Newly diagnosed husband and now Donepezil

Lesley22

Registered User
Aug 1, 2023
10
0
Hi all, my 69 year old husband was diagnosed end of may and today had been given Donepezil to start on 5m. I feel a little unsure of any real benefits versus side effects, so seeking some views on this please.
Thank you in advance
Lesley
 

SeaSwallow

Volunteer Moderator
Oct 28, 2019
6,011
0
Hello @Lesley22 and welcome to Talking Point. I am sorry to read of your husbands diagnosis at such a young age. I don’t have any experience of Donepezil but I hope that someone will come along who can advise you.
 

Chizz

Registered User
Jan 10, 2023
3,614
0
Kent
Hi @Lesley22
Everybody's personal chemistry is different.
My OH has Alz's and been on Donepezil 10mg about 4+ yrs now. Maybe she was lucky (?) but no noticeable side effects, I believe it did help slow down the decline, but hard to know to what degree.
If your OH has noticeable side effects, speak GP soonest, but 5mg dosage is v small.
Best wishes
 

Lawson58

Registered User
Aug 1, 2014
4,412
0
Victoria, Australia
My husband seemed to calm down a lot while on donepezil. However, he had a few side effects, mainly tummy when he went on to the higher dose. The consultant switched him over to another drug called rivastigimine which was also helpful. So donepezil is not the only option if it doesn’t suit.
 

Lesley22

Registered User
Aug 1, 2023
10
0
Hi @Lesley22
Everybody's personal chemistry is different.
My OH has Alz's and been on Donepezil 10mg about 4+ yrs now. Maybe she was lucky (?) but no noticeable side effects, I believe it did help slow down the decline, but hard to know to what degree.
If your OH has noticeable side effects, speak GP soonest, but 5mg dosage is v small.
Best wishes
Hi Chizz
That is really useful to know so thank you
 

Lesley22

Registered User
Aug 1, 2023
10
0
My husband seemed to calm down a lot while on donepezil. However, he had a few side effects, mainly tummy when he went on to the higher dose. The consultant switched him over to another drug called rivastigimine which was also helpful. So donepezil is not the only option if it doesn’t suit.
Ok thanks, the problem right now is that he is suffering from a bout of diarrhea, which I think is anxiety related as never had before, so don't feel he can even start them. Will have to wait until that clears I guess the try the 5mg
Such a massive learning curve
 

CAL Y

Registered User
Jul 17, 2021
636
0
@Lesley22 . I’m afraid that I have to report the opposite to the previous posts.
My husband was ok on 5mg but when it was increased to 10mg, this kind gentle man turned aggressive and one night he punched and kicked me out of bed and I had to escape to the car and lock myself in the car until the police came.
Due to the difficulty with getting GP appointments, I took it upon myself to stop the Donezepil and he then returned to the person he was before.
 

extoyboy

Registered User
Oct 2, 2021
65
0
My wife started on 5mg shortly after her formal diagnosis and she felt a few side effects for the first week or so (nausea, if memory serves me) but eventually went up to 10mg and she's been on that dosage for a year now and takes it every morning.

It had a profoundly positive effect on her when she started taking it and it seemed to rewind her to how she'd been 6 months previously. As a result the issues we'd been experiencing stopped and (touch wood) haven't returned yet. Pre-donepezil she was convinced she saw people and things that weren't there and she was often convinced that she wasn't at home and became aggressive and upset about it. She also often believed that there were two of me in the house (Jekyll and Hyde I think...). She still gets a little confused about going somewhere else to sleep (she's in a hospital bed downstairs) but once I explain she's at home in bed she settles so it's definitely been a good thing for her.

Her late mother also had donepezil in the years before she passed away and the family reported that it had been helpful for her too.
 

Lesley22

Registered User
Aug 1, 2023
10
0
Thank you so much, really encouraging, I notice she takes it in the morning whereas our nurse said evening. We will have to monitor that I guess and see what works best. Wishing you all the best
Lesley
 

Lesley22

Registered User
Aug 1, 2023
10
0
@Lesley22 . I’m afraid that I have to report the opposite to the previous posts.
My husband was ok on 5mg but when it was increased to 10mg, this kind gentle man turned aggressive and one night he punched and kicked me out of bed and I had to escape to the car and lock myself in the car until the police came.
Due to the difficulty with getting GP appointments, I took it upon myself to stop the Donezepil and he then returned to the person he was before.
Wow ok, that must have been very scary. I have been told there are alternatives if not suitable so maybe you could try an alternative? I am assuming it would be unusual for that kind of reaction, but this is all new to me. Take care and good wishes
 

CAL Y

Registered User
Jul 17, 2021
636
0
Wow ok, that must have been very scary. I have been told there are alternatives if not suitable so maybe you could try an alternative? I am assuming it would be unusual for that kind of reaction, but this is all new to me. Take care and good wishes
My husband is no longer with us but thank you.
I have seen many posts on TP where people with dementia became aggressive with Donepezil so it isnt a one off case.
Just something “else” to look out for.
Good wishes to you too.
 

Dunroamin

Registered User
May 5, 2019
433
0
UK
I ha ve been prescribed 10mgs for over 4 years now Am convinced it is slowing down the inevitable.
 

SMBeach

Registered User
Apr 19, 2020
305
0
My dad is on 10mg donzepil but I honestly can’t remember exactly what it’s for, although I do know it’s to treat the Alzheimer’s. He started on 5 mg I think. No side effects that I know off.
 

BeeBeeDee

Registered User
Apr 19, 2023
88
0
My husband is 70 and was diagnosed and put on 5 mg for 4 weeks and then went to 10 mg a few days ago. He has diarhorrea sporadically which I assume is a side effect. The Nurse is due to come to our house tomorrow to discuss his medication.
I did think last week that they seem to be calming him a bit but that lasted about 3 days and I can't say I have noticed any improvement with anything although I think it takes quite a while before it does any good. A Dementia nurse I know did say to me dont expect miracles from it, it is more that it will stop him becoming agitated by things.
 

Bex82

New member
Aug 13, 2023
2
0
Thank you so much, really encouraging, I notice she takes it in the morning whereas our nurse said evening. We will have to monitor that I guess and see what works best. Wishing you all the best
Lesley
I did think that myself. My mum's memory doctor and the prescription said 7pm. Although it has confused my mum so much as she takes her other tablets at 6pm so for the sake of an hour we though it would be OK. I'm sure every patient is different so if you have been told evening, then stick to that.
 

mojogirl

Registered User
Jan 6, 2022
31
0
Hello @Lesley22 and welcome to Talking Point. I am sorry to read of your husbands diagnosis at such a young age. I don’t have any experience of Donepezil but I hope that someone will come along who can advise you.
hi seaswallow

i lost my husband of 43 years august 22...he was also subscribed donepezil...i was told it was good for early dementia....and may slow the disease down...his doc prescribed this...but obviously she was unaware that he was in the mid stages....it made him very very agitated and he couldn't sleep....so stopped it after a week..but maybe for your hubby it may work??? so so sorry i know how hard this is...feel free to reach out...a lot of great folks here
 

update2020

Registered User
Jan 2, 2020
333
0
As you have seen everyone’s experiences are different . As were ours. In our experience Memantine had worse side effects (agitation, aggression) than Donepelzil though after four years one professional did say that my husband’s agitation ‘might’ be worsened by the Donepezil too. What I never researched (but would now) is what would happen if he took nothing. He was around dozen years younger than your husband so we jumped at the ‘slowing down’ argument but it’s impossible to tell whether it did slow it down. I’m unconvinced.