Uti infection

[jeevan05]

Hi, I keep getting uti infections which are very painful. I have lupus and on a aza..50mg.. I have had it twice this month since my last one I am drinkig at least a litre of water a day. Even the gp said I'm doing everything possible. I'm seeing my rhumy. On Monday the 6/2 shall I mention this problem. Any advice thanks..

[Barnclown]

Hello jeevan...am so sorry you're having these recurrent urinary tract infections: they are nasty to manage, ultra awful to experience and v dangerous for our kidneys & also for our general welfare

I went through decades of my gps claiming my recurring UTIs were "normal"... but, once my infant onset lupus diagnosis was recovered 6 years ago, these infections became even more persistent...this forum helped me to figure out my kidneys were being affected...and this forum gave my the courage to insist my gp refer me to urology.

I saw the chief urologist who was horrified I'd not been referred years earlier...and appalled that over the decades my gp surgery had only sent 1 urine sample for lab analysis. After thorough investigations to rule out bladder cancer, urology's diagnosis was complex persistence pattern urinary tract infections with pyelonephritis due to chronic pockets of bacteria-driven sepsis, with interstitial cystitis/urethral syndrome. I was prescribed a special antibiotics regime, which my Immunology clinic also oversees...I haven't had an infection since! PHEW 😜

Now I know enough to realise we ALL deserve attention from urology when infections start recurring...and that this sort of urological thing relates to typically overlapping conditions in immune dysfunction & connective tissue disorder patients...e.g. in my case am diagnosed with early onset SLE + SS + ehlers danlos + early onset immunodeficiency.

So, yes: do make sure rheumatology documents that you've got these urological problems. And do ask your gp to refer you to urology....meanwhile ask for a lab sample pot to take home so you can submit an MSU for analysis via your gp surgery when the next infection surfaces

Apologies if you know all this already, but:

Here is a link to NHS approved Patient UK info that can help you argue your case for referral (scroll down the page to find the 'indications for referral' section)

patient.info/doctor/urinary...

And here is a link to instructions on collecting a MSU:

nhs.uk/chq/Pages/how-should...

Please let us know how you get on

🍀🍀🍀🍀 coco

[jeevan05 in reply to Barnclown]

Thank so much for all your advice

[PMRpro]

Has the GP done urine cultures every time? If he didn't, he can neither know if it is bacterial (an infection) or, if it is, whether he is using the right antibiotic and clearing the infection completely which is a common reason for having another a few weeks later.

Any patient who has repeated UTIs needs a urology referral to identify WHY they are having repeated episodes because it may not be "just" bugs, there are what are called "mechanical" reasons too. And it is NOT "normal" to have repeated UTIs. Your GP is being lazy.

[Natura in reply to PMRpro]

I agree PmR. I have scarred kidneys. Which I was told by my kidney dr from constant uti's, and that I probably have an infection all the time. He did not prescibe me anything or tell me what to do about it. Other than anti biotics, which i refused. I told him there was no way I was going to stay on anti biotics the rest of my life. I choose to fight bacterial problems with garlic and onions everyday in every meal. Plus cranberry. I have not had a uti in awhile. (Knock on wood). I still have a high wbc, and wonder why? Is this a lupus thing? Because my hematologist noticed the high wbc and high co2 in my blood, and asked how I was doing with the lupus and seeing a rheumatologist. Very interesting. As i am still trying to heal my gut and liver with food and supplements.

[Natura]

Use to get uti's all the time. Cranberry supplement works wonders. Makes the bacteria release. Might not be a total cure, but I take one daily.

[happytulip]

I agree with above advice. I've had an ongoing UTI/kidney infection for over a year.

Firstly they need to establish which bug it is. Then they need to establish an appropriate antibiotic AND the appropriate course. My UTI is now multi resistant to antibiotics because my idiot of a GP (I now have a good one) kept putting me on a course of antibiotics for a week. Which is fine in a non immunesuppressed person who doesn't have Lupus. Despite me pleading with him to extend the course he kept just trying other antibiotics which the infection was sensitive to. As a result I now have a UTI which is resistant to the 3 out of 4 antibiotics that would have initially killed it. Had he given me one antibiotic for 2 weeks instead of 1 week I would be in a different position. Eventually I had to be seen by urology who explained all this. Being a medical person I couldn't help but write a "I told you so, perhaps you should listen to your patients".

Urology advised me to take a strong cranberry supplement to make my urine acidic. I take two capsules everyday and if I miss one or two doses I land up getting a UTI and then need 3 weeks of antibiotic treatment. Urology advised to avoid cranberry juice as it's sugary and told me to avoid a lot of sugary drinks. I get really good quality cranberry from Holland and Barrett. It's expensive but worth it.

Good luck, hope that helps x

[LeavingLupus in reply to happytulip]

I am new to this forum and relatively new to SLE. I have had several bladder/UT "episodes" since being diagnosed 2 years ago. I eat VERY healthy and drink nothing but water. I have tried cranberry supplements in the past, but had minimal results. I am thinking that the product i was using was not that great. Can you please tell me what one you use? I would like to try it. Thank you!

[SquarePegGuy]

It sounds like you've got great replies with excellent advice. Just wanted to add that my wife was prescribed Levaquin for her UTI a few years ago. She soon developed acute tendonitis, one of the many side effects of this drug. So if a doctor offers to prescribe any fluoroquinolone (such as Cipro or Levaquin, for example), request an alternate. Here's an article from NY Times on the subject:

well.blogs.nytimes.com/2012...

As an aside, I wonder how many folks here who have Fibromyalgia took a fluoroquinolone....