Another urinary infection: This will be by third... - PMRGCAuk

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Another urinary infection

Manchesterlady profile image
22 Replies

This will be by third infection in eight weeks . Does anyone know if it's the PMR or the PRED. I'm currently on 15mg . Had bloods done yesterday and seeing my go tomorrow.

My shoulders are still painful in the mornings , but as the experts on here say , you have to pace yourself .i have made the mistake of doing to much on my good days , then the day after being exhausted.

I have found a Bowen therapist near my home and I do think that this is helping me , the day after my last visit I had no pain at all , but today my shoulders are as bad as ever.

I have learned so much from this site and am so grateful to the people on here who take the time to reply .

This is a very strange condition , which I am struggling to come to terms with. Would like to think that there is light at the end of the tunnel.

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Manchesterlady
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22 Replies
Mrsd12f profile image
Mrsd12f

Hi Manchesterlady,

This is more a case of support and empathy than advice, but just to say that, for a minute, I thought I'd written your post, myself! I've had a couple of UTIs, recently and currently, at the suggestion of my Bowen therapist, I'm trying cranberry concentrate, as I really don't want another course of antibiotics. I'm currently reducing to 9.5 from 10, so also a bit achy in the shoulders.

I seem to be suffering from anxiety, too, at the moment and think this could be due to the Pred., as well.

Anyway, no doubt PMRpro and Dorset Lady, who know what they're talking about, will be along shortly with some actual advice, but in the meantime, I do feel for you!

kingharold11 profile image
kingharold11

Hi had PMR for 5 years and have had dozens of utis during that time have come to the conclusion that they are worse during the summer and caused by dehydration and not drinking enough. I drink cranberry and water but can only stomach so much

PMRpro profile image
PMRproAmbassador in reply to kingharold11

I find it happens to me if I take my calcium tablets and then don't drink enough for some reason, like when travelling - calcium grit seems to form in the kidneys/bladder and irritates the urethra.

PMRpro profile image
PMRproAmbassador

Are they REALLY urinary tract INFECTIONS? Have you had cultures done each time and if so, what antibiotic were you given and for how long?

Three aspects here; the symptoms of a UTI are common alongside PMR but cystitis and urgency are only symptoms of an irritated bladder. That may be due to an infection - or to something called interstitial cystitis where the lining of the bladder is inflamed and which is more common in autoimmune disorders. And for a few people it can happen when they are on pred. Although mostly pred masks the level of irritation by reducing the inflammation.

This is a really detailed and complex scientific paper about it:

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

I have no idea about your background but you might find it interesting - particularly the management section at the end which is fairly straightforward (the rest certainly isn't!).

This site may also help:

cobfoundation.org/bladder-c...

You need at least a urine dip that shows leucocytes to say it might be an infection and a culture to confirm and get the right abx. They can give you abx until the cows come home, it it isn't the right one some of the bugs survive and are used to that antibiotic so when they meet it again survive even better. Something I suspect is the case in PMR is that the "short arms" syndrome that makes it difficult to toilet yourself properly means there can be a bit of faecal contamination around that area after you have been to the toilet. That means bugs that normally live in the gut and not the bladder are able to get into the urethra (the tube that connects the bladder to the outside world) and cause an infection. They are very keen on using just trimethoprim but that doesn't cover all the bacteria it might be - so they should do a culture, and especially so if you have had repeated courses of abx that haven't worked. Repeated infections close together then suggests they maybe haven't given a high enough dose of the right abx for long enough, there are some bacteria left over and they get growing again - can you have symptoms again. So you also need a culture done AFTER the course of abx to be sure everything is clear.

And let's be clear about this: IF it is a severe bacterial infection then NOTHING will get rid of it except abx. If it is just mild you may be lucky and your body will fight it off - but remember our immune systems are haywire anyway, they may not be up to it with just the assistance of cranberry juice!

kingharold11 profile image
kingharold11 in reply to PMRpro

They have always sent the sample I have taken to the lab for testing only then when the lab has said which abx are needed do they prescribe the correct ones.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Take it from me - there is light at the end of the tunnel! Just some days it seems like a blooming (or something!) long tunnel.

Can't help with your UTI, but lots seem to suffer from it. Think it's like loads of other so-called minor illnesses that we seems to get - it's a combination of a dodgy immune system and the side effect of Pred which seems to throw our entire hormonal system out of sync!

Early days I suffered from oral thrush on 2 or 3 occasions, but fortunately that cleared - never to return! Hopefully you'll get to that stage as well.

Manchesterlady profile image
Manchesterlady in reply to DorsetLady

Thank you for replying to my post . The doctor has done the appropriate tests ,and I think that like PMR pro says , maybe they aren't strong enough.

Mrsd12f . I have been trying something called D-Mannose which does ease the symptoms somewhat.do you find that Bowen works for you ?

Thank you for your support ladies .

One day at a time .

Greensleeves profile image
Greensleeves in reply to Manchesterlady

Forgot to mention Bowen technique is wonderful. My practitioner sorts my hips out every time.

Greensleeves profile image
Greensleeves

Hi , I get uti symptoms regularly. It's another miserable annoyance.

Burning and stinging, which leads to cystitis if not nipped in the bud , I think there are several causes , menopause being one of them with atrophy .

Dip stick always shows leukocytes but lab results usually come back showing no infection, although bugs are present.

GP gives me Cepholexin when it's bad , which stops the symptoms, strange when they say there is no infection .

I saw a urologist a few years ago who prescribed a nightly Nitrofurantoin and Vagifem .

I'm going to request to see a urologist again as I couldn't pass urine after recent surgery and had to be catheterised overnight . The catheter was more painful than not emptying my bladder. I'd had one years ago after my first birth and it hadn't been uncomfortable at all.

I'm sure everything has gone south and it's stopping the flow .

I'm going to mention what PMRpro has said to the GP because it's also quite likely I need a different antibiotic .

What family of antibiotics is it PMRpro ?

Seems there's a few things going on but it's also quite common for us PMR people.

Hope you get some relief . I've found making your urine as alkaline as possible helps and drinking plain water and lemon barley water . Also going to the toilet regularly and try to completely empty your bladder.

x

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

The culture shows which bug it is and they test for the most appropriate antibiotic so I can't really say "which".

Have you had a cystoscopy? That and a urethral stretch (it was too narrow) helped me immensely - the bladder wasn't emptying properly at times. I find it strange they say "bacteria present, no infection" when you also have symptoms.

I thought this was also a good article:

niddk.nih.gov/health-inform...

And something I noticed a long time ago was that if I was treated for thrush/candida it cleared up the UTIs. My GP gave me a long course of nystatin tablets and it worked - don't think you can get them in the UK nowadays though.

Here recently my GP recommended probiotics as vaginal pessaries - didn't come cheap but it does seem to have improved the recent symptoms.

Greensleeves profile image
Greensleeves

Great article thank you for sharing. I had a cystoscopy when it all started as there was bleeding but didn't have a bladder stretch.

My daughter saw a different urologist in a different area had a bladder stretch , and she's been fine since . My urologist said there was no evidence they worked and I said my daughter was proof that it was effective in some situations.

Surely after years of inflammation and some nasty infections there's going to be narrowing , strictures and scar tissue.

Apparently there aren't enough bugs/bacteria to get any growth . I've tried Diflucan over the years and had swabs but there's no yeast .

Think I need the test where they measure the flow . Don't fancy it but needs must .

After every ultra sound, I empty my bladder for the next test and there's always some urine left .

Speaks volumes doesn't it .

Will be my next 'thing ' to sort out next week.

Hope you stay infection free , we have quite enough to contend with.

Take care all . x

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

I've had stretches done in 3 different countries - the first was after I had daughter #2 in Germany, 15 years later in the UK and another 10 or so years later here in Italy. So 3 different doctors/medical systems who all thought they worked or they wouldn't have bothered. I'm glad they did - though all were done with no pain-relief which is a bit nippy-sweeties! Not usual in Germany or here - and bless them, the nurses in England were standing with their legs crossed! They couldn't believe it. I told them - no worse than period pain and far shorter!

Greensleeves profile image
Greensleeves in reply to PMRpro

Good lord , my daughter had a GA for hers and had discomfort afterwards but said it was well worth it .

I can't believe you didn't have pain relief.

My friend had one of her babies in Italy and he was pushed out by hands on manipulation of her uterus .

We must be wimps here :) well you obviously aren't.

I believe these bladder stretches do work and some of the Urologists get some new fangled ideas . Surely patients experiences and relief from the problems should be evident enough.

I'm thinking of changing my name to Flo the slow :)

x

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

:-)

It's really quite funny - they make a major fuss about a cold and demand abx for flu etc etc - but the hospitals are really quite hard about pain relief! When I broke my leg skiing I was rescued from the mountain and transported to hospital with nothing bar a young man holding me steady as we went round corners - they'd passed the trauma clinic in the village on the basis of the pain I was in when moved. I was examined, x-rayed, leg immobilised and transferred to the ward with no pain relief. They had to give me some so I could use a bed pan (after about 6 hours).

Post op I was told to ask for pain relief - but the male charge nurse refused "You have to put up with a bit of pain". The surgeon asked and I told him the truth and what the nurse had said. Never had any problem after that! I explained that I wasn't Italian and when I asked for pain I had already "put up with it", it was now too much. He was charming from then on!

Greensleeves profile image
Greensleeves

Awful, and rather cruel, I really don't know how you managed without pain relief .

We all have different pain thresholds but we're usually asked if we need anything for pain and if we're comfortable.

The charge nurse was hopefully reprimanded. The Surgeon must have thought 'what a woman '. :-)!

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

What me? Don't know - the surgery had been hilarious too. They came and did the "There's this or that... Or you could have a spinal anaesthetic..." Which I said was fine by me. So I was conscious - and unlike the UK I didn't get sedation! I was wide awake and waiting to listen to my chosen Mozart CD, Except I never had time as all 4 of the anaesthetists were desperate to practise their English :-) Try discussing the finer points of the difference between "I am boring" and"I am bored" while a surgeon is practising his DIY skills on your lower leg!

Greensleeves profile image
Greensleeves in reply to PMRpro

Haha it's like something you'd watch in a comedy sketch .

Unbelievable, conscious without sedation and looking forward to calming Mozart :)

I hope they finally worked out "I am bored " . :)

You're a brave dear soul and have my upmost admiration.

x

Doralouise77 profile image
Doralouise77

Please monitor your symptoms, the bacteria now really are super bugs......I am on my 5th consecutive course of antibiotic ......first infection I landed in hospital with septicemia....I had two weeks of IV antibiotic......then several weeks of oral with some IV extra in the ER.....,strange that 3 out of the 5 infections my urine wasn't showing growing anything.....and stranger still that I've had no urinary symptoms at all....

Cheers

Greensleeves profile image
Greensleeves in reply to Doralouise77

Very strange, was it a Kidney infection Doralouise ?

It's most worrying.

I hope you're now on the mend after what sounds like a frightening time.

Sending best wishes and a speedy recovery.

Doralouise77 profile image
Doralouise77 in reply to Greensleeves

Thank you Greensleeves, the only time we've been sure it was bladder/kidney was when the urine came back positive....it's distressing that I have no symptoms to catch it before it becomes dangerous.....

Cheers

Greensleeves profile image
Greensleeves in reply to Doralouise77

It is distressing, can they give you a one a day antibiotic to stop any further infections?

Hopefully they'll think of something.

Take care x

PMRpro profile image
PMRproAmbassador in reply to Greensleeves

That is a primary cause of drug-resistant bacteria developing...

Scary but the reality.

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