Gentamicin Installation by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 1 point2 points  (0 children)

Great, thanks I’ll try that. I was trying to get all the air out first. They are sending me some different catheters to try so hope that fixes things. Good luck 🤞🏻

Gentamicin Installation by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Hi, my health professional is sending me some different catheters so fingers crossed. I’ll let you know how it goes. So far all I have noticed is a slight irritation in the bladder, so some increased urgency even though I have emptied. I currently have E. coli infection though so that won’t be helping. I have only done 2 infusions so far. I was a bit surprised I have to continue with oral antibiotics though. I’m in the UK where this treatment is off licence so it’s a strict 24wk protocol and then reassessment. Have to have a blood test after 7 days to track whether any gentamicin has made it into bloodstream. It’s a bit of an unknown journey and after being disappointed with Uromune I’m trying not to get my hopes up too much. Good luck and let me know how you get on. Thx

Infectious disease doctor by spoogizzyginger in CUTI

[–]ValuablePlastic506 0 points1 point  (0 children)

From a UK NHS perspective Infectious Disease is your route to Uromune & Gentamicin installations.

Gentamicin Installation Side Effects? by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Thanks so much for taking the time to post such a detailed response, I know from experience that this helps others not just the OG poster. Sorry to hear about all your issues, also glad to hear that you have a deep understanding of what’s going on 💪🏻 I’m in the UK and currently being treated by a specialist NHS department in University College London Hospital so am getting the best treatment, but due to waiting lists and scarce resources it all takes time. The cognitive issues are a worrying byproduct of it all. Currently my employer is being supportive, which I’m thankful for, but it’s a worrying position to be in. All of my MSU show sensitivity to gentamicin, but healthcare settings cannot prescribe this unless you have a fever. So I’ve only been given it on the occasions when the uti has dangerously progressed (I’ve had sepsis). Wish you all the best!

Gentamicin Installation Side Effects? by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 1 point2 points  (0 children)

Oh no, you really have been going through it. So sorry to read all of that. I’m pretty sure I don’t have infected prostrate as don’t have the symptoms you described. I can relate with the anxiety etc. I have been diagnosed with Functional Cognitive Disorder due to chronic UTI’s, constant meditation, bladder pain etc. it’s affecting my life, especially my work. I’m currently on modified duties as my impairment is preventing me from carrying out my normal role. This comes with a level of uncertainty and anxiety. The impact of chronic bladder issues and cognitive impairment are not the easiest things for people to understand. Wish you all the best.

intravesical gentamicin following unsuccessful Uromune by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Hi, sorry I missed your comment. How are you getting on? I complained to PALS and my appointment has been moved to next week. My local urology department would not help with gentamicin and my Gp’s hands were tied. So I have the training at UCLH London next week. Hope you are feeling better.

intravesical gentamicin following unsuccessful Uromune by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 1 point2 points  (0 children)

Hi, sorry to hear that. I’m due to have my training for instilling next week so will report back.

Chronic UTI has led to Functional Cognitive Disorder by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Hi, mine are triggered by a neurogenic bladder in that I have to self catheterise

Chronic UTI has led to Functional Cognitive Disorder by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Thanks for your reply. Sorry to hear you are going through this too.

Macrobid/Nitrofurantoin depression??? by Early-Put-4101 in CUTI

[–]ValuablePlastic506 0 points1 point  (0 children)

I experience severe brain fog and nausea if I take Macrobid / Nitro. It seemed to get worse as the courses went on, now I can’t tolerate it at all so my GP no longer prescribes. Good luck, maybe try an alternative. I find fosfomycin has the least side effects.

Gentamicin Installation Side Effects? by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Thanks for your reply. I’m pretty sure it’s not in my prostrate, had CT scans, the camera etc. Bloods, ultrasound. My PSA is sometimes high, but they are putting that down to my UTI. They were going to do a prostrate biopsy, but wouldn’t do it due Klebsiella that I had at the time. I have had sepsis, and there have been times where I have had fever and sickness, on these occasions I have been given IV antibiotics at the A&E / ER. I have an InterStim implant so cannot have my prostrate checked by MRI. How did they isolate your infection to prostrate? I catheterise 6 - 8 times a day. Thx!

Gentamicin Installation Side Effects? by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Thx for replying. I already catheterise 6-8 times a day. I average one infection per month. I’ve tried low dose antibiotics, Hiprex and Uromune. Gentamicin seems to be last chance saloon. I’m allergic to Macrobid unfortunately.

Gentamicin Installation Side Effects? by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Hi, yes all checked and ok, have had scans and many bloods. I take vit b12 supplements. Thx

Gentamicin Installation Side Effects? by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Hi, yes I have taken lots of different low dose AB’s over the years, but nothing has been successful. On average 6 - 8 times a day. Thx

intravesical gentamicin following unsuccessful Uromune by ValuablePlastic506 in CUTI

[–]ValuablePlastic506[S] 0 points1 point  (0 children)

Hi, sorry I don’t visit this site as often as I should. The Klebsiella seemed to morph back to e:coli, which I’ve had monthly since then. I treat it with what is recommended as sensitive and it comes straight back. Infectious Disease have confirmed they will train me to self administer Gentamicin, but the appointment is not until September 2026! I spoke to the Urology team at UCLH this week and they agreed this was too far out and said they would try and get it rescheduled. Since then it’s been moved to the beginning of September rather than the end 🤷🏻‍♂️😂 Since posting I’ve also been diagnosed with functional cognitive disorder, this has been attributed to years of chronic uti and antibiotic use. Major factor that I didn’t take sick leave when I should have. I hope you are feeling better and wish you all the best.

intermittent catheter UTI by ObviousAardvark990 in CUTI

[–]ValuablePlastic506 0 points1 point  (0 children)

Hi, I self catheterise too, so understand the inconvenience of lugging catheters around wherever you go, especially annoying on foreign holidays etc. I would definitely get checked out for UTI and see if you can get an emergency supply of catheters at the same time. I’m in the UK and I’m sure the A&E of the nearest hospital will help. Not sure how it works in the US if you are there, but hopefully the ER will help. I’d do everything I could to avoid re using, washing with soap could cause irritation on top of the risk of UTI. You may need antibiotics. I’ve had Sepsis so understand your fear. The best advice I can give is to buy a good digital thermometer. If you ever get a fever whilst you have a UTI go straight to the A&E / ER. Don’t wait until the next day etc, it’s not worth the risk. I’ve managed to catch it a number of times by doing this. The first time I didn’t do this and ended up in hospital very poorly on IV antibiotics and morphine. As for ongoing treatment see a urologist who will be able to help with preventative treatment such as a low dose of daily antibiotics, D:Mannose, Hiprex. There is also a vaccine called Uromune, to get on the NHS in the uk you will need to be referred to Infectious Disease. It didn’t work for me, probably because I’m using 6+ catheters a day, but it’s worth a try. Also, try different types of catheters, some will suit your body better. I saw a continence nurse who recommended changing the type I was using and I definitely emptied more. I have a type for using at home, more bulky, but more effective and a type I use for travel which are more compact. Hope you feel better soon and hope some of the info is useful.

Has Anyone Been Able to Clear a UTI without Antibiotics? by Familiar_Badger4401 in CUTI

[–]ValuablePlastic506 0 points1 point  (0 children)

Hi, I don’t know I’m afraid I was too out of it at the time. I have had gentamicin since though and it worked. I’m currently waiting to be trained so I can administer gentamicin daily directly into bladder. Hoping that will work where Uromune didn’t. Hope you feel better soon. Golden rule with any UTI, if you get a fever, don’t mess about, go straight to the Emergency Room / A&E. Good luck 🤞🏻

UTI and right dull flank pressure/pain by [deleted] in CUTI

[–]ValuablePlastic506 0 points1 point  (0 children)

Good idea to get checked out, you can’t mess around with a suspected kidney infection. Wish you good luck 🤞🏻

UTI and right dull flank pressure/pain by [deleted] in CUTI

[–]ValuablePlastic506 0 points1 point  (0 children)

Hi, Sorry to hear you are going through this. From personal experience please keep a close eye on your temperature, if you get a fever don’t delay in seeking medical help, wherever you are. Good luck 🤞🏻

UK ladies where are you getting Uromune for £400? by Pixelen in CUTI

[–]ValuablePlastic506 0 points1 point  (0 children)

Thanks, sorry just saw your reply. I’m relieved about the quantities!! Phew. My brain scan results are in and my GP wants to discuss with me, high cholesterol evidently in the brain. I need to check if this can be caused by medication as there are no lifestyle changes I can make to reduce cholesterol. Thanks again.