Urinary Tract Infection: I think I am starting a... - PMRGCAuk

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Urinary Tract Infection

Miserere profile image
60 Replies

I think I am starting a UTI - usual symptoms - burning, cloudy urine etc. Only just started. Is this more common with PMR? I am taking large doses of vitamin C and I have some D-Mannose. Any other recommendations? I wonder if this is the reason for a flare of PMR symptoms as well - have been stiff and so tired.

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Miserere profile image
Miserere
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PMRpro profile image
PMRproAmbassador

More common with pred probably. I had irritable bladder with PMR but yours sounds more like an infection.

Get in there quickly with the D-mannose and you might get away with it. But if it doesn't work - abx may well be needed,

Miserere profile image
Miserere in reply toPMRpro

Thank you - does abx mean antibiotics? I assume so. I have taken 3 x 1000mg D-mannose tablets - it says repeat in 2-3 hours. I was hoping to be asleep by then but I certainly have urinary urgency. Blast! Thanks again - nothing's simple it seems.

Jackoh profile image
Jackoh in reply toMiserere

I find the powder D mannose easier to up and give frequently. A couple of times , really dosing throughout the day has prevented the UTI taking hold. I usually take 1 teaspoon of D mannose too every night last thing to prevent UTIs. It seems to work. 💐

PMRpro profile image
PMRproAmbassador in reply toMiserere

It does. Sorry!

YuliK profile image
YuliK in reply toPMRpro

Your completely right PMRpro…Certainly sounds like an infection.

Yulik 🌷🌷🌷

Pr0jection profile image
Pr0jection

I had the same problem in the early days of pred, but started to drink cranberry juice and so far so good. Recommended by GP too.

Miserere profile image
Miserere in reply toPr0jection

Thank you - I wonder if I can get cranberry tablets or something - I know I was prediabetic but got my numbers back to normal on the low carb diet. Don't want to push them up again with sweetened juice.

Pr0jection profile image
Pr0jection in reply toMiserere

You can get the cranberry tablets from pharmacies here in Cyprus. However, I wasn't happy with the taste so I stick to sugar free cranberry juice lollies! Really nice on a hot day.

YuliK profile image
YuliK in reply toPr0jection

Projection good morning.

There is a lot of sugar in the cranberry juice. Do you drink the sugar free type.

I find that sugar feeds the UTI.

Yulik 🌷

Miserere profile image
Miserere in reply toYuliK

Ah - I shall look for the sugar-free - thanks Yulik

Pr0jection profile image
Pr0jection in reply toYuliK

Definitely sugar free....

Daffodilia profile image
Daffodilia

Have you tried cranberry juice ? - worked for my Mum and husband

Miserere profile image
Miserere in reply toDaffodilia

I haven't, Daffodilia, but as I was pre-diabetic not sure whether it's a good idea as I seem to think the juice is quite sweet. I will get some in any case.

Daffodilia profile image
Daffodilia in reply toMiserere

You need an unsweetened one for UTI - can buy on line but supermarket version is cheaper

Miserere profile image
Miserere in reply toDaffodilia

I've just been to Waitrose and they have it so I've bought 3 cartons. Feeling completely out of it now, muzzy head, weak legs, stiff neck - not sure what is what. I'll have some juice and maybe lie down.

Daffodilia profile image
Daffodilia in reply toMiserere

It’s hot - getting to us all - pace yourself

PMRpro profile image
PMRproAmbassador in reply toMiserere

Not worth it if you are using D-mannose - it is the D-mannose in cranberry juice that does the job and you get lots more in the capsules than drinking gallons of high calorie juice. D-mannose can have an effect on diabetes but you know what you are getting.

clinicaladvisor.com/home/fe...

Miserere profile image
Miserere in reply toPMRpro

Ah, thanks for that PMRpro - now I have both so hope for the best. I can't seem to get anything together this morning, including my brain which is foggy and head aching as well as stiff neck. Had a lot of cramp in the legs last night as well. Not sure what is going on. I can't decide whether the Pred is dealing with the PMR either. Just want to go to sleep.

PMRpro profile image
PMRproAmbassador in reply toMiserere

Sure it isn't Covid? But if it really is an infection that can do all that - and you need to speak to a doctor because you may need abx

Miserere profile image
Miserere in reply toPMRpro

I really don't think it is covid. They say a GP will ring this afternoon - off to bed in the meantime.

Miserere profile image
Miserere in reply toPMRpro

I have some abx and have given in a sample. The surgery is running over an hour behind so I decided it would be best to come home and take the tablet and go to bed.

Daffodilia profile image
Daffodilia in reply toMiserere

Husband had tabs too - seemed to work

YuliK profile image
YuliK

Miserere good morning

Oh dear, as a frequent sufferer of UTIs I can sympathise totally with you.

I’ve just finished a ten day course of antibiotics and I have a feeling it’s still not cleared up.

I’ve asked my doctor for another Urine test. It’s most important to keep on top of the UTI as it can lead to many complications if we just try and ignore it or do a *temporary repair* job with home made remedies…

My advise, as Ask your GP for a urine test before anything else.

Drink lots and lots of water.

Yulik 🌷

Miserere profile image
Miserere in reply toYuliK

Thank you, Ulik - I shall do that. Not so bad this morning but I can feel stinging on the left hand side. Everything seems to come at once - a flare, a UTI and now an eye infection on top - wonderful. Thanks for your response.

yewtree profile image
yewtree in reply toMiserere

I can sympathise so much with you - it is a miserable feeling. I used to get urine infections every 6 weeks or so for a long time and ended up on antibiotics regularly. I've managed to go now for 35 weeks without an infection. My advice is to concentrate on Mannose to treat and maintain a UTI free life. It is expensive but if directions are followed can cure an infection. Also use their probiotics. I also follow the advice of Bladder Health UK's diet book in trying to avoid acid foods as much as possible (boring but works). Also take Ovestin to keep vagina in good condition (prescription only) and Yes VM vaginal moisturiser, If you suspect discomfort is due to too much acid in the diet a pinch of bicarb of soda on food can help to restore the balance. Lastly drinking plenty of water daily important. Hope this helps.

Miserere profile image
Miserere in reply toyewtree

Thanks so much Yewtree. I am so glad all you ladies are here. I have just spoken to a doctor so have an appointment at 4pm just to check everything but if Mannose will do the job that is fine. At least they will do a urine check to make sure. Now not sure if I have a PMR flare or whether it is this infection - she said stay on the higher dose of Pred until it subsides. Is the probiotic a fructo-oligosacharide?

yewtree profile image
yewtree in reply toMiserere

Hello Miserere. Even if you have a urine infection the Mannose can get rid of it if you have a high dose for a few days - I know because I have done it!

Miserere profile image
Miserere in reply toyewtree

Many thanks, Yewtree. Just got up to go back to bed - very heavy head and sore neck. I shall take more Mannose now.

yewtree profile image
yewtree in reply toyewtree

What did the GP say about the sore neck and heavy head? Doesn't sound anything to do with a urine infection.

Miserere profile image
Miserere in reply toyewtree

In the end I did not see a GP. I just did the urine sample and because I was feeling so tired etc. and the surgery (with just one GP working) was running over an hour late I decided I would pick up the antibiotics and get back to bed. However, although still tired and no energy this morning I am less stiff and more with it after two abx. I am sure that the mannose stopped the infection from progressing and this should clear it.

Karenjaninaz profile image
Karenjaninaz in reply toyewtree

I think the Ovestin makes the most difference. I use something similar: estriol USP . I’m 80 and I’ve only had one uti I can remember, maybe 30+ years ago. Ladies’ urethra is short and, with the climacteric, becomes shorter and dryer. This enables bacteria to migrate up into the bladder- causing havoc. Using something like Ovestin or Estriol(allowed for breast cancer survivors) restores integrity to that area.

Miserere profile image
Miserere in reply toKarenjaninaz

Thank you, Karenjaninaz. Are these prescription only?

Karenjaninaz profile image
Karenjaninaz in reply toMiserere

I buy, in the US online, estriol cream from IHerb.com. I apply once a week. There are also prescription creams formulated with estriol not estrogen. Estriol does not enter the breasts like estrogen. I am a survivor.

The formulated creams need an Rx.

Miserere profile image
Miserere in reply toKarenjaninaz

You certainly are! Thank you.

Whittlesey profile image
Whittlesey in reply toMiserere

Yes!

Magictherabbit profile image
Magictherabbit

I can sympathise with any one who has a lot of UTIs . From March until June I had one after the other and numerous courses of antibiotics….I’d finish the course and within a few days I would have another infection. I thought it might be due to pred but several gps said it probably wasn’t and asked me to try Vagifem pessaries . They contain estrogen which you loose after the menopause .

Since starting to use them 6 weeks ago I haven’t had any problems with urine infections so far.

Nothing worse than a UTI - years ago, after having several of the cursed things and always being put on an antibiotic (unfortunately it was Cipro, but that's a tale for another time) - I finally called a naturopath - if memory serves it was because it was my doctor's day off = and she told me to take grapefruit seed extract: 4 tabs the first hour - and 2 after two hours for two more turns. Worked a charm and I've used that and the Mannose powder ever since. Apparently grapefruit seed extract has antibiotic properties. Hope it helps!

PMRpro profile image
PMRproAmbassador in reply to

Hmmm - cipro is a swear word in my house too! And they are told not to use it for banal infections ...

in reply toPMRpro

It's more than a swear word in our house - but at the time I was offered it, they weren't told about its dangers until recently. It now has a black box warning and is only used if nothing else works - at least in the states. I was prescribed it during the anthrax scare. Not that anyone thought I'd been poisoned - just that it was the "new, improved drug du'jour." I feel fairly certain that it's why I now have "idiopathic sock and glove neuropathy" but I could never begin to prove it - and I'm pretty sure idiopathic should stand for "the pathetic idiots don't know the cause". . . . but I digress. All that aside, an ER doctor just a few years ago told me to get some to have on hand in case a puncture wound went septic. I just tossed the script out.

PMRpro profile image
PMRproAmbassador in reply to

It was 6 or 7 years ago I was given it for a UTI while already on methyl pred. Unusually I didn't check - and developed achilles tendinitis. I picked it up straight away and stopped but still spent nearly 9 months with crutches to hand when I went out, just in case. And it hasn't really gone away, happens now and again. GP said "I've heard about it but never seen it ..." "You have now ..."

in reply toPMRpro

I got it about 15 years ago and they didn't really know then - or at least the docs didn't (the drug companies may well have know). Made me feel terrible - which should've been a clue but I had no idea what the clue was about. Sigh. My faith in the medical profession hasn't exactly been through the roof since then.

in reply toPMRpro

I really feel for you - that 'never knowing how you'll go' is the toughest thing to deal with.

Miserere profile image
Miserere in reply to

Love your description of idiopathic - and agree!

Miserere profile image
Miserere in reply to

Oh, brilliant - I shall keep that in mind and get some when I am next out. Thank you.

SNOWYROSE profile image
SNOWYROSE in reply to

Hello ShadyLady, I would like to try the Grapefruit seed extract. I am already taking d Mannose which just keeps the constant UTI at bay. But I would like to get rid of it obviously. In the health shop they only had Grape Seed extract. Did you mean that, or is it definatlty Grapefruit Seed Extract? If so i will keep lookin.g. I am on 3.5 pred, and 25mg Methotrexate.thanks

in reply toSNOWYROSE

Hi Snowyrose - yes, it's definitely Grapefruit Seed Extract - in the states we can buy it on Amazon - either the liquid (which I understand is quite bitter) or the capsules or tablets. Good luck with it - hope you can find it!

SNOWYROSE profile image
SNOWYROSE in reply to

Thanks! I have the liquid, but I would like capsules as your suggestion has given the quantities so clearly. So I will keep looking.

in reply toSNOWYROSE

Best of British luck finding the tablets -(my husband's from Yorkshire - so I hear that a lot!). I just checked Amazon.com.uk and they do have them. Best wishes and may your health continue to improve, something we all want!

SNOWYROSE profile image
SNOWYROSE in reply to

Thank you

Rostom profile image
Rostom

I may have a suggestion.... A little background: I had recurrent UTI's for several years necessitating around 20 courses of antibiotics (including ciprofloxacin). The best for me were the three, six-month courses of low-dose antibiotics. These were suggested by my Consultant Gynaecologist (my GP was a little reluctant to prescribe them but did so following the consultant's recommendation). I only had two breakthrough UTI's during this time.

I was not keen to continue to take the low-dose antibiotics ad nauseam and at my next hospital appointment had a long discussion regarding what I could do. My consultant explained that the bug that had embedded itself in my bladder was not the usual suspect, E. coli. If it had been E. coli, the use of D. Mannose could have helped me. If you know which pathogen you are fighting and it is E coli, my consultant thinks it can really help as a prophylactic if used daily - although he counselled me that one would have to buy from a reputable supplier. I guess there are charlatans supplying dubious D. Mannose online. If your pathogen is not E. coli, taking D. Mannose will not help at all.

Incidentally, my consultant does not rate cranberry juice at all and cranberry supplements, just a little. He also surprised me by stating that drinking vast quantities of water at the start of a possible UTI was pretty useless. Although water would be helpful in hydration, once a pathogen has settled into the folds of one's bladder walls, water will not remove it!

I needed something else and it was suggested that I try 'Hiprex', which is methenamine hippurate. This is prescription only in the UK. I have been on a twice-daily dose of this for some 12-15 months now and have been very well on it - not one UTI breakthrough. There was research undertaken which, although not large-scale, found Hiprex to be useful to people such as myself with unusual bugs (I'm afraid that I don't know if it is appropriate for those with E.coli, or not - it may well be). I understand that it is an antiseptic, not an antibiotic.

I now have reasonably complex gynaecological and neurological problems in my pelvis and spine (and take prednisolone for PMR) so am quite complicated but I was thrilled to be given the opportunity of what so far has been a safe and simple solution to the pain and misery of recurrent UTIs.

That's about all I can tell you: it may be worth asking your GP for an up-to-date lab test on your urine sample. If it is positive for E.coli, begin (reputable) D. Mannose and a targeted antibiotic and ask your GP if Hipprex would be appropriate/benefit you.

I wish you well.

Regards

Rostom profile image
Rostom

Me again. I should have added that if you are of a certain age (I see that you are female!), using a pessary (Vagifem) or cream (Ovestin) was recommended by my Gynaecologist for women post menopause. It is a form of HRT (it's an oestrogen) but found to be safe and effective for women with repeated UTIs.

Having tried both, Vagifem is the way to go - very simple and easy to use.

Miserere profile image
Miserere in reply toRostom

Thank you for taking the time to resond so fully, Rostom - I do appreciate it. Gosh, what a lot you have to deal with. I shall wait and see what the bug is that caused the problem before I do anything, although I do feel that the Mannose helped ease things, so perhaps it is E coli. I shall make a note of Vagifem for future reference and, indeed, refer back to your response for other things should this become recurrent. I was also surprised about not needing to drink lots of water at the start of a UTI - interesting to note. Thank you, again.

OutdoorsyGal profile image
OutdoorsyGal

Two things to consider. Are you post-menopausal? Tissue changes can lead to increased UTISs. And are you sexually active? Intercourse can move E. coli into your urethra, resulting in a UTI.My urologist prescribed Bactrim (Sulfamethoxazole) to be taken - 1 tablet only - right after sex to prevent UTIs. Works like a charm!

Good luck!

Miserere profile image
Miserere

The mystery goes on ...

Because I still have weak muscles, tiredness, a head that moves two paces behind me a more rapid pulse than usual and no energy at all plus eyes that seem to be constantly watering I really don't know what to think. It feels indicative of some sort of infection so I contacted the surgery again who told me that the sample I left contained no infection! I could hardly believe it as all the signs were there ... unless the D-Mannose dealt with it very quickly. Even if it did, what is all this? I had the cloudy, whiffy urine and the burning feeling. Bizarre.

As I can't do anything else I shall go and sit in a chair and pretend to read a book. Can't concentrate long enough to read an entire page ...

They are promising rain next week - can't wait.

PMRpro profile image
PMRproAmbassador in reply toMiserere

There are problems with the length of time for which they culture the urine and often it needs longer.

The eyes sound typical of dry eyes - try using artificial tears perhaps. My eyes were awful last week - and a few days with antibiotic drops has made a massive difference

Miserere profile image
Miserere

Thanks, PMRpro - I guess I will just sleep it out.

Miserere profile image
Miserere

Just an update: today I woke up with a clear head!!!! I got up without staggering. I can read without my eyes constantly watering - hell, I can read at all! I haven't fallen asleep ... yet. I feel like a totally different person - phew! There was certainly an infection and it has taken its own time to work its way through my system in a very unpleasant manner.

Many, many thanks to all you ladies who have offered advice and support. I really appreciate it and life would have been much more difficult without it. You really are heroes in my book.

Rostom profile image
Rostom

Apologies, Miserere, for not responding to you sooner.

I am happy to read that you are (suddenly!) feeling better, good news.

I did have a thought regarding the negative result of your recent urine test. As I previously mentioned I had many many dip stick and laboratory urine tests and some 'proved' negative.

On those occasions, I was initially upset as I was sure I had a problem. I then learnt that even the lab tests are notoriously unreliable; I have seen figures of 50% and a medic told me 'up to 70%' are incorrect which if nothing else, made me feel better!

My point is that these tests are not always reliable. If you think you have a UTI but test negative, it may be worth having a conversation with your GP and seeing if they will re-test or start antibiotics regardless. Some will, some won't.

Hope you stay well.

Regards

Miserere profile image
Miserere in reply toRostom

Many thanks, Rostom - I am sure I had a UTI but perhaps the D-Mannose held it at bay. The burning went but all the other symptoms of an infection stayed. Fatigue levels have been high but that is getting better at last. Fingers crossed that is it as I see little point in trips to the GP surgery unless absolutely necessary and, even then, I'm not sure that it does a lot of good.

blueisgreen profile image
blueisgreen

I was tested and it turns out I don't have a UTI. Someone had told me that could be why I was having bladder control problems.

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