Recurring UTI’s: Had appointment with Rheumatology... - PMRGCAuk

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Recurring UTI’s

Baner profile image
30 Replies

Had appointment with Rheumatology nurse this week and she wanted to check my recent urine infection had cleared. I didn’t have any symptoms and was feeling quite well so surprised when she rang on Thursday to say test showed an infection and I needed antibiotics and to get these from my GP, which I have done before. When I phoned my GP to request a prescription the doctor I spoke to said he doesn’t give antibiotics for UTI’s if there are no symptoms. I explained that Rheumatology at hospital had said I needed abx but he was adamant. He asked me to submit another sample to the surgery and he would look again when results were back. He said “ladies of a certain age” could have “permanent” urine infections and unless they had symptoms they do not need antibiotics. Does anyone know if this is correct?

In meantime I am using D Mannose daily and have let hospital know what GP has said and just waiting to see what happens next. Very frustrating.

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Baner profile image
Baner
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30 Replies
PMRpro profile image
PMRproAmbassador

Hmmm - wouldn't be my GP for long!! Especially since when on pred you often get no symptoms BECAUSE of the pred! And longterm UTIs can ascend to the kidneys and THEN you can be in real trouble.

Recurrent UTIs, with or without symptoms should result in a referral to a urologist.

Baner profile image
Baner in reply to PMRpro

It’s a group practice so you never know who you are going to speak to. If you want a specific doctor you need to make an appointment and there is a 3 week wait for that. Our practice is considered to be the best one in our area. I’m going to try and speak to Rheumy Helpline when it opens on Monday.

borednow profile image
borednow in reply to Baner

3 weeks is not bad. We get told 4/5 weeks minimum. Answer machine threats from the GP have been reduced somewhat - now we're told how busy they are but we will still be "deregistered" if we complain. I am fast running out of money having to resort to private GP's. And I am fed up of being nice to the GP's!!!!!

Baner profile image
Baner in reply to PMRpro

On the subject of appointments, Rheumy Nurse said as it’s been 12 months since I’ve seen the consultant she would arrange for another appointment with him. Got text yesterday appointment is for 24 June 2024. Given that when I first saw him in early 2022 he told me the PMR would most probably burn itself out in a year. Shortly after I found this forum and realised that might not be the case!

PMRpro profile image
PMRproAmbassador in reply to Baner

Words fail me!

autumnlass profile image
autumnlass in reply to PMRpro

Absolutely - mine did ascend to kidneys and I was in real trouble. An urologist opinion is what you need.

SnazzyD profile image
SnazzyD

What was the test? Culture or dipstick?

Stills profile image
Stills in reply to SnazzyD

sounds like Dr was this the dipstick in this instance

SnazzyD profile image
SnazzyD in reply to Stills

Are you meaning to reply to me?

Stills profile image
Stills in reply to SnazzyD

yes, it just a daft reply following your comment that made me laugh

piglette profile image
piglette

One does sometimes wonder if these doctors just make up things they say to us just to shut us up.

Nagswoman profile image
Nagswoman

Oh dear, oh dear. I would (I have) put in a complaint to the surgery and if you do not get an apology, or the correct attention, then discuss it with your local MP. Our surgery is being monitored by the MP on a weekly basis as they are so useless. This is unacceptable. I am just finishing pivmecillinam for my 39th UTI since Sept 2015. In that time I had a course of iAluril, which left me UTIless for 3 years. Since I have been on a different DMARD, having also stopped the other one 3 or 4 years ago, I am on my 4th UTI of the year. I expect infections, but these need to be managed due to reduced immunity. Our GPs are having the same attitude as yours. I am not going into detail but when we did as we were told recently, after the surgery not regarding a UTI as relevant and headed off to a walk in centre, I called 111 on the way who actually made me a phone appointment at the GP so I could drop my sample in there. Sadly, we did not make it home, from near the walk in, without me having to do a pee on the motorway. Not nice. By the way, the other half was very ill late in 2017. He thought he had food poisoning. I saw the signs and dragged him to the surgery, which was excellent then. Yes, he had a UTI and CRP of 237. The next day GP phoned and said take him to hospital. Maybe men have a different version of UTI. Not.

PMRpro profile image
PMRproAmbassador in reply to Nagswoman

If a man has a UTI it is a serious matter ... Not joking, they are less likely because of anatomy ...

Nagswoman profile image
Nagswoman in reply to PMRpro

Yes, we have a short urethra. Theirs is long.

PMRpro profile image
PMRproAmbassador in reply to Nagswoman

Size matters ;) Or so they say ...

Nagswoman profile image
Nagswoman in reply to PMRpro

🤣🤣🤣🤣🤣

Stills profile image
Stills in reply to PMRpro

my ex husband had recurrence of UTI listed as combined cause of death with Kidney failure on the death certificate after two years of continuous infections. I must add he had many other complications that also contributed.

Greensleeves profile image
Greensleeves

I get constant UTI’s , I’m taking antibiotics more than not . All since being on Pred and culminating with menopause I suppose, now have CKD .

As I lost my grandmother due to a UTI that travelled to her kidneys, it’s not something to take lightly.

I send my samples to a private lab , NHS testing hasn’t changed since the 1950’s .

You can get antibiotics from some chemists now , but run the risk of not getting the right one for that particular bacteria.

Hopefully you find a more helpful GP . x

rosie_jones profile image
rosie_jones

Hi there. I've had the "ladies of a certain age" conversation too - such a hateful coy euphemism for post-menopausal women. Anyway, below is a link to some NICE guidance on possible treatments for recurrent UTIs. One of my friends was given a low-dose antibiotic for a year - my GP has gone down the route of vaginal oestrogen. I've had 4 UTIs over the winter, so she sent me for a ultrasound renal tract scan (all clear) and prescribed Vagirux. 5 weeks into the treatment - so far, so good. (Am on 3mg of prednisolone after 6 and a half years of treatment.)

nice.org.uk/guidance/ng112/...

Baner profile image
Baner in reply to rosie_jones

Thanks for link, very interesting. I was also once told by a doctor “you can’t expect everything to be working properly at your age”, so demoralising.

Stills profile image
Stills in reply to rosie_jones

for years I thought I had UTIs or thrush but eventually got a diagnosis of interstitial cystitis

ParoaPrimary profile image
ParoaPrimary

Hello Baner.Many people who have a history of UTI'S report that drinking unsweetened cranberry juice is most effect at keeping this problem at bay.Also a UTI can be a result of a stone in the bladder which ' promotes ' infection, and there may be no indication of a stone ,without an ultrasound.I actually had a 10mm bladder stone which created a UTI and only the ultrasound indicated its' presence as i had no pain etc., only the UTI.I was able to dissolve the stone through a herbal mixture and i understand ' Chanca Piedra ' does the same. I can say that when i had a followup ultrasound the technician was more than a little surprised when they could not find the stone, and actually checked the first ultrasound to ' confirm ' what i had told them. I am not sure if i should have kept my little ' secret ' as to how i got rid of it.Anyway, it certainly beats surgery to fix the problem.Hope you can take something from my comments.

Baner profile image
Baner in reply to ParoaPrimary

Thank you for your input. I find D Mannose very helpful with UTI’s. I had gall stones a few years ago which resulted in having my gallbladder removed after it became infected. I will do some research on Chanda Piedra as I am a fan of herbal teas.

ParoaPrimary profile image
ParoaPrimary in reply to Baner

Thankyou Baner for this information, also referred to by PMRpro.Currently i am taking Cranberry Concentrate capsules 30,000mg Plus C but will look at getting D - mannose in future.

PMRpro profile image
PMRproAmbassador in reply to ParoaPrimary

Just to mention that D-mannose is the critical ingredient in cranberry juice so taking it in its original form makes more sense.

Mayadill profile image
Mayadill

Hi Baner, I think the combination of the insufferably twee 'ladies of a certain age' and the refusal to prescribe would make me do a runner from that surgery if at all poss.

Baner profile image
Baner in reply to Mayadill

Our GP surgery is the best of a bad lot where we live so stuck with them I’m afraid. The second urine test he insisted I did has confirmed an infection. I have now spoken to a different GP at the practice who agreed if hospital wanted me to have antibiotics I could have them. I am now taking them but still using D Mannose which I think is very effective.

PMRpro profile image
PMRproAmbassador in reply to Baner

Hope he shuts up then - he just looks a prat really ...

Baner profile image
Baner in reply to PMRpro

I’ve mentioned this episode to some neighbours and they’ve all said what a pompous twit to is. Some even refuse to deal with him. When you phone to speak to duty doctor you don’t know who you will speak to, unfortunately I was unlucky day I phoned. To get a specific doctor have to make an appointment and at present first appointments are in 3 weeks. Not a good time to be unwell in the UK.

PMRpro profile image
PMRproAmbassador in reply to Baner

And why I'm staying here as long as I can! It'll be 2+ weeks before I can see my GP in person - but that's because she's off on her jollies. Her substitute is lovely too and in the village, don't have to drive to see her.

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