Have people managed to get advanced p... - Multiple System A...

Multiple System Atrophy Trust

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Have people managed to get advanced prescriptions?

Blubetty profile image
8 Replies

Hi everyone. Looking for some advice please. My Mum has been in and out of hospital over the past year with UTI's. I'm sure many would agree that hospital is really not the best place for someone with MSA as I find they really have no idea what care my Mum requires. It would be so much easier to nip these infections in the bud before hospital was required. I'm sure I have read about getting antibiotics in advance so they can be administered as soon as the signs start appearing (my Mum's carers are extremely good at knowing when she's 'not right'). Has anyone got this arranged with their doctor? How did you go about it? Many thanks

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Blubetty profile image
Blubetty
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8 Replies
Yanno profile image
Yanno

Hello BettyWe have just that arrangement with our doctors. We have antibiotics on repeat prescription and ensure we have a supply at home all the time.

As soon as we believe Jackie has an infection (see below) she takes the antibiotic that we have used most often AFTER getting a urine sample that we take to the doctors. If the sample is reported as being resistant to the first antibiotic we immediately switch to the second.

We also test Jackie every week with a urine dip stick (available from Amazon). As Jax starts off being asymptomatic, this catches the infection early on.

More recently our doctor has moved Jax on to a prophylactic course of antibiotics and she takes one tablet each evening. Despite this we have been given another antibiotic to keep in reserve in case a resistant strain occurs.

Luckily the prophylactic had completely stopped Jackie’s UTI’s.

Good luck, Take care, Ian

Blubetty profile image
Blubetty in reply to Yanno

Thanks so much Yanno, this is just what I needed. If I can go armed with a bit of knowledge it will be so much easier to get this arranged. So difficult to talk to a doctor at the moment but if it could possibly stop the infections hitting so often that would be amazing!

Courgettegrower profile image
Courgettegrower

Like Ian, we have now got a prophylactic antibiotic and it seems to be working well. However my husband is now being considered for supra pubic version as it is considered better .

Blubetty profile image
Blubetty

Thank you, unfortunately my mum spent less than 24 hours out of hospital before being re-admitted. If I get the chance to try this out it would be great. Not feeling very optimistic at the moment 😕

Kilmain profile image
Kilmain in reply to Blubetty

Hi Betty, if you talk to her hospital doctor while she is in hospital they could start her on a prophylactic antibiotic and write to her GP to continue prescribing once she is home. Another suggestion is to ask your MSA nurse to liaise with her GP. Hope you get the help you need.

Blubetty profile image
Blubetty in reply to Kilmain

Thanks for this. We also have a prospect nurse involved with Mum's care so I may get her help with this. Let's hope it makes a difference

Primitivepotter profile image
Primitivepotter

Hi Blubetty, Like Yano we have finally managed to get my husband onto prophylactic course of antibiotics and the difference in him is marked…before he was either on large dose antibiotics and then immediately going down hill again. Go for it

Blubetty profile image
Blubetty in reply to Primitivepotter

Thanks, I think half the problem is because of Mum's age (80) it seems they almost ignore the MSA and treat her for being 'old'. So frustrating

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