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Bananacarnival

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Posts: 10
Reply with quote  #1 
Hi,
I am almost constantly suffering from a uti, it's been going on for years. I've had over 20 courses of antibiotics but they never really shift anything. Two years ago I had an antibiotic resistant strain of e coli, this year it was Strep B throughout the year and now I've got enterococcus! I don't understand. In constant burning pain and chained to the loo. Urologists are absolutely hopeless.
I cried at hospital today and the nurse suggested I just take hiprex everyday. I took it for a while but got scared about the fact that it turns into formaldehyde in the bladder.

Surely if formaldehyde is carcinogenic and we're warmed not to breathe it in, how about ingesting it?

I've heard women have been on it for years so it must be safe, right?

Thank you
Moderatorsusan

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Reply with quote  #2 

Firstly to try to understand that UTI infections are multi bacterial but the medical profession struggles to deal with this notion. Clinicians to look for one single pure bacterium and with a UTI, tests focus on ecoli because it is so easily grown within the window of culture rather than allowing a longer culture which would grow more bacteria giving a truer picture. Sadly it is likely to be the same infection you are dealing with but with different bacteria being dominant and may have become embedded into the bladder wall hence the fact you can't shift it.  

Hiprex is a medication that was prescribed for many years but fell out of fashion when antibiotics came on the scene.  You are right in saying that its active ingredient turns into formaldehyde in the bladder.  An acidic urine usually means that bacteria cannot replicate and set up pockets of infection and will thus die.  At present there are a number of studies going ahead as to its effectiveness in comparison with low dose prophylactic antibiotics for recurrent UTI with the results being published this year - so your nurse was right in recommending it.  Be reassured that the formulation for Hiprex would be carefully manufactured to ensure that it would not become carcinogenic in the bladder.  No specialist would prescribe it if studies showed increased levels of cancer risk and the manufacturer would have to withdraw it from production for safety reasons.

I would contact the BHUK office to find out more but you may be interested in this paper published last year by the country's only NHS clinic for recurrent and chronic UTI - you will note that they agressively treat chronic and recurrent infections with high dose, long term antibiotics AND Hiprex with patients seeing a benefit.  Yes it means long term antibiotics but these give many patients (but not all) a quality of life they did not previously have.

BHUK can give you further details for specialists if you want to follow this up.

https://link.springer.com/article/10.1007/s00192-018-3569-7

Bananacarnival

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Posts: 10
Reply with quote  #3 
Thank you so much for your reply Susan. I did try ringing the office today but ended up leaving a message. Hopefully I'll be able to speak to someone tomorrow, I'm a member.
Thank you for reassuring me. The article is interesting but I'm quite scared of being on long term antibiotics and being one of the "few" who it didn't work for - at the expense of my already poor gut health.
It's all very confusing. I'll try to call again tomorrow.

Best wishes
Loobyloo

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Posts: 49
Reply with quote  #4 
Do yourself a favour, get on that Hiprex.  Stop agonising and being in agony.  First try to make sure you have an infection under control, sounds like you need long term antibiotics (you will have to find out about this from the office).  I was offered Hiprex 9 years or so ago.  I was prepared to try anything.  
Bananacarnival

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Posts: 10
Reply with quote  #5 
Thank you loobyloo
I will. Is it best to take it in the morning or at night?
How long did you take it for?
Loobyloo

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Posts: 49
Reply with quote  #6 
Doc should give you all the info you need.  But you take twice a day. 

Babz

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Posts: 33
Reply with quote  #7 
Im trying hard to get help with multiple uti infections that when cultures sent to lab show nothing and my GP is not very helpful any answers i would appreciate and intend to see the Professor after Chritmas
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Barbara Shervell
Bananacarnival

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Posts: 10
Reply with quote  #8 
Thanks loobyloo
Babz I understand and do hope that the Prof can help you
Morse

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Posts: 40
Reply with quote  #9 
I finally got rid of a long term chronic UTI by taking Hiprex twice a day for one month, directly after finishing a course of antibiotics. Before taking Hiprex , the infection always returned immediately after finishing each course of antibiotics. Hiprex makes all the difference and was recommended by my Urologist 
Babz

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Posts: 33
Reply with quote  #10 
Thank you for your replies im so fed up n my GP is not very helpful ..
Im determined to get to see the professor but find going alone to London daunting .
Its so good to have help here .
Thank you Babz x

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Barbara Shervell
Loobyloo

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Posts: 49
Reply with quote  #11 
Babz, be strong.  How far is the journey, probs a couple of hours at the most, people fly over the Atlantic to see Prof M L.  GPs' hands are tried.  They have to prescribe according to regs and they only have the NHS testing at their disposal.  Anyone with a chronic Uti problem is obliged to go private, even then, choice is limited and wait times are long.  This is the brutal truth. 
Bananacarnival

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Posts: 10
Reply with quote  #12 
Thanks Morse that's really helpful info.
ldenarde

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Posts: 1
Reply with quote  #13 
I am 72 years old with on going uti for over 4 years,  antibiotics same story with in a week it back, I have NO sys toms other than feeling all of  a sudden a Mac truck hit me and flank kidney pain, I have had every test you can think  of gone on low dose for 100 days  all that stuff, I have a hygiene regiment like no other, My Dr finally sent me to infection control had a long talk and he came up with me trying Hyprex, I am waiting on it to arrive- So just wondering what to do my problem is most all drugs go the opposite with me SO I AM very leery I am so sensitive and I feel like the uti  rule my life as it just puts me down , hard to plan anything-
I think my biggest concern is turning to formaldehyde  , this cant be a good thing, or is it? how much - Also wondering dose it also block good bacteria , like probiotics?  Happy to find this dialog as it just is not been dealt with enough on a DEEPER level, like growing the culture longer , how to identify ,  Thanks Linda 
Morse

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Posts: 40
Reply with quote  #14 
Linda,
Its best not to over analyse. Hiprex is perfectly safe and is widely recommended by Urologists. It turns your bladder into a hostile environment for bacteria, which is exactly what you want. Take it twice daily, morning and at night. You can always take extra probiotics to balance things up. Good luck
ModeratorKate

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Posts: 1,974
Reply with quote  #15 
Hello Linda
Welcome to our Forum,am sure you will find much to assist you,and 'Morse'has already, given you some good advice.

Whilst we are Uk based,you  can still contact BHUK e.mail or phone as  they have so much more they can offer you.

I wonder also if you have contacted these, that maybe nearer to you.

Interstitial Cystitis Association (ICA)
100 Park Avenue, Suite 108A
Rockville, MD 20850 USA
Tel: 800-HELP ICA (800-435-7422) 
http://www.ichelp.org
ICAmail@ichelp.org 

Interstitial Cystitis Network ICN (National)
4983 Sonoma Highway, Suite L
Santa Rose, CA 95409, USA
Tel: 1-707-538.9442
http://www.ic-network.com 
jill@ic-network.com

Kind regards and do keep posting, we will always listen


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