I was wondering if anyone has had any experience of getting pyelonephritis?
I became ill on Sunday with a temperature of 40 with shakes and hallucinations. I had pain throughout my whole body, the pain was worst in my kidney area and head. I couldn't get to see a gp until Tuesday and she sent me straight to my local hospital. I have been treat for pyelonephritis. They tested my unine and found protien and blood. So I had IV antibiotics. I came home yesterday with 4 days oral antibiotics. I feel like I have been hit by a truck. I am better than I was but still feel very weak which is to be expected.
Is this a common infection to get with SLE?
Also this is the first time I have been admitted to hospital with SLE related problems and my care was abysmal. No one had a clue about SLE when I asked for the doctor to get in touch with my consultant (from a different hospital) she refused saying they had it in hand. I am worried sick incase I get sent there again in the future.
I am also wondering if this means my SLE is getting worse or its just one of those things.
Any advice would be most welcome.
Thanks Vic x
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Vicci
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You have my sympathy, it's awful and desperately painful.
I had pyelonephritis a few years ago. It appeared from nowhere, I was out shopping when the fever struck and had to race home before I collapsed. Initially misdiagnosed as pleurisy, I didn't get the right antibiotics for a few days and was really very ill. The pain was indescribable, so bad that I couldn't bear to be touched anywhere on my torso and severe pain ran down both legs so badly that I couldn't sit, bend over or even walk.
I hope it is some consolation to you that it has never happened again. I don't even get UTI's or cystitis. It is easy to be sure of getting the right antibiotics thanks to sensitivity tests from urine.
It strikes so suddenly and so aggressively that it is a shock to the system and it will take a week or two to pick up. I really hope you are back to normal very soon. Best wishes, Clare
I'm 61 now but have just been told I've been coping with pyelonephritis attacks since my mid 20s...and my drs never explained that these horrific attacks were anything more than UTIs. You're spot on: feels like being hit by a truck!!!! I Also used to say it was like being hit by an express train!!!
my feeling is that you have done vvvvv well to cope with this and get diagnosis + treatment via your gp & hospital so promptly
am so vvvv grateful to you for posting this question...am learning a lot from your ? and these replies from clare & bluebell!
The onsets of my attacks were so extremely fast and violent that somehow we always got me to a gp or emergency locums gps wihtin a few hours of initial symptoms...quickly enough to get high dose antibiotics into me orally quickly enough to mean I never ended up in A&E...so, my local surgery handled this & i never got proper diagnosis......but now I understand this was a minor miracle...the other bad thing was that my infant onset SLE diagnosis had been lost, so even when I did end up at A&E for other lupus-related emergencies drs just treated me like any other patient. Well, here I am...somehow I got through all that...
And just over 4 years ago a v lupus experienced rheumatologist finally spotted that SLE was underlying all my typical diagnosed multi system conditions. In those 4+ years, I've become a regular at approx 8 different nhs clinics and put together a 'live' computerised 3 sheet document listing all my diagnoses (& the hospitals, drs involved & dates), all my meds, all the procedures I've had, all the meds I've reacted to badly, and describing all the treatment plans & lifestyle management I'm on. I keep this with me at all times & my husband & sister have copies...so in emergency I can whip this doc out: so far no nhs medical person has dared scoff at this doc & it has proven key to gaining their respect & attention
Back to pyelonephritis: so, over the past 4 years of sorting out my version of lupus & its secondary conditiins, I've been dealing with each nhs speciality one by one, starting with the depts my gp & rheumatologist felt the most urgent. Finally this year we got round to referring me to urology...at first I saw the male head urologist, who seemed so aghast that he barely examined me & instead said he would discuss me with his colleagues. He arranged for me to see his v accomplished female surgeon consultant urologist...the appt was 2 weeks ago...and it has changed my life
The female urologist thinks i should obviously have been referred to urology years ago. As usual, mine is a long tale, but i actually think i presented quite clearly & concisely (for once). she says & writes that all these decades i have been having 'persistence pattern complex urinary tract infections with what sounds like pyelonephritis', which i guess is just the working clinical diagnosis with which she is commencing investigation of my case. she made a big point of checking my lifestyle management routines, and then congratulated me on how i've been doing this...and, although my most recent renal ultrasound several months ago was 'normal', she is so concerned at the frequency with which substantial amounts of blood, pus & tissue have been identified by urinalysis strips in my urine samples over the decades that she immediately decided on cytoscopy and urethral dilation under general aneasthetic - she explained i'm too complex and reactive to have this done with only sedation. she has warned me to expect quite a lot of blood during recovery. hmmm....her colleague the male head of urology had told me he thought cytoscopy would be avoided in my case, because i am highly vulnerable etc (at that point I hadn't actually heard of cytoscopy)...but, from my experience of other clinics moving straight on to endoscopic procedures, i was pretty sure that, regardless of my vulnerability, i'd end up having cytoscopy (mainly due to generally being at what I'm told is significant risk of cancers, i've regularly had cameras & biopsies up all my other 'holes'...my urinary tract is the only hole that has escaped this sort of 'spelunking' so far...). Meanwhile, she has adjusted the protocol with which my gp & I have been handling these infections, the lab samples, and also the meds I've been taking for this
So, after that consultation, i had the first of 2 pre op assessments...and am now waiting to get a date for the second assessment - i was told that we'll set the date of the op at this second assessment. my consultant says she'll give me IV antibiotics as part of the 'op' (yes, she actually calls this an operation, not a procedure...when I asked why, she said because i'm this so-called complex & reactive patient etc: great!).
I try not to think back over all the horrific experiences I've had with this stuff...and I'm concentrating instead on being thrilled to have landed with such an attentive lady urologist
I wish similar good luck to you...my feeling is that it is wonderful they've recognised the seriousness of your condition...cause you're on the right track now...and hopefully the prompt action you're getting will help you avoid the complications I'm now being investigated for....i just suggest that, if you haven't already, you think about putting together a 'live' document like mine which you can share with your closest supporters, drs, & any emergency medical people you have to explain yourself to
Sorry for posting such a lonnnnnggg reply, but this subject is a big deal for me
Is over two years old but I was wondering if you would mind if I could ask you some questions about your urology procedure please?
I am awaiting my urethral dilatation and cystoscopy procedure in January and I'd Really appreciate being able to ask some questions about the whole thing - ideally someone who has had the procedure done.
Sure: please do message. I'm kind of amazed by the long reply I posted to vicci, above...but at least that gives you a pretty good idea of my version of this. It turned out my surgeon told me she didn't need to perform an actual dilation...but, hey, just inserting the rigid scope has to have some dilating effect!
Wow! I'd never heard of this problem before, barnclown, you put it so well to understand. If I'm unfortunate enough to get this at least I'll know where to get docs to check! It probably explains why I have to have regular urine tests along with bloods done. I just get attacks of pancreatitis every few years.
I hope vic you're feeling better and it doesn't happen again.
Thanks chris: your response is the best sort of meds! You've boosted my spirits...I'm hunkering down to get through this stage of the investigations into my urological/kidney stuff and your kind words will be on my mind, giving me courage
Am wishing you every best wish with your stuff too. XO
Hi, yes I had Pyelonephritis in my kidney transplant in November 2011, I was very poorly and rushed into hospital delirious with a fever and awful pain. I was stupid, I hadn't been drinking enough fluids, my kidney function deteriorated, I could've lost my precious transplant! I was in the kidney unit for a week. Luckily over a few weeks my function picked up again and I got back to normal. It was nothing to do with my Lupus at all for my episode. Hope you feel better soon.
Thank you to everyone who has left a reply. I have been recovering so it's taken a little while to get back to you all. Hi Clare, I am sorry to hear that you have also had pyelonephritis, your right it is awful pain. I am pleased to hear you haven't had it again. Thanks for your kind wishes
Hi Bluebell99, sorry to hear you have had this twice. Do you worry it will come back again? Do you have any kidney involvement with your SLE? Thanks for your reply
Hi Barnclown, wow you don't need to apologise for the long post, I found your advice excellent and I really appreciate your guidance. I never would have thought about doing a document but it makes so much sense too do one. Thank you so much for the idea. It sounds like you have had a long and rocky road. Your new Urologist sounds very good, I had a cytoscopy about 3 years ago (before I got diagnosed with SLE) it wasn't to bad for me, hopefully it won't be to bad for you either. I also had recurring UTIs over a lot of years. I have started to get them again though so maybe a cytoscopy only last so long, it might be worth asking your Urologist about this? I would be interested to know what the answer to that is if you could be kind enough to let me know I would very much appreciate it. Good luck with it all xx
Thank you Chris21 best wishes to you too 😀
Hi MandaM, sounds like there has been a fair few of us that has got pyelonephritis. It sounds like your experience has been different from mine with your kidney transplant and lack of fluid, it must have been very scary for you after all you had went through already. The consultant said it was because of my SLE and being so susceptible to infection that I got pyelonephritis but who knows. I am seeing my rheumatologist in two weeks so I should get more answers. Thank you for your reply. Best wishes Vic
Just saw this reply from you vic...had missed it back then....strange to look back in time 2 years this way! Hope things are going as ok as poss for you 🍀🍀🍀🍀coco
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