Recurrent UTIs

Long story short I have recurrent bladder infections because I self cath due to having transverse myelitis (possible onset of Lupus?) When I was 12. My urologist doesn't like to treat them unless symptomatic bc he's afraid of developing resistance to them. My rheumatologist feels since I'm on immune suppressing drugs it may help to be on prophylactic antibiotics. What do I do? I get what each is saying, but given the fact that part if my inflammation could be bc of an infection it may be worth a try.

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  • I had UTI's for 3 years they were almost constant no one took any notice how ill they were making me. In the end I was referred to a specialist and he put me on a low dose antibiotic for 3 months. It was the best thing anyone did for me because touch wood I haven't had one since and it's been a little over a year. The difference to always feeling so ill on top of everything else was amazing. I still make sure if I go away I have antibiotics with me but so far all fine. It worked for me so good luck they are not nice to have. Xx

  • I also have to intermittently self-cath - problems started after a hernia repair in 2011, although there were signs before that. I intermittently have stages of retention when I have to do ISC. The last really bad stage was a few months ago. Had 3 uti's and long term antibiotics were suggested. I think it can be really effective. Unfortunately, it had a big effect on my liver function so had to stop. Waiting to see a neurologist to see if there is a neurological reason.

    Interestingly, my rheumy didn't want me to go on stronger immunosuppressants because he thought it would predispose me to even more infections. Swings and roundabouts!

    Sorry, no concrete answers, but maybe worth ago for a few months?

  • recurrent uti gave me an incurable pelvic pain disease that's completely altered and nearly ruined my life. I beg you to take any measures necessary to prevent them. Seek out a good urologist don't end up like me

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