NHS 111 - UTI and referral to Covid team because I probably have a temperature...

[Brushwork]

Waiting for call back.

Is this life on Tocilizumab or am I unlucky?

[Hessie5]

Hi Brushwork - sorry to hear how you are feeling and hope you are feeling better soon. All the best - Hessie - x

[Brushwork in reply to Hessie5]

Saw a Dr and was given antibiotics, really tired and a bit sore, but ok thanks.

[sylvi in reply to Brushwork]

I hope the antibiotics soon kick in and you will soon start to feel brighter..xxx

[Pippy25]

Hope the antibiotics do the trick and you feel better soon x

[Marionfromhappydays]

Hope you feel better soon and this is just a blip x

[springcross]

I'm sorry to hear you're not feeling well Brushwork, you're going through it a bit lately. I hope when the antibiotics have done their work that you're feeling much better and that you can begin to feel the benefit of your new med. xx

[helixhelix]

The research says that infections more likely in first couple of months on a biologic, so could be. But do you get UTI’s? As if so could just be unlucky timing...

Have another glass of cranberry juice, flush those little nasties out....

[Brushwork in reply to helixhelix]

Only ever had one before and that was years ago. Yes, flushing away, thanks x

[allanah]

Well that's weird, I've been on TCZ 3 years now and it's been amazing. Just had a temp and a uti, but tested negative for covid. Yes got antibiotics and im just accepting that every now and then people get infections. I've not been plagued with infections luckily since starting TCZ. Good luck

[lynndemedicis in reply to allanah]

I get a UTI every quarter or so when taking MTX and 5mg of prednisone. It's difficult to navigate everything.

[Brushwork in reply to allanah]

Thanks Allanah, That is reassuring actually. Hopefully, this is a one off for me, I am not prone to infections.

[nomoreheels]

I think with biologics in general you're that much more likely to infections, UTI's & pneumonia being the more common ones. If you're drinking cranberry juice I’d advise you to be wary of those readily available pre-made brands (or home brand) in supermarkets. Anything with 'drink' on the label will be lowest in the berries, but high in sugar. No added sugar ones are better but still not high in the important ingredient. One brand which says ‘whole berry' has even fewer actual cranberries than their normal brand! Squashes even fewer. You might know we've tested many, my h had a UTI & thought it might be helpful.

[medway-lady]

I hope your feeling better soon and my Nephrologist told me to try d mannose its from Cranberries and available from Holland and Barrett he said as I get a lot of UTI's that was worth a try. I did discover through him though, that the antibiotic prescribed by GP did not kill this particular bug and he prescribed one that would. So thats why the bug has gone on and on. This was 3 weeks ago and now feeling a lot better.

[rabbits65 in reply to medway-lady]

Hello medway-ladyI just wanted to mention that I get a lot of UTI s. They are a nuisance to say the least and I’ve lost count of antibiotics I’ve had. Trimethoprim mainly. Anyway I’ve asked to be referred to urology dept. I also take cranberry tablets . I’ve also taken many times those powders you dissolve in glasses of water. But they seem never ending the infections I get and worrying . I am 68 years .

[medway-lady in reply to rabbits65]

I'm 67 and Monouril is the powder, it was the Nephrologist who spoke to Urology and changed med to Ethramyocine (something like that) it has worked and now on low dose for 2 months. I also drink at least 3 pints of water a day plus tea etc. The microbiologist also got involved as I've low kidney function so things get more difficult. I'm willing to try anything to prevent more UTI's and yes they are such a nuisance. I'd suggest finding out what bug it is and asking what does the microbiologist think ? Can't do any harm just to can it ? And look up Double Voiding that did make a difference to me. Again Nephrologist told me about it. Easier to talk to the consultant than local GP. lol xx

[rabbits65 in reply to medway-lady]

Thank you for your good advice

[allanah in reply to medway-lady]

My daughter gets a lot of utis and was told to buy d mannose. It didnt work for her but hers is chronic, but well worth a try .

[medway-lady in reply to allanah]

Try Double voiding it did improve things a bit.

[allanah in reply to medway-lady]

Again? Double voiding

[medway-lady in reply to allanah]

Basically it waiting after finishing a pee and making sure the bladder is completely void. It does sound odd but just wait a minute especially at night and you'll see what it is. Should be on NHS website my GP told me to give it a try.

[allanah in reply to medway-lady]

Ah ok thanks 😍😍

[HanaleiBa]

In my experience in the US, they generally do Toci once every 2 weeks. In the UK they wanted me to increase it to once a week and were laughing at how “cheap” my US rheumie was. Well...I’d been stable at once every two weeks, but foolishly increased it as advised here and....UTIs! Sharing in case this is an issue of dosage and you may want go adjust it. Ask your rheumie obviously. Everyone is different. Hang in there and good luck! I’ve loved Toci otherwise. But, unlike Enbrel that felt a bit gentler (but also didn’t give me full remission as Toci does), the dose for Toci “can be played with a bit” (the words of both my US and UK rheumie’s, not mine.)

[Brushwork in reply to HanaleiBa]

That is interesting because when I was researching Toci, I read that for those under 100kg the dose should be 9ml or 162mg every 2 weeks for RA. I guessed that would be me (54kg) and was a bit surprised when I was given that dose weekly. I will see how it goes. I am definitely doing ok otherwise.Thank you 🙏

[Song29]

If you suffer from UTI’s take a look at D-Mannose. My constant agreed to me taking them to keep UTI at bay. I’m on MTX. They are available from H&B, Amazon. Don’t quote me on this but I think it’s a type of sugar/glucose and bacteria in your bladder clings to it and then is removed when you empty your bladder. Been an absolute life saver for me. I first discovered them when my daughter was getting lots of uti’s and the urologist recommended them. Always check with your GP or Specialist before taking anything to be on the safe side.

[Brushwork in reply to Song29]

Thank you. I will keep it in mind. I had only ever had a UTI once before and it was about 10 years, so definitely not usual for me till now, and hopefully not an ongoing problem... time will tell

[spzgirl51]

Hello Brushwork ,I eat fresh blueberries or drink blueberry juice to calm irritated bladder pain.

[grumpygirl]

Hi just thought I would mention that recurrent UTI's in ladies who are post menopausal can be triggered by vaginal dryness or atrophy. In fact any urge to pee that becomes worse than it should can be caused or contributed to by this. If this is the problem the solution is just to use something like vagifem or ovestin (prescribed by your Dr) or if you are unable to use these than vaginal moisturisers like Replens (available over the counter) can provide some relief.

[Brushwork in reply to grumpygirl]

Now that is interesting, I have Sjogrens too and every orifice imaginable, every part that should produce lubricant, is affected. I will speak with GP. Thank you

[grumpygirl in reply to Brushwork]

you're very welcome. I have possible Sjogrens and am currently seeing both a urologist and gynae as I have had UTI symptoms, sometimes badly since November but no bacterial infection. Mannose D, Cranberry Juice, Vagifem and Replens have all really helped so that I am getting some normal days. I also no longer drink Caffeine or Fizzy Drinks. I hope you improve, I know how miserable it can be!

[catcat01]

Hope you feel better soon xx