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Carmilla

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Reply with quote  #1 
Hi, I would really appreciate hearing from anyone that has tried uromune. I was born with a chronic kidney condition after surgery at seven years old I was put on a prophylactic dose of antibiotics for 43 years. If I caught an Infection the antibiotics where changed until the infection cleared. I have found going through the menopause has increased the issues I have. After getting cystitis cystica I was initially put on hiprex which worked for a while. After further investigation it was found my bladder was causing problems. My consultant put me on Ilaluril and Overstin cream which I used twice a week.
I have been using ilaluril monthly for over a year now. I have tried to increase the time in between treatment but I can’t last longer than a month without getting an infection. The hospital have told me that ilaluril is only licensed for use for six months at a time with a break in between. The consultant suggested using Dmannose which I think is helping but is not strong enough if I get an infection and I’m also wondering if it’s okay to use it everyday long term. My consultant has suggested I could try uromune vaccine but I’m nervous about trying it and as I was born with chronic kidney problems I’m not sure how effective it will be. I have made some initial enquires and I’ve been told that it may need to be repeated. I’m also aware from previous experience that the safety guide around medication can change I was on septrim for many years before it was banned and I used to take macrodantin for 15 years on a prophylactic basis until I was taken off it over concerns it can cause fibrosis with long term use.
I welcome any advice.
Thanks Milly


ModeratorKate

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Posts: 1,962
Reply with quote  #2 
Hello Milly

Am sure others will offer you some advice soon, but thought I would post this link re D Mannose, and assume the consultant was aware of e.coli etc as infection when he suggested D Mannose,

https://www.waterfall-d-mannose.com/how-much-d-mannose-should-you-take.html

there is also a lot more information on the same site to assist you.
You may also read this link
http://www.chronicutiinfo.com/

and also remember that BHUK have a wonderful advice line,so maybe a call to them tomorrow, would help you.


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