water infections

[kingharold11]

I have had a spate of water infections {6} Plus necessary anti biotics which has all left me absolutely drained of any energy I don't know what to do about it any ideas?

[scats]

My last infection I slept for days. I was good for nothing. I'd say rest as much as you can.

[Bethy]

I was the same one UTI after another when my doctor referred me to a Urologist. I now have estrogen treatment twice a week, and so far seems very successful.

[Telian in reply to Bethy]

Estrogen is the answer but I can't have it so 14 months of UTIs plus irritation when no UTI - am going back to Urology after seeing Rheumie, Gynae, Dermy, Vulvodynia and Oncology with each blaming the other, I live in a permanent state of flux. I've even come off my cancer drug, under supervision from Oncology, and no difference, I am truly Estrogen deficient and it is an easy fix for anyone else. As I need the Adcal I've got a half dose I take twice daily and it is better but still there. I'm hoping they'll stretch the urethra again, even though they say it doesn't need it, desperate measures... In the meantime I use Lidocaine to numb and painkillers each and every day. If none of this works I'll have to consider stopping the Adcal for a while and see if there is improvement - in fact I might take just one dose and see if it makes a difference. I am pleased the treatment works for you. It's interesting lots are getting the UTIs but Rheumie say it's not the pred, then what is it, we can't all be wrong. I'm really winding up for my next Rheumie appt... Apologies for ranting but saw you also had the problem and it set me off again, sorry.

[PMRpro Ambassador in reply to Telian]

I told Prof Sarah Mackie about bladder problems and she looked sceptical too - but true to form went back and starting asking patients. And realised that, yes, lots of patients with PMR also have bladder problems. Pred can improve it - mine did improve with higher doses of prednisolone (15mg), got worse with methyl prednisolone and improved again with prednisone. But as you get to lower doses it isn't enough to deal with it and the symptoms return.

My GP offered probiotics for insertion in the vagina - a lot of problems can be because of an upset biome there.

[Telian in reply to Telian]

Forgot to include Urology, am waiting to see them again, they discharged me as had eliminated cancer, had blood in urine, and could go back again if needed, so I am.

[PMRpro Ambassador]

If you are having repeated UTIs you need to be referred for investigation - there are all sorts of causes and ways of improving it.

In the meantime - how about trying a good probiotic? To replace the good bacteria the repeated abx have knocked on the head - together with the bad boys.

[Telian in reply to PMRpro]

Think I'll try that again, used to take it but I can't think for myself anymore with these dam UTIs and chronic irritations in between. Any particular one?

[PMRpro Ambassador in reply to Telian]

A friend swears by VSL#3 - recommended to her by her gastroenterologist after anoperation. It is an expensive one but particularly good he felt.

[Telian in reply to PMRpro]

I've been looking at it, recommends taking for at least 4 weeks so is worth a try whatever the cost. I've decided, rightly or wrongly. not to take my Adcal today, how long would I need to stop taking it to see any benefits? if they are the cause. My dexa scans have always shown above normal levels so am not too worried at this point. Due again next year. Thanx muchly!

[PMRpro Ambassador in reply to Telian]

Difficult to say - it shouldn't leave grit around for long but the irritation will need to calm down if that is what is up. It doesn't take long for me - and as I say for me it only happens when I haven't been drinking as much as usual. So lots of fluids...

[Telian in reply to PMRpro]

It's all trial and error I know, I do try to keep my fluids up, better some days than others, I get OH on my trail when I need to, he fills my mug each time it's empty - I have my water boiled find it 'smoother' to drink.

[Telian in reply to PMRpro]

The Vulvodynia Consultant thinks each time I get a UTI that it is affecting the nerve endings so back to Urology for that as it's internal...

[PMRpro Ambassador in reply to Telian]

Sounds a fair comment - I think urology could try a few things that might help. Has anyone mentioned Sjogren's?

[Telian in reply to PMRpro]

Yes but dismissed it as I have too much lubrication in my mouth, is there a test for that?

[PMRpro Ambassador in reply to Telian]

My mouth is fine - but I have other very dry areas and have had dry eyes since early in PMR. When I discussed it with the gynae doctor and the rheumy they both said sicca syndrome (Sjogren's without the antibodies) was very possible. So from that I assume they don't see lack of saliva as essential.

This article

sjogrens.org/home/about-sjo...

says "almost every patient" so obviously it does happen that people don't have it.

[Telian in reply to PMRpro]

I definitely don't have dry mouth but eyes, mouth, nasal passages and of the course the main subject area of the moment yes, Dermy often says Sicca but Rheumy are 'monitoring' and don't seem phased. To be fair all of the tests I've had they won't necessarily know about until I see them in October.

[PMRpro Ambassador in reply to Telian]

"don't seem phased" - they aren't suffering the effects!!!!

[Telian in reply to PMRpro]

that's what I meant...think we get hardened to them most of the time but sometimes it's not good enough, will get into their ribs next appt....

[Grants148]

My husband was advised to drink cranberry juice, it was supposed to help prevent infection,although that did not always work and he was prescribed antibiotics when he he did have an infection. He was referred to a specialist and he found that the infections were caused by a narrowing of the Uretha.l do know that the infections made him feel really ill,especially when given the wrong antibiotics. I hope that you will soon feel better,the antibiotics have side effects and it is no wonder that you feel very tired.

[PMRpro Ambassador in reply to Grants148]

Yup - snap. Stretching it gave me 10 years freedom from UTIs. Then another stretch and another 10 years of peace. Bit nippy sweeties at the time - but oh so worth it!

[Telian in reply to PMRpro]

It worked for me 10 years ago but they say it doesn't need it again, do you think they'll do it If I ask?

[SheffieldJane]

All I can add is that urinary irritation for me ( without infection) was caused by Adcal and cured by stopping it, which worries me because we need it. The antibiotics do leave you wiped out. Try to replace good bacteria with live yoghurts, fermented products and I found a 20 calorie fizzy water drink called Karma wellness drink, that claims to be full of live bacteria from Japanese rivers - mmmmm!

[PMRpro Ambassador in reply to SheffieldJane]

The local version of adcal did it for me - but only if I wasn't drinking enough, even just for a day.

"claims to be full of live bacteria from Japanese rivers" - all well and good, but the bacteria in our local rivers don't strike me as the sort to sort out one's gut...

[piglette in reply to PMRpro]

Our local river has a lot of variety of bacteria though including the possibility of Weil’s disease!

[PMRpro Ambassador in reply to piglette]

Nice!!!!!

Where on earth do you live - the NHS claims it is rare in the UK!

[piglette in reply to PMRpro]

I think some sporty guy died recently from Weil’s round here. Judging by the rats around I am not surprised. How are they stopping Weils’s? Discouraging people swimming in rivers?

[SheffieldJane in reply to SheffieldJane]

Well I think they’d kind of washed it. My son and I drank a bottle each only 20 calories. It was supposed to be a dairy free bro-biotic. We sat in the sun waiting to die, but just ended up feeling a bit spaced out. Trending now - they wish!

[kingharold11]

Hi everyone The adcal thing seems to be working plus my lovely doctor suggested I stop using soap particularly in that area and it seems to be working dont want to shout it too loud as the cosmos is listening Wendy

[Valnvaughan]

Waterfall D-Mannose worked for me after 3 yrs of constant UTIs.......none for last 3 years!