Kidneys: The past few year i have been suffering... - LUPUS UK

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Kidneys

Deehealth profile image
8 Replies

The past few year i have been suffering with what it seemed recurring uti's. The doctors have checked my wee samples and have always mentioned protein but did nothing about it, when they have sent it off it has came back no infection but still put me on antibiotics. I had a kidney scan two year ago and recently my kidneys have been painful, never usually hurt so i mentioned to my doctor and she replied 'well they were fine two year ago they will be fine now' i just need answers i am only a 19 year old girl and this affects me deeply, i cant go out as there isnt a nearby toilet i could rush to if in an emergency, could anyone help???

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Deehealth profile image
Deehealth
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Deehealth profile image
Deehealth

Also my auntie suffers with lupus and i have been tested for it but lupus cant be diagnosed like that, so i have to write everything and hopefully the doctor can diagnose me soon, i have all of the symptoms except for the butterfly rash and thats the only thing i think the recurring uti's come from

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Deehealth

Hi Deehealth, what tests have you had for lupus? Were these done by your GP or have you been referred? Generally lupus patients would have their urine routinely checked to look for any signs of kidney damage. If you suspect you have lupus then you need a referral to a rheumatologist. They will be much more experienced in diagnosing and treating autoimmune conditions.

Footygirl profile image
Footygirl

Hi Deehealth. Sorry to hear of your repeated infections. That is miserable. I suffered for 3 years with it and the male doctors were sympathetic to a point but when I saw a female Dr she sent me for kidney scans, a look at my bladder from the inside, and urine tests and referred me to a Urologist! Bless that woman. I was put on an antibiotic a day and have not looked back. Apart from the bladder inflamation I was ok. I take a Nitrofuatoin at night and have not had a bladder infection since.

I really feel for you. Once felt never forgotten. Your doctor should give you a proper answer about your kidneys and recurring infection. Is there another doctor you can ask? When any condition impinges on your day to day life, as you say, something should be looked into.

I hope you can find a more sympathetic doc who will listen to your problems.

I am thinking of you, Deehealth.

Barnclown profile image
Barnclown in reply to Footygirl

Hi there footygirl:

Am v interested in the treatment you're on, and will be vvvv grateful for a few more details:

which daily antibiotic & at what strength?

What lupus meds are you on?

Are you being treated in the UK?

I've been dealing with persistent recurring UTIs + now kidney infection all my adult life with my gp's help. Am 61 now (my lupus is infant onset). Rheumatology has had me referred to urology & now immunology....long story, but yes: always do all the right lifestyle stuff etc.

Urology is being hugely cautious because my Sjogrens is highly active & I have hypogammaglobulinaemia ...they've done the renal & urinary tract scan (all fine) but are hesitating to do endoscopic internal bladder etc exam because they fear setting off another persistent infection. They're conferring with my GYN & gp, + considering the lab results of the UTI/kidney infection that started up earlier this week. The head of urology told me that treatment with hiprex (aka: hexamethylenetramine, hexaminemethylenetetramine, methenamine, aminoform) may be appropriate

Several years ago I became resistant to standard antibiotics for this, so gp lets me keep a 7 day course of the antibiotic cefalexine500mg at home, which I start taking when a home sample urinalysis reagent strip test is positive (with me, results are always at least pos for Leu, pro, blood). Before I start cefalexine, I collect a special sample for lab analysis (using a special red lidded sample pot with boric acid preservative, for bacteriological use only) and drop it into the surgery so urology can monitor which bacteria are involved. Rheumatology have instructed that so long as significant fever isn't persistently part of one of my UTI/kidney infections, I can continue daily 1000mg myco cellcept and I should extend the course of 500mg cefalexine 4x daily to 3 weeks as a prophylactic measure

Hmmm

Footygirl profile image
Footygirl in reply to Barnclown

Sorry

I am on Plaquanil 100 once a day and aazathioprine (went up to 75mg last summer from 50 when LFTs went off)

bluebell99 profile image
bluebell99

Please go back to your GP and impress strongly how much this is affecting your life. If you get given the brush off see another doctor in the practice or change surgeries. This is not normal and a test from two years ago is no indication of what you are suffering from today.

I assume you are doing all the right things to help, drinking plenty of water, cotton lined pants, no shower cream, soap, wipes or scented bath products, emptying your bladder before and after sex, avoiding tight fighting jeans or trousers. If you are doing all of these things to no avail, again tell the doctor, who should get the message that you have tried to help yourself and now you need a proper diagnosis, at the very least another ultrasound or referral to a urologist.

If you are suffering the odd slight leak then doing pelvic floor muscles will help, as will stopping and starting going to wee a couple of times when you are urinating.

At your age you should be able to go out without fear of accidents. It is not normal, so don't be fobbed off . It may help if you take a relative with you who can confirm and emphasise your difficulties.

Good luck!!,

Deehealth profile image
Deehealth in reply to bluebell99

The symptoms are worsening now, getting pain in my wrists and fingers, the doctors arent listening what so ever

misty14 profile image
misty14

Hi Deehealth

So sorry you are having horrible problems. I had recurrent wee infections , all the symptoms but like you tests coming back no infection. I was referred to Urology, had a camera test and was diagnosed with Interstitial Cystitis. Put on different treatment and transformed!. Unlike you I didn't have protein in my wee so you need to push to see a Consultant like the other correspondents have said!. Good luck. X

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