Reading this message board I know that quite a few people mentioned having emergency antibiotics on hand if they suspected a UTI. My Mum has been in hospital 3 times for a simple UTI, she’s then caught other infections in the hospital which has led to 4-6week stints. She’s then been institutionalised as they don’t let them walk around much and we have an uphill battle getting her more mobile before the next UTI hits!
We keep having such a delay in getting antibiotics, she reacts to a lot of them too!
I know I have read that people have emergency antibiotics on hand to make sure the infection is fended off quickly but I can’t seem to find what type of antibiotics these are?
Thanks so much
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Purplestar2
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hello there. It’s so annoying that something which can be quickly treated like a UTI ends up being serious due to the slowness of the health system.
For Jackie, I kept testing strips available from Amazon all the time and as soon as I suspected a UTI, we would test. Our doctor gave her a supply of Nitrofuratoin to have at home.
As soon as Jax tested positive through a home dip test we would take a urine sample and immediately start the course of Nitrofuratoin. We took the sample to the doctors for them to send to the lab. If the results came back as Nitrofuratoin resistant doctor would prescribe alternative antibiotic and we would move to that. Our doctors were very aware that UTI’s in MSA are frequent and can quickly get out of hand.
In the end Jax went onto one Nitrofuratoin a day constantly as a prophylactic which stopped UTI’s. Generally the advice is to avoid taking antibiotics all the time however the risk of serious UTI outweighed the downside.
One final point is we learnt that the usual UTI indicators don’t necessarily apply with MSA - particularly a raised temperature. As a result if Jax had an ‘off day’ we would immediately test for UTI.
Thank you. That’s what I try to flag to the health team. It may be that it’s her legs that’s infected again (cellulitis caused an open ulcer on the entire bottom right leg). Trying to get the district nurses to do a swob is a nightmare. Often when doctor requests they don’t have one with them!
We have just been to an outpatient appointment at the hospital today, I really feel with complex cases like MSA they should have an outpatient at the hospital where they can do swobs and urine samples and bloods.
Hi like with Ian, I too have a rescue pack of antibiotics here for my husband Phil, they are Ciprofloxacin which I start to give him when i suspect an infection and I have some urine pots to provide a sample for the GP. Lately they have prescribed a stronger one. Coamoxiclav ( not sure if spelt correctly) . Take Care, Shirley
hi there sorry to hear about your mum UTI’s aren’t good for people with MSA. My husband was the same last year had 3 stays in hospital with UTI’s which turned to sepsis. He was on trimethoprim in the hospital. When he came home after the last bout the hospital put him on a low dose of antibiotics for a couple of months. He was recommended to take D-Mannose 180 Capsules by the specialist nurse which can help with you not getting uti’s. I bought them on line (amazon) touch wood he’s been free of them this year. It’s worth a try. Good luck !
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