Could be some positivity for frequent UTI sufferers.

[strawclutching]

Good morning folks. Just entering the fourth year since my GCA diagnosis and having suffered around 17 UTI's in that time (hospitalised with two) along with constant symptoms in between, I've swallowed tons of D-Mannose, cranberry supplements, given up caffeine, artificial sweeteners, used vaginal pessaries, moisturisers, etc.

Just over a week ago, had a telephone appointment with my newish GP during which I requested another referral to Urology to see if any other treatments were available. She went through my notes from my last referral and found a letter from December 2022 recommending that my previous GP prescribe a drug known as Hiprex (Methenamine hippurate). I did not get a copy of this letter, nor did my previous (and pretty useless) GP tell me about it.

Hiprex is not an antibiotic as such, more a urine steriliser, as my GP explained.

So for the last 14 months when my attempts at tapering the Prednisolone have been hampered by these constant UTI infections, not to mention feeling constantly unwell all that time by the symptoms, nausea, being unable to eat, low sodium effects, etc. my previous GP continued to prescribe only 3 days antibiotics, despite documented evidence that 3 days was never long enough for me and I was forced to turn to the internet for more on several occasions. He'd refused to read through my notes saying he hadn't the time, otherwise he might have found that letter!

Cut a long and angry story short, my new GP prescribed Hiprex only 6 days ago and I cannot believe how much better I feel in short time. No burning sensations, sleeping better - fewer toilet disturbances, appetite and energy levels good, back pain has lessened. Having been persuaded by my daughter to move to a single level flat because of severe back pain and general declining health I'm wondering if I now need to move at all - the improvement has been that good.

I realise it has only been a week, and I probably need to wait longer for more evidence of success, but this has improved my outlook enormously. I will go ahead with the move, because If I don't do it now, I know it will need to happen in the next few years, and the flat I've chosen is beautiful.

But instead of looking on it resentfully, I'm seeing it as a new adventure!

[PickyQ]

I am so happy for you- that despite all the long and painful experiences you can now feel so positive. I too have had many UTI's and experienced low sodium effects on the body and my emotional health. I will remember the name of the new drug you mention as we know sneaky UTI happen anytime. Your comments are SO positive and it's good to hear how this has made you feel ready for new challenges. Good Luck with your move- do keep us updated.

[strawclutching in reply to PickyQ]

Hiprex has apparently been around since 1967, yet I never heard of it before. It's not recommended for people with poor kidney function, and there are one or two other side effects but I'm just happy to have been able to change my bed sheets, do the laundry and ironing all in one day (yesterday) which I haven't managed to do in more than a year. I don't think GP's (particularly male ones) realise how debilitating UTI's can be. Often, urine samples sent to the lab are too weak to show sufficient levels of bacteria especially as we're advised to drink tons of water. Consequently, we're back and forwards with more samples days or weeks later hoping for a positive result just to get some antibiotics. And all this while we're feeling so rubbish. Also there are major changes coming supposedly this year to NHS lab testing, making diagnoses more accurate and sensitive. We just need the clinicians to adopt a more sensitive approach too. If the Hiprex does not work for you, but fingers crossed it does, I do hope you get some relief soon. It's such a horrid thing to suffer long term.

[DorsetLady PMRGCAuk volunteer]

Glad you seem to have found the answer -with no thanks to previous GP..

As you say house move would have been somewhen- and as the hard work is finding what you like - why not now. Enjoy it when you moved in .. 🌸

[strawclutching in reply to DorsetLady]

Thanks DorsetLady. Just having lots of necessary clearouts at the moment to move to a smaller place. What a lot of junk we collect then forget about.

[DorsetLady PMRGCAuk volunteer in reply to strawclutching]

Agree on the collecting junk…

When hubby was in the Forces and we moved regularly it didn’t happen..but then we lived in three 3 bedroomed houses before moving to a 2 bedroomed bungalow! That was fun…. 😳

[strawclutching in reply to DorsetLady]

I can imagine! This will be second downsizing and hopefully my last. Can't wait to get settled and put my feet up.

[PMRpro Ambassador]

Good - is it too late to complain about the previous incumbent?

And go for the move - life in a stairless environment is wonderful!!! Do it now while you can, because the process when you are handicapped in any way is so much harder. I'm not ready for the next stage yet but we are looking at preparing for it so that if it were to come sooner than any of us hope we aren't left in a tight corner and it will obviate the need for two moves if it works out as we hope.

[strawclutching in reply to PMRpro]

I would love to complain again about my previous GP. Last time I did so through the practice manager and got nowhere. This was after misdiagnosing my GCA twice over 3 weeks with the same classic symptoms (ended up in A & E), followed by not forwarding my prescription orders of vital meds like Pred and insulins because they knew the pharmacy had a shortage but did nothing about it until it was too late, receptionists emailing my test results to an IT worker by mistake and other stuff. One of the dreadful GP's is now the boss man of the practice.

Yep, can't wait to get rid of my stairs even if it's just for the vacuuming! If I want to test my stair climbing abilities, i can always practice inside the new building if I'm feeling energetic.

I decided (after much resistance for 2 years) to go for the Zoledronic infusion and expecting an appointment to attend soon. Maybe too late, but I have a physio on board now too giving me exercises for bone strength, so as long as there's hope from somewhere I'm taking it.

[HeronNS in reply to strawclutching]

Did you know that even something as simple as 24-form Tai Chi can help with bone density, and has the added benefit of improving sense of balance, which reduces risk of falls!

[strawclutching in reply to HeronNS]

I didn't know about the Tai Chi but I downloaded a book a couple of weeks ago on bone density and balance exercises which I have yet to read. Intriguing, and I will certainly investigate. Thank you Heron.

[HeronNS in reply to strawclutching]

Don't forget to take Vitamin K2 (often very lacking in our modern diet)!

See my story: healthunlocked.com/pmrgcauk...

[strawclutching in reply to HeronNS]

I take that too, and magnesium, zinc, and boron. I've resorted to taking calcium citrate during the night in the hope that it'll absorb better when the Pred is not so active.

[Nagswoman in reply to strawclutching]

Are we at the same GP practice by any chance? Anyway, I will remember Hiprex a week tomorrow when I see urogynaecology about incessant UTIs. Thank you for this and good luck with your move.

[strawclutching in reply to Nagswoman]

😊 Our NHS GP's have a pretty poor reputation particularly since Covid, but what seems to have changed the most is their attitude towards those they're meant to be helping. I'm lucky to have changed GP's successfully and got a good one this time. I hope if you're prescribed Hiprex that it helps you as much as it seems to be helping me.

[SheffieldJane]

Wow! Just wow.

[strawclutching in reply to SheffieldJane]

I know! NHS stories we would never have believed 10 years ago ...😕

[PMRpro Ambassador in reply to strawclutching]

But they happened - there is nothing new under the sun ...

[2Yellowdaffodilsx]

Hi I have hugest sympathy for any suffering UTIs me too! How wonderful to have an option as in Hiprex, however I only have 1 kidney so my way is natural stuff drops from Homeopath & a mix I discovered 1/4 tsp Bicarb Soda with a little fresh lemon juice mix with a litte water. Drink while fizzing. Take once or twice a day. Ive just cured myself again so think I need take this once every day.

Good luck with the Hiprex sincerely hope you get relief. It sure is horrible. Take care .

[strawclutching in reply to 2Yellowdaffodilsx]

Well done on finding your own personal treatment for this debilitating complaint, which none of us Pred users sign up for. So sorry to hear you have only one kidney - you make me feel lucky in comparison. These remedies are always useful to share, and I will make a note of your bicarb and lemon juice mix just in case I need it in the future. Thanks so much Yellowdaffodils and lots of luck for your future health.

[2Yellowdaffodilsx in reply to strawclutching]

You're welcome. I've been v lucky my one kidneys done so well since I was 21! Age 75 now & it's fine. Just have to be careful what I take. Thankyou so much. Take care. Xx

[strawclutching in reply to 2Yellowdaffodilsx]

That's great! You take care too. 😊

[Josie-Anne]

Hi strawclutching,

I totally sympathise with you on this issue, I was constantly in hospital with water and kidney infections and sinetimetime I knew I had a water infection but it didn’t show up in my water sample but I had such a good doctor that he realise the infection wasn’t in the urinary tract it was in the bladder wall itself so he prescribed me Elimron 100mg is the brand name the generic name pentosan polysulfate sodium and since I’ve been taking that I’ve only ever had a few UTI’s. The tablet puts a protective layer around the bladder wall so to stop any infections.

So pleased you got sorted though 😁

[strawclutching in reply to Josie-Anne]

That's brilliant! I've not heard of that medication either but am just making a note of it in my diary. Very useful to know about these things. I wish there were more sympathetic GP's out there taking an interest in women's issues, instead of fobbing us off and saying things like well, it's only a UTI, or taking a negative dipstick as a definite, because if the symptoms are there, then there's definitely a problem. We don't make these things up like men when they have a simple cold and claim to be dying.🙄

[Josie-Anne in reply to strawclutching]

You can look it up too, just type it in your safari search, yes men don’t know they are born, I think if doctors had UTI’s all the time I think they would understand better, not that I’m wishing it on any of them 🤭

[strawclutching in reply to Josie-Anne]

Oo, the times I've wished! ...😂

[Josie-Anne in reply to strawclutching]

😂😂😂😂😂

[powerwalk]

Can i ask are you still taking Hiprex? Is it working for you? Thanks.

[strawclutching in reply to powerwalk]

Hi, Yes I am, and it is! I occasionally get the odd twinge or familiar burning sensation but it doesn't last like before and only if I've overdone things physically. I've noticed lots of old symptoms return, like an annoying neck rash when I'm feeling fatigued possibly because my immune system drops as a result. But this has to be the longest ( three and a bit months) I've gone without a UTI. I'm meant to have a review with the GP after 3 months but will probably have to give them a nudge as usual.

Are you struggling with UTI's yourself?

[powerwalk in reply to strawclutching]

Yes all the time. Another one now. Wonder why its never been suggested to me, ive been to consultant urologist even. Its good you're getting some relief. Thank you for getting back to me.

[strawclutching in reply to powerwalk]

You may have to ask for it, either from your urologist or the GP. Did the urologist prescribe anything else? Mine prescribed solifenacin for bladder spasms which did nothing for me and then I found out that he'd written to my then GP saying that if the UTI's continued I could be prescribed Hyprex. That letter wasn't read to me until 14 months and several UTI's later by my new GP and only after I kept complaining about the same problem. Pestering, jumping up & down even, may get you some results. Good luck.

[powerwalk in reply to strawclutching]

Was on longterm antibiotics at night but then i still got infection. Thank you for info.

[strawclutching in reply to powerwalk]

No problem.

[powerwalk]

Can i ask, are you still taking the Hiprex? Consultant has prescribed it for me after tons of uti's. Im reluctant to be adding more meds but utis antibiotics are so debilitating. Many thanks.

[strawclutching in reply to powerwalk]

Hi Powerwalk, Yes I'm still taking Hiprex and been infection-free since January this year. I still get some niggles if I eat or drink bladder-irritating foods (red wine mostly) but largely it has been a great relief. Also the PMR flares- which always came with the uti's have not recurred either. Touch wood, obviously! In my view it's well worth taking an extra medication. Hope it works for you.

[powerwalk in reply to strawclutching]

Thank you so much for getting back to me, i really appreciate it. Im very bad with meds side effects, so yes maybe ill give them a good try. Keep well.

[strawclutching in reply to powerwalk]

😊Good luck!