Hiprex

[Happylittlekitty]

Hello

I was just wondering if anyone would mind sharing their experience of hiprex please? I’ve been prescribed it today after having treatment for an embedded uti for a few months and instillations, I’ve read that it works better with vitamin c, have you found this to be true? Any and all advise welcome. Tia

Hiya,

I've been on and off it for a few yrs- also for cUTI. My bladder is quite sore and sensitive so I have some problems with it. Don't let this put you off - it's an amazing drug for those who can tolerate it. My advice would be to go easy until you know you are okay with it, eg try half a tablet twice a day for a few days and don't be surprised if you get frequency/urgency/possibly a bit sore - this usually settles. Then go up to the normal dose (presume 1 tab twice daily). Vitamin C- Hiprex works in acidic urine and vitamin c acidifies the urine so that's why they are suggested together. I would advise not going there until you are taking the full dose without issue as if your bladder is sensitive, vit c will exacerbate this. Good luck

Ps- instillations don't work. Have a read of James Malone-Lee's papers

How do you get embedded UTI recognised please? I am under NHS urologist for pelvic pain/pressure since a UTI last year but said no infection as cystoscopy clear , they do not believe in embedded UTI and diagnosed painful bladder syndrome . I cannot afford to go private and an a long way from London

@DameKatyDenisesClagnuts great name btw!
thank you this is so helpful, I don’t know anyone who has been through this so this is honestly great thanks. Il start low as you suggested and see how things go. Funnily enough I’ve been in touch with the malone lee clinic today in case things don’t improve, they have been really helpful, I didn’t go there initially as I’m up north so I went with a local consultant with a good rep instead, the problems started when he referred me back to the nhs and yes I agree re the instillations Ive stopped mid treatment and won’t be having more, i was desperate when I agreed and in that moment would have tried anything. Thank you again for taking the time to reply, I appreciate it.

@NadineCross
im so sorry you are having a rough time. Have you had any antibiotics? So i was told several times by my gp that I didn’t have a uti as the dip tests etc were fine, ive never suffered with bladder issues up until all of this so had no idea at the time how inaccurate those tests are. I became so unwell that I contacted a private consultant who also works for the local nhs hospital, I think it was about £170 to see him. He said straight away that he thought it was an embedded uti and that it won’t show on tests, as I had blood in my urine a camera was suggested to rule out cancer, as he works for the nhs I was offered private in a few days or nhs in a few months so I paid to have the camera and on the day he said he could see the inflammation and told me the infection had become embedded. I started antibiotics and estrogen cream the same day. If you can afford to see a consultant just for the initial consultation who is also nhs I would suggest doing that, I used the spire and asked for a urologist who specialises in woman. I hope you feel better soon, it’s absolutely miserable being in pain.

I'm up north too- I've been with the Malone-Lee clinic for 5.5 years - NHS couldn't do anything but that should be improving now with the recognition of cUTI. There's a consultant at The Freeman in Newcastle who collaborates with the Malone-Lee team and is on board with cUTI but he's not allowed to prescribe the high dose antibiotics that they do within the NHS. It's so frustrating

@DameKatyDenisesClagnuts

thank you, I’m going to try the hiprex for a couple of weeks and just go down to London tbh, I feel I need more antibiotics (I only had a month) and I know that will be offered there. I have nothing to lose and as you know it’s an absolutely awful existence. Can i ask which consultant you picked at the malone? I’ve been offered all of them with varying waiting times, it’s a little overwhelming. Also did you drive down or go on the train? I’m looking at my options trying to decide which would be easier. You’re right it is frustrating, I was never a sufferer before and had no idea how bad things could get or how little support is available unless you pay, appalling.

@Happylittlekitty I chose Rajvinder Khasiyra as she's a urogynae and I'm perimenopausal too so she's good at all that stuff. I used to see the Prof. He was so lovely and is such a miss. I get the train down then the tube to Oxford Circus- it's about a 10 min walk from there. I've done it in a day but also had a few cheeky weekends in London out of it

@DameKatyDenisesClagnuts thank you, you were lucky to meet him, I’ve heard wonderful things. Ok that’s all great thank you, you’ve been so helpful!

@Happylittlekitty good luck. It really is the most horrendous illness. I had it for 12 years before I got sorted and my infection has been v hard to get under control. Don't be me!!

@DameKatyDenisesClagnuts 12 years is absolutely awful, I’m sorry you suffered for so long, it’s been just over a year on and off for me which is bad enough, I can’t imagine 12 years. The worst thing for me is being told I don’t have an infection that I don’t understand my own body, almost treated like an attention seeking child who needs to just shhhhh. Why would anyone want to make repeated visits to a dr if they weren’t genuinely suffering, I don’t actually enjoy sitting in gp/hospital waiting rooms, I have a life! Rant over haha

@Happylittlekitty yep. The prof was furious about that.

Ladies am I ok to take Hipprex 500 twice a day as I find 1mg twice a day a bit harsh. Thank you

just to say i had recurrent issues for years like these and in the end with HRT i have had very few problems. that has been a blessed unexpected advantage of starting HRT.
i know they can test for hormone levels etc - they did and said nothing to worry about but i am convinced i was on endless antibiotics and hiprex and told again and again when i had issues that there was no sign of an infection etc etc when i am sure it was perimenopausal.

@suzieq24
hello, yes I would think that would be ok if you can’t tolerate them, I didn’t go on hiprex in the end I was put back on antibiotics long term instead and I’m still taking them now - I’ve been symptom free since before Christmas.
@Rosenoire ive heard this a few times, it’s a shame woman are treated like idiots who don’t understand their bodies. I’m glad the hrt is offering relief as it’s miserable, I’m not meno yet but I do use estrogen cream which has helped and would recommend it although had to get consultant to prescribe as gp wouldn’t as not in meno yet despite it being good for woman with uti issues as well as peri/meno. Just another stick to beat us with!

totally agree with you. it is extremely frustrating ! keep pushing away and i'm sure you will get it sorted ! keep us posted !

Hi ladies,

Please help me!!

I've had UTI symptoms for years! Same story, NHS urine test is clear! Went private for an enhanced test and cane back with scanty bacteria that was treated, but it did nothing alleviate my symptoms. I then got pregnant and my symptoms went away all together, I'm now 9 months postpartum and they are back!

I'm devastated- we all know how life ruining it is!

How do I get seen at the clinic in London? It's it extortionate priced?

I've seen De Sachin Malde who I know is on board with current research into UTI and is affliated with the London clinic.

Can you signpost me? I need my life back, its impossible to carry on with it!

I have a cystoscopy booked on NHS and I don't know it its worth it, should I just see a private consultant? I'm not going to lie I don't reallybhave the means to go fully private!

Shall I take the results from the cystoscopy and then take it to the London clinic and see where else we can go from there?

What do you think?

Any help appreciated 🥰😘

Hi @Ilovestevienicks123

im so sorry you’re having a tough time, I’m not sure how helpful I can be but I will certainly try and here for support regardless.
it’s a miserable thing to go through, I was not a sufferer prior to getting a chronic uti, i have only had a handful of infections in the past so this was a real shock to me and I was told by my consultant that the only reason mine became chronic was because I wasn’t given enough antibiotics to treat the original infection (dip tests were all negative of course!).
I’m not an expert but if you have suffered on and off for years it sounds like a chronic infection and would probably need long term antibiotics to clear, it can take years for some woman, I’ve just finished mine and I had 18 months but it varies I believe.
The Malone Lee clinic are the leaders but there are lots of consultants who follow the same protocol up and down the country, I am up north and I googled consultants in my area until I found one who did and I asked him on our first meeting. it wasn’t too expensive I think around £150 every few months when I saw him and about £50 for antibiotics month or or so but varies on what you need. The most important thing is to find a consultant who listens to you and is able to prescribe longer term, I’m sure I found a website of consultants who follow the Malone Lee protocol it might be worth looking online.
I had a cystoscope initially as I wanted to rule out cancer for personal reasons and the infection was seen at the same time but lots of consultants don’t recommend them, it’s a personal choice but for me something I had to do.

hth x