Urology

[jacqueline121]

Hi everyone, I have an appointment in a couple of weeks with a urologist because for the past two years I keep getting re-occurring urinary tract infections. Most of the time the infection is back within a few days of stopping the antibiotics. Also there is often protein or blood or both when I'm tested. My rheumatologist decided it was time I seen a urologist to try and find out what's happening. 

I wonder if anyone else has had this problem, or any idea what it is? I up for the toilet 3 or 4 times a night usually. I feel I've constantly got inflammation flare ups, and feeling I have vasculitis, which I've tried mentioning, but it was just written don and so far no investigation. 

I'm kind of tired going to doctors and try to sort things out myself when I can, but these 2 problems I've not been able to improve at all. 

Any help would be appreciated. 

Thanks 

[Barnclown]

Hello Jacqueline.  I'm so glad rheumatology is taking the bull by the horns & referring you for investigations. 🌟👏👏👏👏. Last year I learned how important & precious these urology referrals can be.  Here is my story...trying to be brief...but, knowing me, that's unlikely:

My infant onset lupus is of the Vasculitis type and it went without systemic treatment except for emergencies until 5-6 years ago.  Meanwhile the NHS diagnosed & treated my host of secondaries relatively effectively.  One secondary has been what I now know in dr-speak is called: chronic complex persistent pattern UTIs + pyelonephritis + interstitial cystitis + urethral syndrome (aka abacterial cystitis).  My version of all that started to become severe in my early 20s, with infections gradually becoming more frequent as the years passed.  Symptoms typically came on extremely rapidly, with multisystem reaction (fever, vomitting, diarrhoea, urine samples containing blood, tissue, pus, protein).  I concentrated on conscientious lifestyle management techniques & PREVENTION...while my gps managed these infections for 40 years...telling me it was normal....but when my lupus was finally rediagnosed 5-6 years ago, I found out this pattern is far from normal.

In Autumn 2014 I began what turned out to be a 5 month run of persistent (ie instantly recurring) UTIs + what I now know is pyelonephritis.  By then i'd begun to keep urinalysis strip test kits at home with my gp's emergency stock of cefalexine (years earlier I'd become resistant to trimethoprin & amoxycillin).  Also, by then, I'd wised up, thanks to lupus uk & this forum, and begun to realise I should've been referred to urology years ago.  So, I told my GP it was time for referral.  My first urology appt was with the dept chris surgeon.  He was totally horrified that I hadn't been referred years ago and asked for my lab results re previous infections, saying the first thing they needed was to ID the bacteria involved.  I told him my GP had barely sent 1 sample to the lab and I'd never been informed of results.  He gasped.  And he sent a formal request to my GP for any lab results to be sent to his dept.  Meanwhile, he told me he'd hand me over to his female colleague because I'm such a 'complex patient' + he'd ask her to consult with my gyn before seeing me (I'm a DES daughter with typical birth defects in there, having annual monitoring).  Meanwhile he gave me a red-lidded lab sample pot & lab form, telling me to make sure an MSU goes off at the next infection recurrence 

While I was waiting to see the lady urology surgeon, the infection continued to recur and I was able to send off several MSUs to the lab.  By the time I saw her, she knew the bacteria involved.  At that first appt she said rigid cystoscopy with biopsy with GA staying as inpatient overnight was necessary due to the blood, tissue etc in my samples and my immune dysfunction (by then immunology had established I also have an early onset immunodeficiency).  And she gave me that dr-speak provsional diagnosis of complex persistent pattern etc etc.  She is lovely.  The cystoscopy went smoothly & no cancer etc was found.  She put me on 100mg nitrofurantoin as a prophylactic and agree with immunology's prescription of higher dose + longer course more powerful antibiotic treatment (coamoxiclav 625mg for 2 weeks).  last summer during the cystoscopy they gave me IV gentamicin which  TOTALLY cleared up any lingering urological infections and also the urethral syndrome(abacterial cystitis) symptoms.  So now we know there is more to my UTIs than my gps ever flippin dreamed (I try not to dwell on their protracted negligence...years & years of it.  I tend to think I was a ninny not to have insisted on referral to urology many years ago...but that's water under the bridge)

Since the cystoscopy, I've used the nitrofurantoin at least 1x per week, and have only had 1 UTI+pyelonephritis which coamoxiclav cleared up promptly (coincidently, the coamoxiclav also greatly damped down my chronic sinusitis: 🤔😏).  I've continued to see my urologist every 3 months.  She is now part of the Pelvic Mixed Disciplinary Team helping me with a complex abdominal/pelvic flare that began last October.  In fact, she arranged the PMDT referral.  I think she is a 🌟.

Rheumatology, immunology & urology are now all singing off the same hymn sheet: my version of these infections is mainly down to Vasculitic-type SLE + sjogrens + Vasculitic-type EDH (ehlers danlos hypermobility) + PID (primary immunodeficiency).  I'm keeping urinalysis kits & emergency antibiotics & MSU pots + lab forms at home.  The show rumbles on.  Since my referral to urology, I've met others on here who have much more complex and serious urological conditions than mine...so I feel quite lucky.  And very very glad of my referral to urology + that the male chief was insightful enough to pass me on to his wonderful female colleague.  Meanwhile I continue to conscientiously use lifestyle techniques to prevent incidents of infection as best I can

Sorry for going on at such length, but you can see this subject is close to my heart. I hope something in this testimonial helps you &/or others...and I hope you'll let us know how you get on

🍀🍀🍀🍀 coco

PS what lupus meds are you on?  My version of Vasculitic-type SLE et al is responding quite well to this combined therapy treatment plan: daily hydroxy + myco + pred + amitrip.  As I understand it, this combo is fairly effective for patients like us

[jacqueline121 in reply to Barnclown]

Thanks very much for replying. You have definitely been through it....all those years without doctors sorting things out is incredible.  I'm glad at last you seen a urologist. 

Yes I get fevers sas well and don't feel well most of the time. I'm struggling trying to do a degree as well which makes it all the more difficult. 

I also have Sjogrens and auto immune hepatitis and I have a kidney problem called renal tubular acidosis which I believe was caused by the Sjogrens. But to get the UTI's and vasculitis sorted out would make a huge difference to the quality of my life. 

The strange thing is neither of these two problems seem to be improved at all by steroids or immune suppressant drugs. I thought at least the vasculitis symptom would be helped. 

At the moment I'm on 10mg prednisolone and 3mg of prograf (tacrolimus)  this is my third immune suppressant as the other two stopped working. 

I am looking forward to seeing the urologist and to see what they have to say and looking forward to any help they offer. Just to have a decent nights sleep would be nice. 

I'm going to read through your post again as it was really interesting  thanks again and I hope things stay under control for you. All the best X 

[Barnclown in reply to jacqueline121]

You're vvvv welcome.  And I like the way you're thinking.  You're clearly another complex patient...it's so important you are able to outline your condition & treatment as clearly & concisely as you have in this reply to my great long thing.  I feel certain a skilled urology consultant will contribute a lot to a better understanding of what's going on with you 'multisystem'.  If there is anything more I might help with: please do let me know. 🍀😘

[jacqueline121]

Thanks very much 

[leannehowis]

Snap! ! The doctors just give me a prescription for antibiotics now although I had blood in my urine 3 weeks ago and saw a different doctor who referred me for testing so had a cytoscopey last week and all was good as a follow up I'm having a ct scan today x when I told rheumatologist last time he said it was probably nothing but took a sample and some bloods that was 3 months ago and I've not heard anything so I assume they were ok. Good luck and keep us updated on your progress x

[yakamalayo]

Hi. Not sure if this will help but my daughter (who has Lupus) also has a tendancy to get UTIs, as do I.  After her last horrible bout I did a bit of extra internet research and came accross D-Mannose powder (see link waterfall-d-mannose.com/).

She had just got some anti-bs but tried this before starting them and it completely did the job so she didn't have to take them - hooray! It seems miraculous although also pretty expensive which is a shame, but worth it if it works. I've got some in case I get cystitis although I've found other ways of reducing the risk over the years so haven't had it for some months, so I haven't actually tried it yet.  Anyway, worth a look.

[jacqueline121]

Thanks very much, I have just checked it out on Amazon. I will give it a try. If it works it will be well worth the money, 

All the best 

[Paul_Howard Partner LUPUS UK in reply to jacqueline121]

Hi jacqueline121, we would encourage you to discuss this alternative treatment with your consultant before trying it. Everybody with lupus is different and what benefits one person can be potentially harmful for others. In high doses D-Mannose could harm the kidneys and if can also make blood sugar control difficult for those who have diabetes. 

webmd.com/vitamins-suppleme...

[jacqueline121]

Ok thanks Paul, I've decided to wait until I see the urologist so he/she has a clear view of what's going on. I will mention it to the urologist and see what they have to say. 

Kind regards

Jacqueline