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Dementia and Alzheimer's

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Rivastigamine experiences

6 replies

funnelfan · 11/07/2023 17:57

DM was recommended this by the memory clinic doctor. She has query Parkinson’s, query vascular disease, and/or query Lewy Body Dementia. She’s been on co-levodopa which has made a huge positive difference and she’s been ok at home with carer support and weekend visits from me and my sibling. Cognitively slowly declining with difficulty with her words but otherwise happy at home watching telly all day.

doctor recommended rivastigmine to assist in memory and also to damp down any auditory or visual hallucinations. Mums had a couple of instances, eg convinced she heard the front door bell, or saw someone out of the corner of her eye. But these have been rare, plus she has macular degeneration and I understand hallucinations are not uncommon as the brain tries to make sense of the shadows. She knew the person she saw wasn’t real.

She’s been in a starting dose of rivastigsmine for about ten days now and she’s really struggling. Her memory is worse and she’s confused. Worse, she’s aware of these issues and that’s distressing her. My instinct is to stop taking it now, but before we do I wanted to check in whether anyone else has had this experience and whether it’s worth persisting as it gets better once the patient gets used to it. Personally I think 10 days is enough of a good go to say she’s tried it and it doesn’t suit her.

OP posts:
Carpediem15 · 11/07/2023 20:28

My husband has Lewy Body with Parkinsons and no medication has improved anything for him. He had Parkinsons for about 18 months then diagnosed with Lewys body about 15 months ago when the memory clinic did tests. His memory was not good.
He is on Co-Careldopa 25mg/100mg 3 times a day and in the morning has 1.5 mg of Rivastigmine and 3mg in the evening. He was taking a small dose of RV to start with but they have increased it and to be honest (I am not anything medical ) but I don't want him on it as this drug IMO I am the one that lives with him and is making him see people who are not there at least once a day which we never had before RV and he expects me to talk to them and today had to make them a sandwich. I get woken up at least once a night - usually about 4 am to ask what time it is for the man who has gone to the loo and who is downstairs or can we get up and go to Asda. Never had this before RV or maybe it is just the dementia onwards march.

funnelfan · 11/07/2023 20:36

Thanks @Carpediem15 and sorry you're having to cope with this. Since my original post I've had another confused call from mum, so I've told the carers not to give it to her any more and I'll tell the doctor tomorrow to stop prescribing it.

The doctor at the memory clinic did say that "if it didn't suit" we could stop it, so I'm making the call. Mum agrees and says it makes her dizzy too. Not all drugs suit all patients, and currently weighing up the pros/cons of being on it, it's all cons at the moment for her.

OP posts:
Carpediem15 · 11/07/2023 21:17

funnelfan · 11/07/2023 20:36

Thanks @Carpediem15 and sorry you're having to cope with this. Since my original post I've had another confused call from mum, so I've told the carers not to give it to her any more and I'll tell the doctor tomorrow to stop prescribing it.

The doctor at the memory clinic did say that "if it didn't suit" we could stop it, so I'm making the call. Mum agrees and says it makes her dizzy too. Not all drugs suit all patients, and currently weighing up the pros/cons of being on it, it's all cons at the moment for her.

All these drugs just make my husband sleep most of the day and we don't have any kind of conversations any more so when we go to our next Memory Clinic app I am going to ask for an hour appointment instead of 10 mins so please tell me - I am.
Love to Mum x x x and you.💑

Carpediem15 · 11/07/2023 21:18

Sorry - tell them

funnelfan · 16/07/2023 22:20

Just to follow up - after a few days of stopping rivastigmine mum is now back to how she was a couple of weeks ago. This evening she rang me to tell me how much she enjoyed watching the tennis today. At the beginning of the week she had no idea it was even the right time of year for Wimbledon.

OP posts:
Carpediem15 · 17/07/2023 14:01

funnelfan · 16/07/2023 22:20

Just to follow up - after a few days of stopping rivastigmine mum is now back to how she was a couple of weeks ago. This evening she rang me to tell me how much she enjoyed watching the tennis today. At the beginning of the week she had no idea it was even the right time of year for Wimbledon.

That's really good to know. I will have this conversation with the memory clinic when we go back.

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