Urine infection : It seems that now I have a urine... - PMRGCAuk

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Urine infection

Content1 profile image
33 Replies

It seems that now I have a urine infection. Is this connected to pred or what? Of course no dr's appointment available, so they told me to phone 111, who after many questions, said they're contacting Dr and they have to ring me! So after an hour of phone calls and waiting, I'm back where I started from!

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Content1
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33 Replies
SnazzyD profile image
SnazzyD

oh dear, I know someone to whom the same scenario happened recently. They had called the surgery at 8:30 and via that roundabout route was seen at 6pm that day by a GP. To make matters worse no pharmacies in the city had Cephalexin. GP’s had gone home by this time so couldn’t get an alternative until 10pm next day. Most chemists hasn’t got Co-Amoxiclav either but in the end he got his first tablet in at 1pm. By this time he had a fever, kidney pain and looked awful on the video call.

You are more prone to UTI’s when you are on Pred as your ability or fight infection is impaired, especially above 10mg. However, Pred can also cause UTI-like symptoms due to being an irritation (as can calcium supplements) so keeping the urine dilute should help. Lots of us swear by D-Mannose from health food shops which work really well at preventing infections setting up shop too easily.

What are the symptoms?

Content1 profile image
Content1 in reply to SnazzyD

Pain before I wee and after, but not like cystitis. Not passing as much as usual and temp on and off. Finally been given Dr appointment for tomorrow

SnazzyD profile image
SnazzyD in reply to Content1

Good

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Unfortunately being on Pred makes you much more susceptible to all infections... immune system is suppressed... needs to be for PMR/GCA management.

And although I had a couple of infections on GCA doses in the first few months [not UTIs]- once they were under control, no more appeared.

piglette profile image
piglette

Urinary Tract Infections are on the list of Pharmacy First that the government has just brought out. Did you talk to a pharmacist?

Content1 profile image
Content1 in reply to piglette

Sadly there's a cut off age and I'm too old!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Content1

That’s useful… but of course there is! 🤦🏻‍♀️

Content1 profile image
Content1 in reply to DorsetLady

Apparently there are lots of different limits but they're different for each complaint! It's going to be so helpful 😂

piglette profile image
piglette in reply to Content1

Are they saying if you have a UTI and you are too old you are not allowed to ask a pharmacist for advice?

Content1 profile image
Content1 in reply to piglette

you can ask, but they aren't allowed to offer tests etc. They have to refer you back to GP or 111, which is the route I had to take and what did 111 do after lots of questions???? refer me back to GP which was were I started!!!

PMRpro profile image
PMRproAmbassador in reply to piglette

The reason is that the dip tests are not reliable in older patients. Which is laughable because the average GP ALSO relies on the dip tests ...

piglette profile image
piglette in reply to PMRpro

Are they asking pharmacists to do dip tests? That should be interesting in my village pharmacy.

PMRpro profile image
PMRproAmbassador in reply to piglette

Not thought through, any of it ... As usual ...

piglette profile image
piglette in reply to PMRpro

It’s only votes they are interested in is the trouble.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Content1

Sounds about par for the course… 🙄

Sharitone profile image
Sharitone

It's getting really hard to get an early appointment !

Receptionist talking to patient with an arrow in his back
Hunter134 profile image
Hunter134

I ve had a bladder infection for two years.My urologist put it down to the prednisone.I have e coli that I can't seem to get rid of.Very frustrating that no antibiotic is working.Iam sure you will get better.Make sure they identify what bacteria you have.🌺

Jantayl profile image
Jantayl in reply to Hunter134

Interesting. I am the same - have had continuing uti for the past 6 months. Bacteria keeps changing with the various antibiotics I have taken. Even been in hospital for intravenous. My GP has been good and helpful with each episode. I self-catheterise which does not help. I am currently taking 2 antibiotics - co amoxiclav and amoxicillin - on advice for the microbiologist. Not feeling too hopeful though- not feeling like doing anything or going anywhere while this goes on! Just want infection to go away.

Ruins67 profile image
Ruins67

please get antibiotics ASAP. I had a UTI before Christmas which went away after three days of antibiotics. Promptly came back five days later. They insisted on a sample this time before giving me any more antibiotics. By the time they got the sample, even I was disgusted by the look of it. Given one weeks of antibiotics (the same ones). Two days later, I woke during the night, teeth, chattering, shivering, vomiting, headache, temperature. This went on for three or four days.. I seem to get better only for it to return same night. By Christmas Day I was in hospital as infection has got to my liver. Early stages of sepsis. Given intravenous antibiotics In hospital Christmas Day boxing day and the day after. UTIs can easily lead to sepsis so please be very vigilant and get seen ASAP. by the way, I hadn’t had a UTI in over 40 years. The one and only one I ever had was when I was pregnant.

humlies profile image
humlies

I have had UTIs - or symptoms of- for about a year now. I had 3 lots of antibiotics which helped , but did not clear it up completely; I am now leaving weekly samples at the surgery, while they decide whether to refer me for a cystoscopy. The important thing is that it doesn't go to your kidneys - are you having back pain? Like many others here I am taking DMannose, which really seems to help. I do hope by now you are on antibiotics?

PMRpro profile image
PMRproAmbassador in reply to humlies

Has anyone suggested you use products for vaginal dryness?

This is a link to a media article but it is absolutely pukka - I will try and find the research

theguardian.com/society/202...

It is a long article - read it all. The most common reason for confusion in elderly adults is a UTI - one of the first things that the ED looks for an unwell elderly patient. UTIs turn to sepsis all too easily - and it is a piece of nonsense you can't get a GP appointment when you are elderly and have a UTI.

humlies profile image
humlies in reply to PMRpro

This is a really useful article - thank you. I knew from my training days that many UTIs were often diagnosed as TIAs, but I had not realised how lethal an untreated UTI can be. I was taken off Vagifem and put on to Estradiol a few years ago (cheaper??) and am wondering if this is as effective. My GP has told me to insert one pessary every day rather than 3 times a week as before.; I think I am very fortunate compared with many others on this forum in that I can get doctors' appointments!

salp1 profile image
salp1

I sympathize very much, urine infections or similar symptoms but not an infection have been problems for me for many years. I try and avoid having to take AB's by taking regularly Dmannose and upping the dose when I 'm fighting off symptoms, it also helps if you have to wait to see a GP and need AB's.Dmannose is a non harmful supplement, and partial preventative which can be taken in any quantity to suit you. It helps to put a protective coating on the inside of the bladder to create a more difficult environment for the bacteria to 'hook' onto the bladder lining, so get flushed out with drinking fluid.

Bacteria can 'hide' in the bladder lining and reappear when conditions are right, even after a course AB's, to return and flare again.

The Consultant recommended to me a support group which suggests using the brand 'Waterfall' as it is 100% pure without packing substances for bulking.

They are not cheap but they are an absolute lifeline to me.

Another Specialist said soluble vitamin C tablets are helpful to create an environment bugs don't like, for night time. However if you have an inflammatory bladder lining, as I have, they shouldn't be suggested as they are an irritant to the bladder wall, as is coffee and citrus fruits. Bugs 'love' sugar so it's generally suggested that avoiding sugary products e.g. chocolate, jams cakes, drinks etc and refined carbohydrates can help. Just my experience, good luck.

PMRpro profile image
PMRproAmbassador in reply to salp1

Any mention of this?

This is a link to a media article but it is absolutely pukka - I will try and find the research

theguardian.com/society/202...

It is a long article - read it all. The most common reason for confusion in elderly adults is a UTI - one of the first things that the ED looks for an unwell elderly patient. UTIs turn to sepsis all too easily - and it is a piece of nonsense you can't get a GP appointment when you are elderly and have a UTI.

PMRpro profile image
PMRproAmbassador

There has been discussion of this on the forum before - this is a link to a Urology journal article about the use of vaginal low dose oestrogen therapy:

ncbi.nlm.nih.gov/pmc/articl...

Zebedee44 profile image
Zebedee44

The calcium and vit D supplement you have probably been issued alongside the pred may be irritating your bladder and causing UTI symptoms. In the early stages of PMR treatment I suffered frequently with persistant cystitis type infections which required more than 3 days of antibiotics, some of which my body didn’t like.

After the last one which was also very stubborn the doctor gave me vaginal pessaries and I haven’t had a problem since. I hope you get some help from your doctor, meanwhile drink plenty of water and take some paracetamol. Best wishes, Chrissie

Elsabounre profile image
Elsabounre

They will have to call you as you will need some medication to get rid of this infection..in the mean time..ginger tea..and cranberries with lots of liquid will help

JaneC8403 profile image
JaneC8403

Always keep a tube of D Mannose in the cup

board very helpful 🦄🦄

Chosti17 profile image
Chosti17

I am an 80-year-old widow with no family. I was admitted to Broomfield Hospital as an emergency with a very bad UTI last Saturday morning. Hit and miss treatment and discharged on the Sunday evening. I told them that I still felt very ill but discharge went ahead. No Discharge Notice although I kept asking for one. Told me to contact my GP and ask for a Medication Review because they thought my drugs were interacting.

I phoned the GP surgery but they refused to speak to me and told me to ‘phone the hospital. I rang the hospital and they again told to ring the GP!

My GP surgery is Longfield Medical Centre in Maldon, Essex and they are appalling. This is the feeling of a great number of their patients.

A nurse from the Urgent Community Response Team visited me and took some bloods. She ‘phoned me at about 9.o’clock that night and said that my Inflammation Marker was 133 when it should be Zero!! She said that I should never have been discharged and that it was a Failed Discharge.

The next day a Paramedic ‘phoned the surgery and he was told that they would do the medication review on Wednesday over the ‘phone and visit me today, Thursday.

I have heard nothing from them.

The Urgent Community Response Team became involved again and ‘phoned the surgery. They were told that the surgery had no record of the call from the Paramedic! They are liars because the Paramedic in question has a record of it.

I am absolutely at my wits end to know what to do next.

PMRpro profile image
PMRproAmbassador in reply to Chosti17

So sorry to hear that - but there may be some comeback against the GPs. Paramedics keep detailed records - or their job can be on the line.

Chosti17 profile image
Chosti17 in reply to PMRpro

Yes, thank you but, as I am sure you will know, it is the uncertainty of having no contact with the GP’s when you are ill with no family.

PMRpro profile image
PMRproAmbassador in reply to Chosti17

I don't have that problem here thank goodness - just the being alone for other things

RT18 profile image
RT18

write to your MP!

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