Not pleasant to write about but back in January I had Thrush (said to be antibiotic induced) this led to a suspected UTI for which I had no symptoms. I thought everything had cleared up but then started to have very strong smelling urine on and off but especially first thing. Urine test highlighted low level infection and I took the standard 3 day prescription of antibiotics. Still no other symptoms but apart from the problem becoming more constant nothing changed so contacted the surgery. Another urine test gave the same results and the same course of antibiotics was repeated. Again no change. Coincidental regular full blood tests showed everything in normal range (including kidney function and CRP 2 as usual). Then saw lovely Doctor who genuinely took interest in my wider health issues and the role these and meds may be having. A further urine test gave exactly same readings so she suggested antibiotic for 7 days and if no improvement referral to Urologist or Microbiologist. I finished this course on Friday and sadly I don’t think it’s done the trick. I know illness and Pred makes me more prone to infections that can take longer to cure but in advance of me getting back to the Dr this week I wondered if anyone else has experienced anything similar and how they overcame the problem
Ongoing UTI: Not pleasant to write about but back... - PMRGCAuk
Ongoing UTI
Have any of your urine tests been cultured in a lab or do you mean dip test?
Have a look at this too about chronic UTI’s
cutic.co.uk/what-is-chronic...
Yes Each culture test comes back with the same readings from the lab. Each time has also said “sample still with lab for further report” but then no update. As I understand it nothing further has developed in terms of bacterial growth. Thanks for your response
Yes - but it actually had been a problem previously and was partly due to narrowing of the urethra and resulting incomplete emptying of the bladder. Any bugs present then get to grow and keep the infection going. They sorted that and the incidence of cystitis dropped.
However - as SnazzyD asks, have your urines been cultured in the lab to identify the causative bacterium and get the right antibiotic? Dip tests are notoriously unreliable in older patients and simply repeating the same antibiotic and expecting the same result may well be a definition of madness. And it is how resistance develops.
Interesting your comment regarding having another problem as the Dr and I did discuss the fact that my prolapse has become more pronounced of late and whether that might be contributing to keeping the infection going (I already had an appointment re the prolapse to be looked out later in the month) . As for the chosen antibiotic I did think that but understand this is the one recognised as best to deal with Uninary infections.
That is a distinct possibility - even vaginal dryness can be the primary problem.
It may be thought to be best - providing it is the right bug, sometimes it isn't!!!
I’d want to be talked through the results properly and if they are incomplete then the GP needs to chase it. Also, you need to know exactly why they are prescribing what they are. The antibiotic is only the best if your particular bugs are sensitive to it.
Thanks for your response. Perhaps I didn’t phrase it properly but I understand the lab reports were complete it was just that there wasn’t then anything further to add after their original comment of Coliform being present. Also Nitrofurantoin was one of the drugs recommended by the lab. In hindsight perhaps I should have asked to try one of the others when that didn’t work
Ah so there WAS a bacterium noted. So it sounds like that after a few treatment failures someone needs to step back and look at the big picture. By that I mean look for ongoing structural issues, current bladder emptying capability, bacterial resistance such as in the case of chronic infection where the microbes attached to the bladder wall make it easy to hide. The link I sent explains this. Pred and low oestrogen won’t be helping but repeated short courses don’t sound like they are effective.
Thanks for interest I have now got a list of things to check out with my GP when she rings later. We did previously discuss whether my prolapse becoming more pronounced recentlynmay be providing somewhere for the microbes to hide. I haven’t noticed any change in bladder emptying capacity or frequency of going to the loo. Interested what she has to say and whether she’s decided whether it’s a urologist or microbiologist (or neither) that she wants to refer me to
I have had a few issues with UTIs since being on pred. Initially I tried to deal with them with cranberry juice and constant fluids. That helped initially then came a whopper that at new year. GP responded rapidly with Nitrofurantoin, the nuclear option with some rare but very serious side effects. At the time the NHS was overwhelmed with flu, covid, other bugs and I think they didn't want another older person admitted. 7 days and it worked. What was your antibiotic, two lots of 3 days seems mean??
yes it was Nitrofurantoin. I’ve never been prone to UTIs but know others who are and have had the 3 day dose. Perhaps if I had been given 7 days after that didn’t work it might have cleared up. I didn’t see a Dr at that stage whoever picked up the test results just sent a text to say they were sending the prescription to my pharmacy. Doesn’t seem to have got any worse but annoyingly hasn’t gone completely away.
I have had a series of UTI's since taking Pred. I was diagnosed with PMR in 2019. I was prescribed Nitrofurantoin which briefly helped but the UTI's returned with a vengeance. I had awful side effects with Nitrofurantoin and went back to the GP and asked for a different antibiotic and never to be prescribed Nitrofurantoin again. He complied with this and I was given a 7-day course of another antibiotic and the infection cleared. I hope another antibiotic my produce the same results for you. Kindest regards.
Thanks. When I looked back at my test results on the NHS app I saw the lab listed 4 possible antibiotics so not sure why I got prescribed the same one each time (different doctors). Have a call booked today for the same Dr I saw last time so will ask. I have had a few different symptoms over recent days which I thought might be down to Nitrofurantoin but it’s always difficult to know what’s due to my illness, what’s down to tapering Pred or is it something completely different. I guess as time goes on I’ll get to determine the difference
Sorry the 7 day hasn't worked, my GP was very scary re the side effects so thought it must have been an unusual prescription for UTI. How much pred are you on atm? I see that you have been on high doses, me too, 60mgs at one point when the UTI thing started. I'm down to 10mgs now and since reducing from 15mgs I have had no issues🤞, hope the same for you.
It was one of the drugs listed on the lab report. But I think the 3 day dose is the norm. I was on 15 mg when this started and at 12 at present due to go to 10 in April. Just need it to clear up and hopefully it will be a one off as I can just picture my consultant rubbing his hands and saying “it’s due to Pred so you should start on MTX like I said “😇
Except MTX lowers your immunity too!!!!
Ah yes, the old MTX question, it may help, does for some I understand but certainly not everyone. I resisted this from the Moorfields consultant who was very respectful of my wishes to just slowly reduce pred. Another drug with another set of side effects wasn't appealing given that I have managed to pick up almost all the pred ones! I was caught between 2 disciplines really but given that I do not have a rheumy atm I rely on my GP who has had PMR so lucky there. Let us know how you get on, fingers crossed for you, UTIs are so unpleasant. x
Yes my consultant is rather arrogant and really didn’t like the fact that I have decided MTX isn’t for me having done a lot of research and sought experiences from fellow sufferers.
The point about any drug is, you don’t know if it’s going to work for you unless you try it… you can read as much as you like and get others opinions - but that’s them, not you. None of us would probably take Pred if we read the information leaflet before being offered it… but of course it’s your choice, but reading about it isn’t the same as trying it.
Thanks I appreciate that but even the guidelines the consultant referred me to said the three random trials of MTX only showed a modest benefit in reducing accumulative steroids for GCA/LVV. If my illness symptoms ever started to include joint/muscle aches and pains or I got to a stage where I was having difficulty in reducing Pred without my overriding symptom of extreme fatigue returning then I might reconsider trying a sparing agent such as MTX. For now I’m happy that I’ve made the right decision to for my circumstances to just continue to taper Pred. As you say you don’t know til you try.
Agree, I’m not sure I’d have taken it if offered -but luckily my GCA was well managed on Pred alone…and very little in the infection line -just one dose of oral thrush early days -soon sorted. Know I was one of the lucky ones.
Not sure if this may help. I self Catheterise since 2019 - PMR 2017. Have had numerous UTI’s and various antibiotics. Cannot take the Nitrofurantin. From Oct 2023 I had a continuous UTI in that I was prescribed antibiotics which cleared the infection while taking but 2 days after completing the course infection came back. I have been hospitalised, had daily intravenous treatment but nothing worked long term. The lab has identified the culture - ecology. Last summer I was given ‘Instillation”’ treatment for 6 months which did help break the cycle but I still get infection but not so often. My local urology dept continues to help and discuss other possible solutions.
Thanks. Doesn’t sound good but always helpful to share experiences. I’ve never been prone to ITUs in the past but from looking it up had expected some sort of stinging or pain and more trips to the loo but thankfully I’ve had none of that 🤞Does your urologist say it’s steroid related?
If no pain or stinging etc it may be pain from your prolapse, vagi do dryness, muscle spasms, constipation etc.
I was treated forever for UTIs and now thing it’s from some of the above, plus a nerve in my back (referred pain). Doing levels, relaxation exercises (for pelvis), back PT & eating enough fiber helps, but still flares up. Weird smelling urine cd be from food or supplements. E. coli is a common contaminant in urine samples as well.
Hope you get answers/treatment & feel better!
No related pain or discomfort thank goodness but smell is embarrassing. My first thought was something I was eating and tried to eliminate possible suspects but urine lab tests have repeatedly shown the same level of infection. As for prolapse I have managed that for years but just recently it has become more pronounced so going to get it checked out. Not sure if this relates to having a polyp removed or Pred making my muscles weaker or just a coincidence. Dr did say it could be a reason the infection is hanging around. Thanks for your thoughts
No. They say it is because I self catheterise - my bladder does not work - but as I have been on steroids for 7 years started at 60mg for GCA also - my immune system is low. But this is the worst it has been. I do not get the pain and stinging but a lot of discomfort and dizziness, nausea. I find it difficult to plan or to go anywhere although trying to cope and GP lets me have emergency course of antibiotics.
In the end it seems we have to find the solutions that suit us best. Hope you feel better soon
May I suggest you speak to your GP about vaginal oestrogen? It’s known to help guard against UTIs - any woman of any age can take it and it doesn’t affect any existing conditions as the absorption level is low and the dosage level is tiny. It’s applied either as a pessary or cream a few nights per week.
Thanks for suggesting it. yes I’ve had the pessary version for many years due to a slight prolapse. I’ve not previously been prone to UTIs so was surprised this wasn’t something that quickly cleared up
Hi Obscureclouds, I also was given 2 lots of Antibiotics for UTI, they didn't work so I discovered a natural method of 1/4 tsp Bicarb, add drops of lemon juice from a lemon or a bottle, add water 1/2 a beaker. I take it daily & it certainly seems to keep them at bay. Fingers X! Take care.
Worth a try. I’ll give it a go thanks
I seem to get UTI every few months, very nasty, but usually clears up fast with the antibiotic ... this time Im not sure its properly gone ... no pain but constant wking up to go to loo at night, and more frequent in the day. Could be other things, like blood sugar... made GP appointment to discuss strategy after blood and urine tests. They seem to give 3 days nitrofurantin immediately and look at others if it doesnt clear up or if a urine test shows unusual bacteria.
Thanks. I did ask about the sugar as soon after it first occurred I received a message from GP to say my sugar levels were up (settled now) but she said I would need to have had high sugar for a much longer period for it to have had any effect. I do hope we both get sorted soon
Have you tried D-mannose? Taken promptly, I find it can head off cystitis caused by calcium grit.
Secondly, just an outlier possibility -- are your urinary (and/or blood) calcium levels elevated? It could indicate hyperparathyroidism. The parathyroid controls calcium levels.
It is perfectly possible for calcium grit to form in urine without a parathyroid problem. Several on the forum in the past have had to drop their calcium supplements, or at least lower them.
Thanks for suggestion. I’m still on fortnightly full blood tests and all markers have been in normal range but I’ll check if anything shows a shift in calcium levels as I do take Adcal 3 twice a day and in January had a zoledronic infusion
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