Some background (apologies in advance for my being long-winded):
i have a history of rapid onset UTIs with severe multisystem symptoms. They've tended to occur in clusters, over the decades. I soon became resistant to amoxycillin & noroflaxin, but cefalexin 500mg continued to help, so my gp gives me a course to keep at home in preparation, along with a urine strip test kit. Early on I learned to stick passionately to all the lifestyle management techniques etc inc OTC supplements like cranberry extract caps daily. I have infant onset SLE + typical diagnosed secondary conditions The sle went without systemic treatment until 4 years ago.
After starting daily hydroxy, I had a run of 4 UTIs, but gyn Physio treatments & training helped stop that run. I added myco to my daily meds in jan 2014 and have been feeling better than since the 1970s when I was in my 20s. Then, last nov, a run of UTIs + kidney infection started up. These are the first infections I've been told involve my kidneys. Of course, the symptoms have been suppressed due to daily myco, but I've adapted to this with the help of my gp & rheumatology, and am now adept at recognising infection onset, and getting on with strip testing + commencing cefalexine courses. rheumatology says not to stop myco unless the symptoms turn as severe as they were before I started myco. My monthly myco bloods indicate kidney function is normal. But the infections flare within hours of finishing each 7 day course of cefalexine (i do not appear to be resistant).
Rheumatology & my surgery have got me referred for nhs kidney scans, which I hear can mean a 4 week wait. I'm also referred to nhs urology to ID the source/cause/nature of these infections. Who knows, but I'm guessing the first urology appt could take several months to arrive.
I've searched on forum and read previous posts on kidney infections, but none quite cover my version of this.
So, I'm curious what you think: is it acceptable for a lupus patient of 61 on my meds with persistent kidney infection to simply continue such high dose daily antibiotics for months waiting on urology? I'm wondering if I need to apply for more urgent appt? Of course, the scan may help speed things up...so I am trying to be patient, but this is hard going...although I am able to mainly be "functional" (haha: eg get basic household chores done, do grocery shopping & get to clinics etc)
Thanks in advance for all help given....