Persistent UTIs - new hope for management with a ... - PMRGCAuk

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Persistent UTIs - new hope for management with a vaccine development

PMRpro profile image
PMRproAmbassador
13 Replies

Many of us end up with problems with repeated UTIs when on pred and I thought this was likely to be of interest and something to bear in mind to be looked out for. If the UK doesn't consider at least approving it, even if they don't fund it on the NHS, they are nuts. How many of us would happily pay for it ourselves to reduce the UTI burden ...

medscape.com/s/viewarticle/...

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PMRpro
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13 Replies
Greensleeves profile image
Greensleeves

Thanks for this PMRpro , coincidentally in the waiting room now to see urologist.

It’s a continuous problem, so fed up with needing antibiotics, I’d thankfully pay for a preventative vaccine.

PMRpro profile image
PMRproAmbassador in reply toGreensleeves

Me too if I needed it but off-label use is such a minefield, especially in the UK!

Kendrew profile image
Kendrew

I'm pretty sure I caught the tail end of a 'feature' about this on one of the daytime programmes here in the UK. It wasn't that long ago but I remember thinking just how much this would improve things for so many people if it were to be actioned.

Motida profile image
Motida in reply toKendrew

There was an item on BBC Morning Live on 17 April 2024 by Dr Raj. I hope people abroad can see it too and it opens here. If not not google a bit and it should come up.

I am going to ask about the oestrogen because I want something for "urgency and frequency" issues started with PMR, I saw that the two main drugs flagged up earlier do cause UTIs sometimes. Will share anything useful of course.

bbc.co.uk/programmes/p0hr9y8z

Kendrew profile image
Kendrew in reply toMotida

That was it! That's the feature I watched. Thanks.

PMRpro profile image
PMRproAmbassador in reply toMotida

Works here in Italy.

humlies profile image
humlies

Oh how wonderful this would be! I had one blissful month without any symptoms at all, and then it started again. I do take DMannose, as recommended by many of you, which seems to prevent a full scale infection, but the lingering symptoms are no fun.

rosie_jones profile image
rosie_jones

I went through a series of painful UTIs last year, then my lovely GP put me on a vaginal oestrogen pessary. Marvellous - not had one since.

I later saw this article in the Guardian - see theguardian.com/society/202... I cannot tell you the rage I felt when I read the following sentence in the article: A recent NHS England press release on UTI prevention advised women to stay hydrated and wash themselves more, but failed to mention vaginal oestrogen at all, despite aiming warnings at “older adults” and their carers.

PMRpro profile image
PMRproAmbassador in reply torosie_jones

I posted about that a bit back. I agree - if only they at least read these things and OFFERED them. But it is so often up to us to find out some other way and then they get iffy about us taking notice of the media and the internet.

borednow profile image
borednow in reply torosie_jones

I suffered constant UTIs 3 years ago which were "treated" by my then GP with repeat anti-biotics. These had no effect whatsoever and eventually another partner referred me to a specialist. He prescribed vaginal oestrogen. The UTI's disappeared and I have never had another one. Interestingly the specialist I saw said he was going to treat me with "a new kind of treatment".

Leafsong66 profile image
Leafsong66

Thank you so much for this very interesting and promising news.

yewtree profile image
yewtree

I also suffered from a urinary infection every 6 weeks for several years treated by antibiotics. I am on constant prednisolone 5 mg daily for polymyalgia and ocular myasthenia for over 8 years. I decided to try and find a solution and started taking Mannose for treatment of infections and prophylactically (also on ovestin twice a week after initially being on daily). Lastly Bladder Health UK have a bladder friendly diet which they recommend (avoiding irritation to bladder foods - mainly acidic) - very boring! Touch wood I have not had a bladder infection now for 2 and a half years.

PMRpro profile image
PMRproAmbassador in reply toyewtree

Paper published recently claims D-mannose doesn't have a prophylactic effect - really not sure at all that I agree with them. And it certainly will knock a UTI on the head taken quickly enough.

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