Has anyone experienced Donepezil actually make things worse?

Milatoschris

Registered User
May 29, 2018
31
0
After a diagnosis of an 'Alzheiner's like process', My husband was given 5 mg of Donepezil back in June - for the first 4 weeks he was much more confused and agitated than he had been, and had trouble with his waterworks, although this settled a bit after another month or so. When we saw the consultant in October he doubled the dose to 10 mg. We didn't get the prescription until mid november, and within a week he was again confused, agitated and less himself. We have persisted, but in the last month he is definitely more confused; he can drop into a brief 'sleep', even when in conversation, passes water all night urgently and has just developed stiffness in his back and legs. We are both wondering if this is inspite of or because of the increased medication. See consultant in 4 weeks, but am going to check with GP meantime.

Has anyone else encountered this or had dosage reduced or changed drug? Pittheath
 

Milatoschris

Registered User
May 29, 2018
31
0
My Husband had the same symptoms, as you describe. When he finished the first course he himself said no more. He realised he was changing. So the consultant changed his medication please get in touch with your consultant and try something else x
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,444
0
Kent
None of the Alzheimer`s drugs agreed with my husband. The side effects were unbearable so we stopped them.
 

AztecCamera87

Registered User
Mar 12, 2019
204
0
Donepezil just seems to make dad more aggitated and restless. Hes been taking it over a month now. He wakes up during the night shouting or calling out for his wife (she died last year). I think its giving him bad and vivid dreams. Also means my sleep is disturbed as i need to get up and check whats going on.
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
Donepezil just seems to make dad more aggitated and restless. Hes been taking it over a month now.
My Mum tolerated 5mg 'ok' but whenever we tried stepping up to 10 it just seemed to amplify her already aggressive and anxious state quite dramatically. I tried to put up with that, because I hoped the dose would help her in other ways, but it was too taxing on both of us.

Perhaps the 5mg dose (for about four years now) is why she seems to be declining faster than the specialist anticipated, but it's all a bit of a lottery and Mum had some quite advanced symptoms quite early even though she was fine physically back then.

I wonder in retrospect whether I should have pushed for a change in medication, but I always get the impression that it's all clutching at straws really; mask one set of symptoms, emphasise others. Dementia's a moving target and it's always hard to know what's helping and when. But some folk really do seem to benefit, from what I've read on here. So better to have tried and failed than not at all.
 

Caroline 890

New member
Nov 17, 2019
2
0
My Mum tolerated 5mg 'ok' but whenever we tried stepping up to 10 it just seemed to amplify her already aggressive and anxious state quite dramatically. I tried to put up with that, because I hoped the dose would help her in other ways, but it was too taxing on both of us.

Perhaps the 5mg dose (for about four years now) is why she seems to be declining faster than the specialist anticipated, but it's all a bit of a lottery and Mum had some quite advanced symptoms quite early even though she was fine physically back then.

I wonder in retrospect whether I should have pushed for a change in medication, but I always get the impression that it's all clutching at straws really; mask one set of symptoms, emphasise others. Dementia's a moving target and it's always hard to know what's helping and when. But some folk really do seem to benefit, from what I've read on here. So better to have tried and failed than not at all.
My mum has just been started on done pezil. ..I was hoping it would calm down her v agitated behaviour
 

Dimpsy

Registered User
Sep 2, 2019
1,906
0
My mum started on Donepezil 5mg, then upped to 10mg from November 2017. She had vivid dreams for a few weeks which, at the time, I didn't associate with Donepezil, but since discovering TP, now realise it was probably a side effect, but the only one, thank goodness.

Mum has always been a cheerful / laid back person and remains so, the AZ does not appear to have changed her emotionally, however, whether it has stabilised her memory is open to question. It was pretty bad before diagnosis and I would say is gradually getting worse.
It's probably harder for us to judge as mum lives with us, so we don't notice the decline as much as someone who lives away from their PWD.
 

Andrew_McP

Registered User
Mar 2, 2016
390
0
60
South Northwest
My mum has just been started on donepezil. ..I was hoping it would calm down her v agitated behaviour
My mother's dementia was described as 'FTD type Alzheimer's', whatever that really means. All I know is that she was a strong, feisty, no-nonsense woman all her life and dementia dialed that up to 11! Not everyone has the same reaction, otherwise it'd never get prescribed. However it's good to be warned about potential complications.

Fingers crossed for you and your Mum.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
My mum started on Donepezil 5mg, then upped to 10mg from November 2017. She had vivid dreams for a few weeks which, at the time, I didn't associate with Donepezil, but since discovering TP, now realise it was probably a side effect, but the only one, thank goodness.

Mum has always been a cheerful / laid back person and remains so, the AZ does not appear to have changed her emotionally, however, whether it has stabilised her memory is open to question. It was pretty bad before diagnosis and I would say is gradually getting worse.
It's probably harder for us to judge as mum lives with us, so we don't notice the decline as much as someone who lives away from their PWD.
My husband used to take donepezil for a while but has been using rivastigmine for almost five years. He often complains about having nightmares and as he hasn't used donepezil for years, I believe it is more something to do with dementia than the drug. He can't really remember what happens in his dreams but he says they are terrible.
 

Dimpsy

Registered User
Sep 2, 2019
1,906
0
My husband used to take donepezil for a while but has been using rivastigmine for almost five years. He often complains about having nightmares and as he hasn't used donepezil for years, I believe it is more something to do with dementia than the drug. He can't really remember what happens in his dreams but he says they are terrible.

You may have something there @Lawson58, when mum first moved in with us she had awful, distressing nightmares of a particular member of the family, who, shall we say, wasn't very nice to her and mum would wake up crying.
Those nightmares had faded by the time Donepezil was started and the dreams she had then weren't about (him), they didn't frighten her. They were vivid and usually she was walking along a path, around a hill holding her father's hand and they seemed to comfort her.
She never mentions now if she dreams or not so it's hard to judge if it was the dementiia or the drugs.
 

Flavelle

Registered User
Jun 20, 2017
48
0
My mum has just been started on done pezil. ..I was hoping it would calm down her v agitated behaviour

Welcome to TP Caroline 190
Good luck with your mum and her medication. I just wanted to say that Aricept (donepezil) did reign in many of my mother’s symptoms over a long period. (Her opinion when she had capacity and shared by me.) My Dad was more resistant to being given meds therefore carried on (maybe went further downhill) before starting. In the long term I think it has defo taken the edge of his aggressive streak. Clearly there are side effects. He took several weeks to settle into taking the stuff and that situation repeated when it was upped to 10mgs. M has been on it longer and is now catheterised and chair or bed bound, depending on where we move her. Due to the circumstances of looking after both I wouldn’t do without D’s donepezil as anything to take the edge of aggression is good in my book, especially if there’s another one shouting at nighttime! It’s possible it has had an negative impact on his urinary system but as he also has Prostate Cancer it’s hard to tell. All the best
 

Help!

Registered User
Sep 23, 2019
51
0
Just seen these. My dad has been on the 5mg now just near 2 months and I have not seen ant change for the better. In fact during the night far worse and waking soaked through and not understanding anything that I try to help him with there was a few good nights at ist I thought it started well he seemed alert but then more so like this plus very emotional and once up slept in his chair till half 1 only waking when I gave him anything to eat and having to remind him to drink tea. Sonu decided to stop them night before last and the consultant said on our last visit before he started on them that we can do that .I just hope I am doing the right thing. I don't want my dad sleeping for most of the day feeling upset ,so the ist night he went without it he was more alert when woke during the night and had a much better day yesterday and last night he had a sudden memory of when he was in infants and was talking about it in bed but it upset him and unsettled him so all during the night till this morning he has been asking himself what's wrong with him and why is he like this. Our appointment isn't until end of December we were not called back after the MRI scan as was told before hand if shows no different to what they thought no need. I didn't put my dad on the 10gr as also we were told said I should after the ist month there was no way I was going to without checkup ist. So I stuck with the 5gr. But as I say I will see what he is like without them cos yesterday he was so much better. I just don't know if I am making the right choice as it's supposed to slow it down but he has no quality of life if sleeping and emotional for most of the day and especially more so these past couple of weeks .
 

Kennyboy

Registered User
Oct 31, 2019
50
0
After a diagnosis of an 'Alzheiner's like process', My husband was given 5 mg of Donepezil back in June - for the first 4 weeks he was much more confused and agitated than he had been, and had trouble with his waterworks, although this settled a bit after another month or so. When we saw the consultant in October he doubled the dose to 10 mg. We didn't get the prescription until mid november, and within a week he was again confused, agitated and less himself. We have persisted, but in the last month he is definitely more confused; he can drop into a brief 'sleep', even when in conversation, passes water all night urgently and has just developed stiffness in his back and legs. We are both wondering if this is inspite of or because of the increased medication. See consultant in 4 weeks, but am going to check with GP meantime.

Has anyone else encountered this or had dosage reduced or changed drug? Pittheath
We have just had the same situation with my sons Nan, they increased her dose to 10mg 2 weeks ago and it had loads of side effects, she became incontinent (urine) had accident with her bowels, she was behaving very oddly, and became very aggressive and more confused, I phoned her nurse and she agreed that we should put her back down to 5mg luckily I had some in the house so did it straight away, you should not have to wait to see the consultant for this to be done, has he got a nurse allocated to him if so speak to them, they can d’action the change for you take care x
 

Wakky

Registered User
Jan 5, 2020
54
0
My mother has just been diagnosed with dementia of the Alzheimer type.
She was immediately prescribed Donepezil 5mg to take daily at night and has been on these for one week.
She is actually worse..she has less memory, has become slightly aggressive / agitated and moved all the furniture around.
I will be ringing the consultant today.

Hi, I have just joined this site, my husband was diagnosed in September 2019. He is 70, physically fit and active and still driving. He was prescribed donepezil 5mg at night. The nurse did a home visit after about 3 weeks with a view to increasing to 10mg, but decided against it as he was having headaches, some leg pain and loose stools. She is coming next week to review again. She told me all the research results are based on a 10mg dose. The reason I am responding to your post is that I too have noticed an increase in my husband's verbally aggressive behaviour and his memory is certainly no better. I would say overall he seems worse and in a very short space of time. If the medication is not helpful, I feel he may as well come off it. My mother was given exactly the same medication in the 5 years following her diagnosis and she died about 19 years ago. Treatments have not moved on as yet. May I ask how old your mother is?
 

Twopoodles

Registered User
Dec 23, 2019
44
0
Mum had severe diarrhoea and pain when starting Aricept, it was changed straight away to memantine and she tolerates that well. Maybe I’m deluded but think she is reasonably stable on it although only been a few months.
 

deepetshopboy

Registered User
Jul 7, 2008
653
0
Hi my dad was put on donezipral back 2013 still on the tablets now
They are described as the wonder drug as they are meant to hold back alzeimers not cure it obviously im my dads case it seemed to work as he was okish till suddenly declining 2017/18 then i had a struggle to get him on mementine e which hes on now which im not sure is working there comes a point when these drugs s stop working i think thats what has happened in hes case but no side effects or if there is ive put them down to alzeimers getting worse
 

Help!

Registered User
Sep 23, 2019
51
0
My dad was on them for 6 weeks and yes they made him worse he was waking in a frightened state up to 4 times during the night eyes wide open staring ahead ,it was horible and then sleeping heavily in chair half the day plus leg cramps and he would wake startled so I stopped them and he hasn't done this since but since off them he doesn't appear as alert as before he went on them ,but I am to start him on another drug a months worth a week of 5mg and 10 15 and 20 and if all ok continue with the 20..before the ist drug my dad would be after ten mins seeing where I am in the house and looking or following me ,the doctor asked what do I want from this drug one of the things I said is for him to be able to focus on something else other than me ,watching telly rather than seeing where I am all the time ,the drug stopped that but only due to making him tired ,which I didn't want ,and since off it he hasn't done it anymore but only cos he's more confused .I keep thinking I wish I had never tried the drug at least he was up and about the house even if was constantly seeing where I am so he was more active n,he's just sitting in chair more so..I hope these drugs cause no side effects and help make him focus on things.
 

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