hi for over a month now ive been feeling really unwell (tried slight headache) i was told i had a uti and give 7 day course of Trimethoprim , i still feel lousy i am going back to the gp on monday is there any tests i should be asking for , i had the same think about a year ago, my urine is always yellow and sometimes bubbley with a strong smell some times , sort of cramps in my stomach like period pain that comes and goes , thanks in advance
uti kidneys: hi for over a month now ive been... - LUPUS UK
uti kidneys
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jazzanne
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Sounds like you need a different antibiotic or need to take them for longer. Sometimes if the infection has been there for sometime it takes longer to kill it off. Such a horrible feeling having infections all the time. Makes you feel so unwell .
Will see what the gp says on monday thanks for your reply x
I've replied on the other thread - this has come up twice. This is what I said:
"A week of trimethoprim? No wonder you feel rubbish! Three days is more than enough for me!
You need a urine culture sent off - preferably when it is strong-smelling but immediately anyway. Trimethoprim doesn't work for all UTIs - especially if it is gut bacteria that have got into the urinary tract. A culture will really identify if it is a UTI and which antibiotic is the right one. If you have the symptoms and no identifiable bug - they need to look a bit further."
Be firm with your GP - you need an early morning, mid-stream sample in a sterile container.
how does gut bacteria get into the urinary tract?
They always used to tell little girls to be careful to "wipe from front to back" when they went to the toilet. Even so, there are always a few bacteria from faeces around that area - part of our rather badly designed anatomy I'm afraid.
It doesn't need many bacteria to get to the urethra (the tube that takes your urine from the bladder to the outside) and then they settle down in a nice warm moist environment and multiply. Eventually they are enough to cause a UTI. They can move upwards to the bladder and kidneys even as well as down in the urine.
Hi the gp is going to sent the sample off today, i was feeling abit better yesterday , but feel it working on me again today she gave me nitrofurantoin for 3 days and i felt abit worse after taking it, in the past my samples have always shown no infection which i cant understand?
Hi the gp is going to sent the sample off today, i was feeling abit better yesterday , but feel it working on me again today she gave me nitrofurantoin for 3 days and i felt abit worse after taking it, in the past my samples have always shown no infection which i cant understand?
I must warn you this is long but informative. I have cero negative Lupus, where the test are negative but all the symptoms are positive. I suffered with what I thought were UTIs for 30 yrs. I often didn't have burning when I went, but immediately after there would be a pain right above the pubic area but inside, in a line going up towards my stomach. My stomach would swell and within hours I'd be urinating blood. I'd also have to bare down. I'd go to the Dr. or hosp., they would dip test my urine, see blood and give me Cipro which I am told is the best drug for a UTI. As I was going through the change the episodes came more frequently. Finally a new Dr. sent a culture while I was having a flair up. My urine clearly had blood in it. It came back "neg". My Dr sent me to a euro gynecologist (Who knew?) for further testing. He tested me for IC (interstitial cystitis) and bingo,30 yrs of misdiagnosis and unnecessary suffering, I finally had an answer. The test consisted of inserting a cath , he would then put one of two solutions into my bladder until it was full. He then would remove the solution and put the second one in the same way. Neither him nor I knew which was sterile water or which one was saline solution. Only the nurse knew. If I had a reaction(burning) to the saline then it was IC. Of course he ruled out other conditions prior to this test. I thought it was a fairly painless test. IC mimics a UTI. I was told its like the lining of your bladder gets holes in it and the urine seeps through burning your skin, feeling like a UTI. There is a medicine( Elmeron) sp? you can take,or you can get treated with a heparin cocktail by a cath for a series of 6 weeks 3xs a week( I opted for that and went from 2 episodes a month to not having any for 18 months) or you can try watching your diet. NO acidic foods, ketchup,tomato sauce,citric fruits, juices, even some high acidic coffees can cause a flair up. Go online to read about it. I was told it's not curable but treatable. The heparin makes the holes angry so to speak and causes sort of a scar tissue to form over the holes, stopping the urine from seeping through. Eventually the holes will become exposed again and you will again have symptoms. Then it's time to give the lady another cocktail to calm her down.lol I'm sorry this was so long but there are so many women, and men walking around with this being misdiagnosed. I wanted to make the condition know. Not saying this is what you have but it sure sounds like it. Oh, and it is hereditary and I'm told us Lupus people are susceptible. I pray this has helped someone.
I think that there is a new antibiotic that is recommended for uti's I kept getting them and saw a different doctor one time and he said there was a new recommendation for the antibiotic and he gave it to me and it worked unlike trimethoprine good luck and make sure you go back to doctors x
thank you x
Hi the gp is going to sent the sample off today, i was feeling abit better yesterday , but feel it working on me again today she gave me nitrofurantoin for 3 days and i felt abit worse after taking it, in the past my samples have always shown no infection which i cant understand?
I've had this before lupus was even considered for me. I think it's about getting sample sent away to be tested and then getting the right antibiotic for the infection BUT they could never find an infection with me. Ended up with a long course of antibiotics and when it had settled down doc gave me prescription so I had antibiotic readily available if it flared again. it seemed to be a phase as I've not had them for over a year.
Than you x
For Polly2cats
Check your prescriprion still viable or check use by date on tablets if you have script or tablets on stand-by Polly. Id hate to think you would have a delay if either was out of date because it has been a year since last use.
Just a tip as most scriprs lapse after 3 months unless special arrangements made and tablets out of date, bad news too.
Best wishes. Glad you have had a break. Utis would try Tinkerbell!
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You've got some VVV good advice. All I can add is:
Be very careful of taking trimethoprin. Check the details on your box. Sometimes it's combined with a sulfate antibiotic...many many lupus patients are reactive to sulfa and we must all try to avoid any exposure (sulfa is even known to give drug-induced lupus):
Trimethoprin combination is used to treat infections such as urinary tract infections, middle ear infections (otitis media), bronchitis, traveler's diarrhea, and shigellosis (bacillary dysentery).
Sulfamethoxazole/Trimethoprim (Oral Route) Description and ...
mayoclinic.org › drg-20071899
My infant onset lupus diagnosis got lost when I moved to the UK @21 and I have coped with what urology describes as: rapid onset severe multisystem symptom pattern chronic complex persistent pattern UTIs+pyelonephritis all my adult life. Gp's handled these nightmare infections until last year when I was finally referred to urology. My gps relied on trimethoprin, which I became resistant to. No lab samples were ever taken. Meanwhile I followed all the usual lifestyle management tips to prevent UTIs. My lupus was finally recognised 5-6 years ago and I'm responding well to treatment. But the utis+ pyelonephritis continued...until finally rheumatology insisted I be referred to urology last year @ 61...and now I take high dose 2 week courses of coamoxiclav 625mg which works great (thanks to recommendations from immunology). I'm also on repeat prescriptions for nitrofurantoin 100mg as a prophylactic against utis (usually 1-2 X per week after sex)
I still conscientiously follow all the lifestyle management tips to prevent UTIs. And keep GP-quality home urinalysis strip test kits & emergency antibiotics. Urology was furious with my gps for what was in effect neglectful treatment. I now give MSU (early morning mid stream urine) samples before starting the home antibiotics, and if the lab test results indicate I need antibiotics other than coamoxiclav, we change what I'm on
🍀🍀🍀🍀 coco
what are the symptoms lf lupus thanks for all the advice
Not sure if you want the symptoms of lupus, or the symptoms if a UTI is related to lupus...but here goes:
This link to the symptoms section of the Lupus UK website gives you a better answer than I can myself:
I'm not aware that UTI symptoms are all that different whether you have lupus or not. But, as I understand it, in my case the severity & rapid onset of my UTI symptoms + the speed with which the infection spreads to my kidneys are all mainly due to my version of infant onset lupus + early onset sjogrens + early onset immunodeficiency
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Hi the gp is going to sent the sample off today, i was feeling abit better yesterday , but feel it working on me again today she gave me nitrofurantoin for 3 days and i felt abit worse after taking it, in the past my samples have always shown no infection which i cant understand?
Samples showing no infection even though you're experiencing infection-like symptoms does happen. There are several reason this happens. It's complicated to explain, but if you google terms like:
Abacterial cystitis
Urethral syndrome
Interstitial cystitis
The info you'll find can help you get your head round this
AND there is another body of perfectly legitimate, serious medical thought that suspects infection can exist undetected even when test results are negative....because testing techniques etc just aren't designed to be 100% perfect/infallible whatever
Thanks for all the info, how long does a urine culture take at the lab x
I've found this varies...could be 24 hrs...or up to 3 days.
meant to ask if there is a infection does it show what tablets you should be taking
Yes: U.K. NHS lab reports state the breakdown of elements found & the bacteria involved & the antibiotics that should be effective
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many thanks i just wondered if taking Trimethoprim a day before the test would give a false result, sorry for all the questionx
Don't worry: no probs!
Your GP should've specified on the lab form the antibiotic you were on @ the time the sample was collected. The lab takes this info into account. Yes, being on antibiotics can affect a lab result, but if meanwhile your infection symptoms do respond positively to the antibiotic, usually Drs will assume you did have an infection
key thing is to:
In future, keep lab sample pots at home - your GP surgery will supply these
Keep lab forms at home (your GP surgery should supply these too: make sure you know how to fill them in correctly - incorrectly completed forms result in no lab work)
Follow MSU guidelines when collecting the sample, here is an NHS CHOICES link:
nhs.uk/chq/Pages/how-should...
Submit the sample immediately to the GP surgery
Then start taking whatever antibiotics your GP has prescribed (if symptoms are severe there is no need to wait for the lab report)
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ive been feeling abit sick with taking nitrofurantoin i just read if you have low b12 you shouldnt be taking it , i have low b12 woud that stop it working x
Not sure, but you're right to be concerned. Best to contact your GP now. Also, I would ask a pharmacist.
The surgery called the lab result was neg, (my lab results are always neg yet dip test says infection) they said stop taking the med , and go back if still symptoms next week. my question is why is dip saving infection and lab test is neg. ? thanks
This is a tricky question. Did your GP do the pos dip test? Was the dip done before you started the antibiotics & then collected the lab sample? Etc. Sorry...these urological symptoms can involve a lot of figuring out...my feeling is you'll do best to get your next lab sample in before you start antibiotics etc
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Yes ask them for a 3 month course. I spent 2 years being given a week at a time. Saw specialist and he gave me a small dose for 3 months not had one since. That was nearly 2 years ago. Good luck. X
Hi jazzanne. You definitely need to go back to your GP and ask for further investigations. My 8 year old daughter has been plagued by UTI infections since January and we have even ended up in A&E one night, as her temp soared to over 40, she had a rash and was vomiting - but we think now she also had an allergic reaction to trimethoprine. When the pain comes she is beside herself and has missed a few days off school. She doesn't have the typical UTI markers, so we've been told, but consistent white blood cells in her urine and pain etc. But no red blood cells and no frequency or urgency issues. We think it's an infection somewhere. She has an ultra sound booked for Thursday afternoon, so that we can find out exactly what is going on inside. It's worrying but at least we'll know what we are dealing with. So, go back to your GP and lay it on thick! Good luck.
Thanks Wendy i hope the ultrasound goes well , would a liver funtion blood test show if the kidneys were working alright x
Thank you for your reply. Blood tests haven't been mentioned yet. I guess they'll see what shows up with the scan. As a mum, with SCLE, I am completely paranoid that it is something more sinister! She seems to be following me with being sensitive and allergies already! Arghhhhh! Make sure you get to your GP ASAP.
No - liver function tests are only for liver function. There are lots of others for kidneys.
Wendy is right - you need to get your GP to look more closely and refer you urgently to urology if it doesn't clear up. As Barnclown says there are other causes of the symptoms and the right one has to be found. Sometimes they just don't find the bug but a GP is just that, a general practitioner and they know a bit about lots of things. A specialist knows a lot about one or two things - and that 's the person to find complicated answers.
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