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pozzy

Registered: Feb 1, 2011
Posts: 113
Reply with quote  #1 

hi just wondered if anybody takes or has taken the drug elmiron.i saw a urology specialist nurse today and she sugested i tried it. also vesicare if anyone has tried any of these with or without sucess i would love to hear your thoughts.

SandraB

Registered: March 29, 2007
Posts: 152
Reply with quote  #2 
I take both of these, and am doing fairly well on them (in conjunction with sticking very strictly to the IC diet). The vesicare gave me a dry mouth for the first few days and made me really sleepy, but that wore off within a week and since then I've had no ill-effects from it.  The Elmiron has been fine, but took a very long time to show any benefit; it was so gradual that to be honest it's hard to say whether it's helping or not.

Good luck with them - let us know how you get on.

Sandra.
pozzy

Registered: Feb 1, 2011
Posts: 113
Reply with quote  #3 

thanks very much sandra ,i am a bit hesitant about the elmiron as it says you can have hair loss.i already take gabapentin for pain so dont really know how different that is.i have had an awful lot of thrush which when my ic is bad i can never tell wether i,m getting the pain and burning from ic or thrush .so am now hopefully getting the thrush treated properly and hopefully will then know if some of my symptoms are due to thrush.i will let you know how i get on.

angel

Registered: Feb 4, 2011
Posts: 35
Reply with quote  #4 

iv been taking Elmiron for a number of years now and it has changed my life. I still have to be a bit careful about what I eat, but IM not as careful as I used to be.  Can still have bad days, but the flares arent so bad and I have days or hours in days when i feel normal.  I certainly live a pretty normal life.  I feel I now have control of my IC rather than IC having control over me. I also take Amytriptaline.  I feel I have no side effects, my ahir comes out a bit in the hair brush but not clumps or anything.  It took a good 4 or 5 months to really help, but my advice is give it a go and dont be afraid.

pozzy

Registered: Feb 1, 2011
Posts: 113
Reply with quote  #5 

thanks angel i am still waiting to hear from the nurse as she needed to speak to the consultant to see if i could have it she is also writing to my doctor about prescribing vesicare.

angel

Registered: Feb 4, 2011
Posts: 35
Reply with quote  #6 

Good Luck.  I hope you feel better soon

Ebony

Registered: March 10, 2011
Posts: 11
Reply with quote  #7 

Hi all, I was on Elmiron but it did not help me at all and in fact made me feel ten times worse.  My hair was coming out in clumps, I felt sick 24/7 and I was going to the toilet more often than normal. x

lci1

Registered: March 5, 2011
Posts: 46
Reply with quote  #8 
These seems to really show what people are saying about different things working for different people - this seems to me to be the biggest challenge as a newly diagnosed sufferer - finding what works!
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