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....
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thanks daisy! i hadn't even thought of trying for a cancellation....exactly what i should do!
This could be a lot worse. I'm sort of ok with long term high dose antibiotics, cause got the hang of that during 5 months on daily high dose flucloxacillin for osteomyelitis jawbone infection in 2011-12. Fortunately cefalexine is a bit less revolting than flucloxacillin is. My version of lupus has always lifelong predisposed me to infections so I've been forced to have a lot of antibiotics...and do the usual lifestyle stuff to counteract that (probiotics etc)
So sorry to read what a tough time your having with these kidney and bladder infections. Must make you feel very poorly!.
First thought I don't think you will have to wait long for Urology with your history. Good idea to try for a cancellation.
Secondly, when you do a strip test does it show you have an infection?.
Sometimes it's impossible to know if it's an infection or flare as the symptoms can be the same and I'm just wondering if it's your body's way of complaining about the shadow found on your Dexa Scan that could be a stone!. Auto immune illnesses can do funny things!. Really feeling for you and hope you get that appt soon, I would have thought your GP would have asked for it quickly!. X
You're so with it, misty! Am vvv grateful for your comments
Yes, during my worst series of acute UTI infections in 2012, my gp had me keep a fresh urinalysis reagent strip test kit at home with a spare course of cefalexine. The infections used to come on so super quickly and so dreadfully severely that we agreed I had to be able to sort myself out at home pronto. But the protocol agreed between me, my gp & my rheumatologist is that I keep a record of my strip test results & bring a fresh urine sample to the out of hours gp service or to the surgery asap each time I start a new course of cefalexine. Now I also photograph (!) the urinalysis reagent strips showing my test results next to the kit diagnosis table, and keep prints as a record of results. Meanwhile my gp does strip tests on the samples I bring her & sends them off for lab tests too. So far my home test results always agree with the surgery & lab results. So I'm not self diagnosing, and corroboration of test results happens appropriately.
Yes, I'm told these are at least in the greater part kidney infections, with minimal urinary tract involvement. My GP, the out of hours gp service & rheumatology all say my symptoms & the tests' results confirm kidney infection. And she thinks the underlying cause/source could be kidney stones combined with my predisposition to infection (lifelong my WBC & lymphocyte results are always just below or just at the vvvvv lowest end of normal). As I understand it, the probability of kidney stones is why I'm being sent for imaging (scans) before I even see urology. Interestingly, yes, during my recent dexa bone density scan, the tech asked me what the stuff she was seeing in my left loin could be....my gp suspects these are kidney stones.
And yes, I do suspect there is an element of lupus flare in all this, because during these weeks of infection I'm having persistent flu-y feelings which get worse in the little gaps between cefalexine courses when we're waiting to retest & discover the infection has started up again. Last weekend, for instance, I stopped cefalexine at gp's instructions with 5 caps left in the course because I'd tested clear of infection. But within 12 hours of my last cefalexine cap, my leukocytes result was 125++ with protein pos as well, and the flu-y feelings increased. But I had my monthly myco bloods tests last week, which resulted my kind of 'ok' across the board....so I guess my bloods aren't showing lupus? But, in my humble opinion, that doesn't mean something lupus-y isn't happening
I do feel rather in at the deep end, having to understand all this. And comments like yours help me a lot to feel more confident + to decide what ?s to ask my drs
Thank you for such a good, detailed reply. I'm struck by what a responsible patient you are over these infections and relieved how closely your working with your GP with them. The reason I was asking was there is a bladder condition called Interstitial Cystitis that I have that mimics symptoms of infection despite testing always coming back normal!. One thing you don't have to worry about!.
Good luck for when you have your scan. When is it?. Another thought I've had is you could ring the Urology Dept and check the referral letter is with them and ask how Long and explain your need. It shouldn't be long as your getting permanent infections!. Your GP could also chase it if you don't hear. Hope you hear soon.x
Gosh: for some time I've been wondering what interstitial cystitis is...it's mentioned every now & then here. It must be complicated to deal with...am sorry you have that to cope with....I'll google it now.
I haven't heard anything yet re dates for scan & urology. Your advice on this is vvvv helpful: starting by asking if they have the letter of referral yet IS a good idea!!!!
It may have been a coincidence but i was suffering badly with ongoing uti infections a few months back. They all seemed to get better when i did 2 things.
I started taking vit d3 at high strength. Said to help combat infections.
I rubbed essential oils of sandalwood and frankincense on my abdomen
Thanks v much overnight - I thought I replied to you earlier today....but must've not submitted...was off to an appt, probably rushing
Am glad you're free of infections now...long may this last...my gp is confident we'll get me free too....but I find it hard to forget that older women (eg in res homes) can end up on daily antibiotics long term to prevent persistent UTI & kidney infections....but I try to think positive!
Yes, I will look for sandalwood & frankincense essential oils: sounds Lovely! I have been rubbing weleda arnica oil on my loins which is v soothing
I've been taking daily high dose Vit D & Omegas for years now...I like to think this helped keep me free of UTIs after that bad series of infections in 2012....
Hello again overnight: went to Holland & barrett's this morning: now have the frankincense essential oil: the staff said to mix it with baby oil. Will give it a go today!
Hi cancellation as soon as you know where and who you are going to see, which hopefully will be soon, phone the consultants secretary. Could you be considered for an earlier appointment if some ones cancelled there's, second thoughts maybe better to phone the clinic worth a try
Hi Barnclown. It's been a while since we were last in touch but I'm with the others on this one. Kidneys are precious. Do whatever you have to in order to get seen - don't worry about being a pest. The only one who really has your best interests at heart is you.
Lets hope you can sort these kidney infections out quickly. I have only ever had one that was truly in the kidney and I was sooo ill. Raging fever and in too much pain for anyone to even touch me. Best wishes and keep us posted. Clare xx
Thanks so much Clare!!! Yes, am well aware that so far the worst possible sensations of this kind of problem aren't hitting me full-on. Am vvv much hoping to avoid that nightmare stuff. my gp & rheumatologist are saying my daily myco is probably damping down fever & flu-y symptoms somewhat but today I'm noticing them more. Your reply & the others' have helped me HUGELY. I'm going to get going contacting urology later this week - my gp's referral only went out last week, so will give the post a few days more. Am so glad of your encouragement & warnings. and v sorry you had to go through that horrendous kidney experience....if things get worse for me, I'll be channeling your courage. Take care xo
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