann
    replied
    My urologist said that I will be on Elmiron for the rest of my life. Elmiron does not cure it but helps with coating it and get some relief. Maybe this person misunderstood the doctor or the doctor is not very updated with IC. Hope your friend do get some relief with it though.

    Sending hugs, Trishann

    Leave a comment:


  • Roxie2007
    replied
    My urologist said that if you stop Elmiron......you lose what you have gained as far as pain and lining. I hope that she just misunderstood and not that her dr. actually told her that! What a misjustice that would be! Roxie

    Leave a comment:


  • L. Thomas
    replied
    That's exactly what I was thinking, but I didn't say it. I guess we will wait and see.

    She has been on elmiron for almost a month and has had great results. It may be that she does have her "cure".

    I just didn't want to be the "little raincloud" over her sunshine.

    Leave a comment:


  • ICNDonna
    replied
    I can't believe a urologist actually said this. She must have misunderstood.

    Donna

    Leave a comment:


  • L. Thomas
    started a topic IC Cure

    IC Cure

    A friend told me today that her urologist told her that her only options were hydrodistention or Elmiron. She said the urologist told her that if she took Elmiron for 2 years that she would be cured from IC forever. The urologist said that after 2 years of Elmiron the bladder lining had repaired itself and was normal. I didn’t say anything but I thought it. Have any of you heard this?
Working...
X