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PMRGCAuk
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Yet another infection!

Hi all

I have been on pred since Dec 2016 (started on 15mg and now tapering to 5mg). I seem reasonably OK generally but have had at least 8 courses of antibiotics since January for urine infections. I have no pain or burning sensation just disgusting smelling urine and having to pee frequently - hopefully my bottom is not on camera in North Wales as I always have to hide behind a tree, rock or a sand dune when we are out walking our dog!! Apparently the usual antibiotic (can't remember name) used for urine infections I am resistent to and another one tried made me feel very ill (worse than giving birth!). I have to phone docs this afternoon regarding latest urine test so perhaps they have some other pills to try? I drink plenty of water and try to eat sensibly but it keeps coming back. Any ideas please?

Thanks.

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I had an almost permanently irritated bladder for a number of months, there was pain if I didn't go immediately. Urine tests didn't show any infection. I am not troubled by this symptom now I am on 7 mgs. Nothing really helped although I drank a lot of Cranberry juice. I think it was a Pred side effect, possibly making urine more caustic. Horrible , you have my sympathy. This too will pass. The antibiotics may be making things worse with Thrush setting up camp.

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Thanks for quick reply. If the infection is not causing any serious damage to kidneys or elsewhere I would rather put up with it than take yet more antibiotics which do not seem to work for long anyway. At least I might avoid thrush!

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Oh dear, yes it can sometimes be difficult to get off the UTI train. Have you been given the antibiotics on the basis of symptoms, dipstick or actual organisms and their sensitivities by specimen culture? One can have microorganisms growing in wee that can make it smell a bit whiffy without it being badly infected or it's just transient.

I have noticed my own wee smelling stronger on Pred and at odd times I can smell Nitrites (produced by certain types of bacteria) but it goes if I drink more. I have noticed bladder irritation with Pred if my wee gets too concentrated and this has got less with reduced dose. One thing about Cranberry juice is that the drinks often contain high levels of sugar which can make matters worse. Last time I looked, the research was inconclusive as to whether it makes a big difference but might stop bacteria setting up shop on the bladder wall. I decided I feared sugar more.

The usual antibiotic that is used as a first step and to which there is widespread resistance is Trimethoprim. Another common one used is Nitrofurantoin.

At my old GP practice, if a patient had as many confirmed UTIs as you over this time, we would have sent them to the GP to be referred to the Urologists.

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Hi, my sample is first tested with a dipstick and then sent away for more tests. Yesterday the nurse said there was blood and protein in the urine which she said suggested an infection. Trimethoprim (I think) was given to me several times but each time it either didn't work or it came back. Nitrofurantoin I had a bad reaction to after only 2 tablets so bad I went to out of hours local hospital because I was/felt very sick, flu like and also stomach pains - I just lay on the chairs in the waiting room feeling like I wanting to die!! The doctor give me an injection for the sickness and the next day I was OK. She also gave me a "strong" antibiotic Ciprofloxacin 500mg for 5 days which seemed to sort it out for a bit but it has returned. When I went to my GP for my 3 month check I told her about this antibiotic and she said it was the equivalent of Domestos!

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At least they are not just going by the dipstick which can indicate cystitis that may go on its own rather than needing antibiotics. Blood and protein can be produced when there is inflammation and not necessarily an infection and it can also be positive if there is contamination from vaginal secretions. It is therefore very important that the area is washed before the sample is produced. Are you getting a return of the same organism or different ones?

For what it's worth, I've seen people with repeated infections because of using hygiene products (even those marketed as specifically for feminine hygiene) in that area, that mess up the the protective mucus layer and mucks up the acidity, so they lose a natural barrier to infection.

Another thing to look at is if you are eating anything in large quantities or taking any supplements that might cause irritation of your bladder. I got it with high dose Vit C that wasn't slow release.

nhs.uk/conditions/cystitis/...

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"Are you getting a return of the same organism or different ones? " No idea - I will ask this question. I do not take any other supplements/vitamins and only use Sanex shower gel or something similar. I did have a shower before going to surgery so would expect the sample was not contaminated.

Thanks very much for all your input.

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Sorry to hear you're so troubled by repeated infections. Know what you mean about ladies peeing in the great outdoors.......After getting stuck in a traffic jam recently my need to pee became urgent. I have to take diuretics for a heart condition which increases the frequency. Nowhere to go- had to use a pub car park as the pub itself was closed!! I've now ordered a device called a Shewee which comes highly recommended. It fits the female anatomy so you can pee standing up ( yes really! ) and has some granules that convert liquid to solid......I will keep it in the car for emergencies. And I'm going to take it on holiday later this month.

Hope you get sorted with this soon

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Hi, thanks for your suggestions. I have seen it advertised but wonder how you use it when wearing jeans? I shall have to investigate. Please let me know how you get on and have a wonderful holiday.

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I had repeat infections once and found out taking baths were causing the problems.I Than took showers which solved the problem.

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Hi, We do not have a bath, only a shower and bidet but it is something else to bear in mind!

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At a meeting of our PMRGCAuk Surrey group on Tuesday, this subject was raised with our guest speaker, a Pharmacist. She recommended Potassium Citrate which comes in sachets which have to be mixed in water and taken as a drink 3 x daily. She also recommended probiotic tablets which she said prevent the bacteria of the UTI clinging on to the walls of the bladder.

I so sympathise and empathise. I have had 3 UTIs since February, all different bacteria therefore all different antibiotics with one of those ABs (Cefalexin) landing me in hospital, isolated with Clostridium Difficile! In fact, most of the antibiotics caused me more trouble and pain than the infections! Eventually an ultrasound revealed a grey area on the bladder which was subsequently removed and found to be a benign polyp - phewee! They said the reason for the UTIs was probably that the bladder entrance needed stretching so this was done at the same time as the polyp under general anaesthetic. The end of my problems? No! Here I am 7 weeks later with yet another UTI!!!! I'm sooo frustrated and disappointed, and waiting for yet more antibiotics when the results of the culture come back tomorrow! And I've been off steroids for over 4 years so can't blame them.

It does sound as though your problems may be Pred- or PMR-related, starting so soon after commencing Pred. I remember having unusual urgency problems soon after starting Pred. The inflammation of PMR affects the muscles, and the bladder is a muscle!

A horrid side effect for you. Perhaps the potassium citrate or probiotics (or both) may help you. You could perhaps discuss with your pharmacist first. Good luck!

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This is very useful information, thanks. I shall have a chat with the pharmacist and see what he says. I do hope your problems settle down because I hate the idea of taking so many antibiotics for what I suppose is a minor problem. I don't want to become immune to them. To nake it worse, Gwynedd are closing public toilets and want to close more!

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Having originated from South Wales, I return there every so often - I'll have to remember to give Gwynedd a miss! Or invest in the Shewee recommended by linda 49!

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A close friend, who has had consistent UTI problems for well over 3 years had an appointment, once again with her GP. Well the usual GP was away and a young locum was taking his appointments. That young locum was appalled and immediately arranged an appointment at the hospital Urology Dept. Needless to say once she had that appointment she has had good treatment and no recurring UTI for nearly six months and counting.

If you have persistent problems with UTI ask for an appointment with the Urology Dept.

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Good idea. When I phone for result I shall ask for a chat with the GP (by phone).

Thanks for taking the time to reply.

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Exactly. I saw him yesterday and he put me on Vesicare.

Slept until 12pm! and it's gone like a miracle. All these years of suffering.

I am going to have a cystoscopy and bladder function test the week after next. As a precaution really.

My GP husband and Partner are in for it, another need for us to education these doctors. My urine didn't grow anything so antibiotics would never work anyway and I had two lots

In fairness

As he did say I could try something to calm it down but it's been over two weeks of misery

I was going to cancel my cataract for next week, I have either missed or cancelled things all the time but I have spoken to them and they say if I get a dry eye which is a potential side effect, they will deal with it

There is a God

Thanks for your support

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I'm given 11 days of iv antibiotics because of bladder infections that have no oral ones that work on the strain I get. Have to start one today. Last one was in march and I wasn't even in prednisone yet. They are becoming very common with the general population now.

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Thanks for your information. I shall have to try and find out more regarding strain(s) that I get. I never think to ask and most of it is me taking in a sample to surgery and then someone phoning and saying there is a prescription to pick up. I can't keep taking antibiotics for ever - perhaps I should just ignore it?

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Never mind your GP messing about with various versions of antibiotics. Particularly if they are handing out Ciprofloxacin. It is a member of the fluoroquinolone group and shouldn't be used along with corticosteroids. Each on their own can cause achilles tendonitis, both together increases the risk of it happening. I spent 9 months on crutches because my GP did that to me.

Tell them you would like to be referred to urology for investigations as to WHY this is happening. There are physical causes of this that can be remedied. If the bladder doesn't empty properly for example - the bit of urine that is left over can lead to all sorts of problems. But these are things that really don't figure on the average GP's radar. Nor do most of them think about ascending infection - affecting your kidneys. And THAT can be really nasty.

Demand an audience with urology!

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OK boss will do! I was hoping you would reply and thanks for advice. Phoned surgery but tests not in yet so have to phone tomorrow. I shall ask to speak to GP and follow your advice.

Thanks again.

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Just an update. Surgery has just phoned to say that a prescription for antibiotics, Trimethoprim I think she said, is available for collection tomorrow. I said I was unhappy with this as I had been prescribed this many times and it did not work and I did not wish to have any more antibiotics.

I requested to talk to the GP and was put through straight away. The GP said she had prescribed the antibiotic as as I had an infection. I told her this was at least the 9th lot this year and requested I saw an urologist. She agreed at once and asked me to take the antibiotics over the weekend and I have an appointiment next Tuesday with her to discuss this. I am not sure of waiting times for referrals but this is North Wales so could be some time! I will let you know how I get on.

Thanks again.

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That's a very good start!!!! A lot is because they just don't look back at the notes - if they did it should be ringing alarm bells.

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It seems that Urology hasn't done me much good as regards the numerous UTIs this year, PMRpro, with another one underway at present (results expected in tomorrow). I guess it will be back to the drawing board for me. I so don't want to take yet more antibiotics - I've had about 8 courses of ABs so far this year.....and I hate taking pills!

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It's like Facebook - need a "Don't like" button...

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Definitely! Though not familiar with Facebook - is it that bad?

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Twin

Have you tried a teaspoonful of bicarb in as little water as possible. Repeat two hours later...................OWT but it can work.

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Thank you for that suggestion, jinasc, but I had been considering potassium citrate, until I realised that I'm supposed to avoid all salt, so feeling a little unsure about the bicarb as well. However, if it's only two doses in a couple of hours that are required, then I'm thinking perhaps that might not be too much salt. Hmm!xx

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Potassium citrate is PROBABLY perfectly OK - the lo-salt products are made with potassium salts, it is the sodium part that should be avoided. No sodium in potassium citrate...

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Many thanks for that info, PMRpro. Apparently, there are different brands of potassium citrate coming under different names, one being cymalon. The pharmacy have ordered it but haven't got it in yet. However, the pharmacist was not happy about me having it until I have spoken to GP, as it carries a warning for anyone with kidney disease to speak to their GP first! Meanwhile, at least I'm not in pain - strangely, that usually arrives within hours of starting the ABs!

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FB has a Like button, much like the one here except it shows up a a thumbs up, - and recently have added a choice of emojis for Cry, Angry, Wow and Big Smile (think that is right). But to be honest - none of those implies plain "Don't Like" do they?

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I keep receiving a pop-up saying words to the effect that different people I know "wants to be friends" on FB. Might give in and join one day!

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Where? If you aren't "on" FB people can't send you friend requests - so I'd ignore them!!!!

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I'll check "where" next time. But they're people who have my email address and wish that I'd join FB!

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Have you been hacked?????????

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No, not "hacked" (hacked off sometimes, maybe!). They're people I know!

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I have the urine issues too. But tapering off pred. Is causing me to have sinus issues, but again no infection. Really irritating and very uncomfortable. Often difficult to know if it's a side effect or not. I would say not to have anymore antibiotics until you know what you are treating.

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I am seeing GP on Tuesday and shall request more information as to which bacteria/strains are causing the problem. Then I shall take a written list of all the information given by everybody on this site and ask her what she thinks! Also I shall definitely REQUEST an appointment with Urology. I have today collected a 3 day course of Trimethoprim (not optimistic they will work) and see what happens on Tuesday.

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hi Calvi

I sympathise, having had five episodes of cystitis, strange smelling wee and antibiotics since March. After several attempts to shift them with timepthoprim and ciproflaxin, the young duty GP recognised that It was an e-coli infection resistant to antibiotics and finally my regular GP referred me for ultrasound and prescribed nutrafurantoin.

Like you, after two tablets I was extremely unwell, so the out of hours doctor changed it to another abx which appears to have worked. Last Friday, a week after finishing the course, I left a urine sample which evidently showed blood and was sent for cytology but for some reason has not been reported on yet. I left another sample yesterday when I went for blood tests.

You might be comforted to know that the ultrasound appointment came through in less than two weeks at my local hospital in Carmarthen. It did not show damage to the bladder or kidneys and confirmed that I am emptying my bladder. But I am aware of heat and occasional pain in my pelvis so not convinced the infection has gone.

For the record, the potassium citrate is available at Home Bargains for substantially less than it costs at the chemist, a tip from my hairdresser.

Hope you get to the bottom of your problem without exposing your bottom too much more, haha

Chrissie

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Hi Chrissie, I remember reading a month or so ago about a lady in Scotland who sounds as if she has a similar problem of having to wee often. She was in the sand dunes next to a golf course and was photographed by some players who complained and I think she had to go to court - I can't remember the outcome! I think I will try to get some potassium citrate and try that - is it working for you?

Thanks

Fiona

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Like all of you poor ladies with constant UTI's I also have had many infections which I now control with Mannose which I take all the time. This gets on top of an infection quickly if increased dose is taken. Not had an antibiotic for 9 months.

I also have to be very careful what I eat and drink as the slightest acid or spicy food cause discomfort in the vaginal area - also tea, coffee, fruit juices, alcohol and so the boring list goes on but it is wonderful to feel comfortable.

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Hi, just had a look at Mannose on Amazon. Which ones do you take? It mentions "natural sugars". GP says I am borderline Diabetes on pred and have to have another test next month so not sure whether these would suit. Any advice please regarding the sugar element.

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WebMD says taking mannose may make it harder for diabetics to control their BS levels.

I think it is probably not something to play with at present but maybe revisit later - is the possible difficulty with balancing BS levels balanced out by the reduced UTI incidence. You can help minimise the risk of pre-diabetes when on pred by cutting carbs drastically. It also helps with pred-related weight gain.

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Thanks for info.

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I take Waterfall B Mannose ordered direct from Sweet Cures in York. They give advice on dosage. Mannose is a very simple sugar from pine resin hence the rather high cost. It is supposed to pass straight through and not be absorbed but obviously I defer to PMRPro who knows exactly how these things work in relation to polymyalgia. I am lucky so far in that my blood sugar is normal and I hate sugar fortunately!

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EEhh - no, I don't know exactly how mannose works, I was just reading a review article on it but it is too late at night! Will have another look over the weekend!

I'd encourage anyone with no BS problems to try it for UTIs but it CAN affect glucose metabolism so if that is a flagged problem I'd leave it for now until that aspect is cleared up.

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When I get full blown symptoms of cystitis I have taken the cheep version Cystocalm and it isn't very nice to drink but it does sort out the burning. If you mix a little cranberry juice with the powder it isn't so bad. Also I drink lots of water.

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Thanks for your reply. I do not get burning or pain just horrid smelling urine!

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I was given Amoxiclev after I was found to be resistent to Nitrofurantoin.

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Thanks for your reply. I think this is penicillin based and I am allergic to that. I see GP tomorrow so might hopefully get more information on treatments.

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Above all - you need a urine culture to identify the bug and which antibiotic kills it. That is an integral part of the test and why it takes 3 days - they culture the bug and show it various abx to see which will work best. You can take all the antibiotics you like for the next 5 years - if the bug isn't going to be killed it is a waste of time, abx and money!

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Just returned from docs. Urine infection has gone with 3 day course but she is sending another sample away to check. (I strongly suspect the infection will soon be back). I have to phone on Thursday so they obviously are not doing the 3-day test you mention.

I requested details of what strain I had and she had a look and at least 3 of them have been e-coli - she didn't check them all as limited time! We are now one GP down at the surgery so it is more hectic than ever.

She has arranged a scan to see if my bladder is emptying and is referring me to a urologist for further tests. I took a list of questions and she was co-operative but mentioned depending what they find I might have to have long term antibiotics!

Thanks everyone for all your input

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Or not - because they may find it is a physical problem. But antibiotic courses ad infinitum isn't the answer.

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