Recurrent UTIs

[heatherevans28]

So over the past two months I've had four hospital admissions for severe UTIs and kidney infections, as well as countless doctors visits. The third admission was due to sepsis, so it's been an emotional time.

My main symptoms have been fever, vomiting, severe lower flank pain, pain and urgency when passing urine and blood in urine. Each time samples have been sent to the lab for culture and it has often been the same strand of e-coli which is multi resistant. In between admissions urine samples have been clear so it's not obvious why I keep getting new infections. I have been extra strict with toilet hygiene, sexual hygiene and water intake.

We have now tried 8 different courses of antibiotics and the only antibiotics it has shown any sensitivity to are IV. I am currently in hospital and undergoing another lot of IV antibiotics while we wait for the latest culture results.

I've had kidney ultrasounds, an MRI, CT and a cystoscopy. All that has been found so far is some calcification on my kidneys, most likely due to lupus nephritis when I was 21 or the infections themselves. Theres no abscesses or obvious causes for these recurrent infections.

Has anyone got experience of this? If so, what was the next step for you?

For reference I'm 26 and was diagnosed with lupus at 19. I'm on mychophenolate mofetil (1g twice daily) and low dose prednisolone (5.5mg daily) for the treatment of my lupus. We are slowly lowering the MMF dose to reduce infection risk, but that will take time. I am also adrenal insufficient so infections can be very dangerous if untreated, and sick day rules apply.

[Jmiller623]

Hi Heather! Sorry to hear you aren’t feeling well. That sounds miserable. I think coming down/off MMF is the right thing to do. Sounds like they’ve done due diligence as to the cause so maybe it’s just a problem with immunosuppression. Has your medication regimen or dose changed lately? Is your kidney function stable?

One other thought is making sure they check your immunoglobulins and/or neutrophil count. If they are low and options for antibiotics are slim, they could administer IVIG or neupogen if the immune system/white blood cells are low. This may help fight infections that you can’t do right now on MMF. Some urologists also prescribe prophylactic oral antibiotics to prevent recurrent infection after successful treatment in patients that are immunosuppressed.

I hope you find some relief soon. Please keep us up to date. Sending hugs your way. ❤️

[Jhpc]

Hi Heather, you’ve had a lot worse time than me with the UTI’s, I’ve had about 5 the last few months, (ecoli) also told I had an overactive bladder,the last time I had one my temperature was over 40, vomiting and shaking really bad. I had the cystoscopy as I too had blood in the urine. No pain with this.

Been prescribed Hiprex low dose antibiotics for 3 months, topical oestrogen for below, to take D-Mannose and cranberry tablets from the health shop, yakult for the gut, plenty of water and cranberry juice...

Trying to stay off fizzy drinks and limit my wine intake, I’m hoping all this helps.

The above may help you hopefully. Let me know how you get on as it’s such a horrible thing to go through.

From one Heather to another lol. X

[Barbaraanne42]

Yes I’ve had 8 hospital admissions since June, multi drug resistant antibiotic , had the same bugs as you, also sepsis in November last year.

The only drugs I can have are Fosfamycin a sachet you mix up at home, or Meropenham a IV antibiotic.

They don’t know why I’m getting them, I was born at six months with clots in my kidney from my moms APS, had operation to clear the kidney but still get infections.

Also beware of the antibiotic they give you they will flare up your lupus. Like Nitro, Trimethoprim ect

[Barbaraanne42 in reply to Barbaraanne42]

There is a sepsis helpline, you also suffer with post sepsis also.

[Treetop33 in reply to Barbaraanne42]

Does trim cause flares? I thought it was the combo. Asking urgently because I'm taking them currently. Doc says they are ok.

[heatherevans28 in reply to Treetop33]

I've had trimethoprim without any issues so please don't panic. As far as I can find, Bactrim and Septra are antibiotics that contain sulfamethoxazole and trimethoprim. It's the combination of both drugs that has been proven to cause lupus flares. If you have any concerns please speak to your doctor.

[heatherevans28 in reply to Barbaraanne42]

I'm sorry to hear about your past 8 months but thank you for your comment. These infections are truly a nightmare. What does the fosfamycin help with? Meropenham was my treatment for sepsis but we are using different antibiotics with each episode, as it keeps not showing sensitivity.