update re UTI and EColi

[marie66]

Hi guys, I’m still struggling on with this and waiting for Urology appointment! I’ve now been on antibiotics and steroids every day for 7 months and off methotrexate for 10 months, just hydroxychloroquine and anti inflammatories!

Results are dire, the RA has run rampant. I now have increased pain almost everywhere, particularly in shoulders, hips, lower back alongside the usual hands, wrists, ankles and feet. After a bit of a hissy fit with GP, Urology have agreed to stop antibiotics to allow me to reinstate Methotrexate but I’ve to add a urinary antiseptic instead! Anybody have any experience of this?

Thanks for any info. Marie x

[Bella59]

Sorry to hear you are still waiting for appointment.I myself have overactive bladder but last year ended up with four uti's in a space of couple months.Results were like you e coli I was tried on different antibiotics.I had to wait 8months to see urologist,I was prescribed Methenamine 1g twice daily which helps to sterilize the bladder while waiting. I found this med helped and only had one more infection.I was seen and had cystoscopy but thankfully nothing untoward was found.He also prescribed a tablet for urgency which is helping slightly.I hope you hear soon I asked my gp to try and hurry up appt. Good Luck.x

[marie66 in reply to Bella59]

Methenamine 1g twice daily. I think that’s the same drug as Hiprex. I’m weaning of Nitrofurontin this week first and we’ll see how it goes next. M x

[Summerrain14]

Hi. I am so sorry to hear of all you are going through. I am being treated for recurrent UTI’s, over active bladder and intestinal cystitis. I have been admitted to hospital over 10 times with UTI and kidney infections. I am now under Urology who have been amazing. I was a preventative antibiotic but now on Hiprex which is the urinary anaesthetic meds have bladder instillations monthly and several meds for the over active bladder too. I am on sulphalazine, steroids and biologic amgevita for my RA.

I could continue my RA meds with the preventative dose of antibiotics so not sure if this could be an option whilst you wait to see urology. My rheumy team advised me of this.

I still have my UTI’s but so much less than before. Urology have been and are my best team so far bless them. If I can help in any other way please do let me know. x

[marie66 in reply to Summerrain14]

Thank you. I’m to wean off nitrofurontin (1 daily antibiotic) and the steroids and move to hiprex (urine antiseptic) instead so I can get back on methotrexate again next week.Urology emailed my GP with this instruction until I get to their clinic. Rheumatologist says it’s important for my joints to get back on my metaject asap. I’m hoping things start to settle down soon. M x

[strawclutching]

Hi Marie. Just wondered if you've tried D-mannose powder? I've been free of UTI's for over a year since taking this so called 'sugar' which you dissolve in a small amount of water, taking a bigger drink an hour later. D-mannose passes into the bladder without being digested, and while it sits there it attracts bacteria from the bladder wall. After about an hour and with the bigger drink you pass urine which apparently expels the bacteria with it. I've been plagued with UTIs all my life, so have a lot of internal scarring which is painful, even without an infection.

[marie66 in reply to strawclutching]

Thanks so much for this. If the latest meds don’t work this time, I will be looking into this next. M x

[medway-lady]

Are you talking about Hiprex ? if so yes and its very good and since starting it in January I've had no UTI's but it tastes vile and so I cut in half and it needs a full glass of water. I got Ecoli from a Hot Tub on a cruise ship so never again. And had 9 lots of antibiotics which damped down the bug but never got rid of it. Hiprex changes the acidity of urine and so the bug can't thrive and for me it works well. No side effects either except the taste.

[marie66 in reply to medway-lady]

Yes Hiprex I’m hoping it’ll work. I’ve not been able to clear the EColi out my system since October despite trying different antibiotics.

Can I ask is this an ongoing treatment? Nobody has really said. M x

[medway-lady in reply to marie66]

Not sure I've been on it for 8 months and Urology appointment is next month. I was told back then it was a trial and a new way of treating people who get these problems. So I'll be told next month lol I hope so as its so nice to be free of bugs. I'd volunteer to stay on it.

[marie66 in reply to medway-lady]

Hi MLady, are you still on Hiprex? I’m still waiting to be seen by Urology so now been on Hiprex for 5 months.

No sign of clinic appointment yet so I think I could be on Hiprex for some time yet. M x

[medway-lady in reply to marie66]

Yes and my next appointment is on Thursday and I'm hoping to stay on it. It does seem to work so far. Better by far than so many antibiotics and the risks that involves of being less effective. Things are taking so long these days and it is still working for you ?

[marie66]

Thanks for replying. It seems to be working ok for me too and the move from antibiotics to Hiprex has allowed me to go back only my methotrexate. I’m still working slowly back up the doses, currently at 12.5 so I’m getting there! Good to hear your ok on it too. ((hugs)) M x