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Donepezil is making my mum worse

Gniyazi

New member
Jan 1, 2021
2
0
Hi all,

My mum's suffered from memory loss & decreased confidence for a few years now & has consequently socially isolated herself from everyone except me. Following an MRI in 2013, she was given anti-depressants as she was considered too young to have dementia (she's now 71). Following a fall resulting in a shoulder break in September, she had a memory assessment via Zoom (due to Covid restrictions). I was sceptical about this, as my mum is not technologically competent, and I could see she was struggling to hear through the echos of the audio & wasn't engaging in a relaxed way. Following this, however, and in reliance on the 2013 MRI, she was diagnosed with Mixed Dementia & prescribed donepezil. The 5mg for 6 weeks had no effects - good or bad. Then increased to 10mg, which she's been on for the past 6weeks.

I brought my mum to stay with us for the Xmas period. That's when I noticed a major decline - she became vegetative, constantly tired & confused. She developed a weird facial tic. Seeing her blank facial expressions broke my heart. When she was awake, she would cry about her childhood memories & about not having a mum, who'd died when she was 5. But there were huge gaps in her longterm memory. She went from having mild short-term memory problems to exhibiting more severe dementia symptoms. Became a lot more repetitive & agitated, although not aggressive. The final straw for me came on Boxing Day night. I was getting ready to go to bed at 1am when I noticed my mum's bedroom door open. Went to check on her & found her getting dressed. I asked why & she said because it's time to walk the dog. She thought it was morning. The fact that she'd suddenly deteriorated to the point of developing sundowning & wandering in just 12weeks since diagnosis petrified me. I've cried my eyes out everyday since the diagnosis, but the crushing heartache I felt that night is indescribable. I thought, this is it, I've lost her forever. My partner immediately got up & padlocked the chain into the door so that she wouldn't be able to remove the chain, just in case she tried to leave again. But even still, I didn't sleep a wink that night & have been surviving off 3hours max sleep a night since, despite knowing that there's no way she could get out. She wants to go back to her own home now that Xmas is over, but I can't take that risk.

I've since decided not to give her the donepezil. I've read numerous sources about the side effects of donepezil & nowhere does it mention anything about what we experienced or anything about worsening / inducing dementia symptoms. She's gone back to being how she was before starting the donepezil, which is 100times more preferable than the psychosis the meds seemed to induce. But of course I am now worried that things might get even worse now.

I just wanted to know whether others have experienced what we have? It's making me doubt my mum's diagnosis and I'm terrified I'll lose her to the side effects of these drugs...
 

Louise7

Volunteer Host
Mar 25, 2016
2,892
0
Welcome @Gniyazi you'll find lots of friendly advice and support here. My mum was on Donepezil 10mg for around 4 years with no side effects but others here have posted that the 5mg dose was fine but an increase to 10mg caused various adverse side effects.

I would suggest talking to the GP as soon as you can as it is not advisable to stop medication yourself, particularly if your Mum has been on the lower dose with no problems. Mum's Donezepil was stopped suddenly by the hospital due to a possible heart problem - rather than weaned off gradually - and there was a noticeable deterioration as the medication reduces the dementia symptoms. The GP may suggest starting the lower dose again, but don't leave it too long before seeking medical advice about this situation.
 
Last edited:

Gniyazi

New member
Jan 1, 2021
2
0
Welcome @Gniyazi you'll find lots of friendly advice and support here. My mum was on Donepezil 10mg for around 4 years with no side effects but others here have posted that the 5mg dose was fine but an increase to 10mg caused various adverse side effects.

I would suggest talking to the GP as soon as you can as it is not advisable to stop medication yourself, particularly if your Mum has been on the lower dose with no problems. Mum's Donezepil was stopped suddenly by the hospital due to a possible heart problem - rather than weaned off gradually - and there was a noticeable deterioration as the medication reduces the dementia symptoms. The GP may suggest starting the lower dose again, but don't leave it too long before seeking medical advice about this situation.
Hi Louise. Thanks for your insights and advice. I spoke to her GP yesterday, so stopped the donepezil on her advice. But of course I'm still worried that it may have an even worse effect than before in a few weeks from now. She seems fine for now but it's only been a day, so I'm just worried she'll get worse.
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,221
0
Nottinghamshire
Welcome from me too @Gniyazi

My dad had problems with the 10mg dose of Donepezil, his behaviour was an absolute nightmare. His doctor reduced his dosage back to the 5mg dose as he’d been fine and this. This almost immediately improved his behaviour and he stayed on this dosage until the end of his life. Speak to her GP and see if your mum can try the 5mg dose again as she was ok on that.
 

Lawson58

Registered User
Aug 1, 2014
2,284
0
Victoria, Australia
My husband had some problems with donepezil but nothing like your mum's. He had tummy problems so was switched to a different medication called rivastigamine which is administered by patches.

Your mum's deterioration may or may not be from the donepezil but if it's not doing anything for her, then there is is no point in continuing with it.

I do hope you get this sorted out soon.
 

lollyc

Registered User
Sep 9, 2020
166
0
My Mum stopped Donepezil because of other side effects, and I can honestly say it made no difference to her dementia symptoms one way or the other. I confess I am quite sceptical about the specific dementia "treatments", but that's just me. In the last 2 years we have managed the inevitable deterioration with anti-depressants / anxiety tabs, which work, on the whole.
Her GP never suggested an alternative to Donepezil.
 

Andy54

New member
Sep 24, 2020
2
0
My Mum stopped Donepezil because of other side effects, and I can honestly say it made no difference to her dementia symptoms one way or the other. I confess I am quite sceptical about the specific dementia "treatments", but that's just me. In the last 2 years we have managed the inevitable deterioration with anti-depressants / anxiety tabs, which work, on the whole.
Her GP never suggested an alternative to Donepezil.
 

Andy54

New member
Sep 24, 2020
2
0
My wife was prescribed Donepezil when her AD diagnosis was confirmed in 2015. She seemed to tolerate it well at the time the only side effect being an increase in urinary frequency which I believe is quite common. It is impossible to say if it has actually had any benefits. Around 3 months ago she started complaining or should I say indicating, as by now her verbal communication is very difficult to understand, that she was having episodes of vaginal pain. These episodes occurred 2 or 3 times a day usually lasting an hour to an hour and a half and when the pain was present she had a very frequent urge to pass urine.
Her GP initially treated as a UTI (without having a sample) but the problem continued. Since then we have had 12 telephone consultations, 1 visit to urgent care, 2 visits to GP surgery and an ultrasound and and still no solution. Given that the problem seemed to be associated with urinary urge I began to wonder if Donepezil might be contributing to the problem, a suggestion her GP dismissed. When I pointed out that she was overdue for the annual review of her condition/medication I was told she would have to be referred back to the memory service !. Over the Christmas period I decided in desperation to try stopping the Donepezil, I tapered it off over a week and after 5 days with no Donepezil the mystery pains seem to have stopped. Of course to prove the point I would have to re-introduce the Donepezil which I am reluctant to do. My experience over the last six years is that many in the medical profession regard dementia as someone else's problem.
 

angelict

Registered User
Jan 16, 2020
153
0
You poor Mum and you my Mum was offered this drug a year ago by older persons mental health it was awful she basically wasn't moving and not eating my Mum also at the time was getting utis plus one of her diabetic meds had to be withdrawn. So it was calls to the gp paramedics came out plus calls to 111. I was told to stop the donepezil but then of course the OPMH came out the following month they offered her another drug but then she wasn't well again so they discharged her. They came out again last September they suggested a low grade antibiotic for infections and the gp now manages this. No courtesy call to see how she's been getting on or anything. As I have had various things happen I have contacted the CQC more work but I have felt at times the treatment by OPMH has been diabolical in fact one of them I never want to see the woman again coming into someone's house as a complete stranger and when she was asked who she was she said oh I feel like I'm at a job interview fortunately I got my Mum support from a charity and they have been completely understanding about everything. Please look after yourself😉
 

Keeping on

New member
May 21, 2018
3
0
Hi all,

My mum's suffered from memory loss & decreased confidence for a few years now & has consequently socially isolated herself from everyone except me. Following an MRI in 2013, she was given anti-depressants as she was considered too young to have dementia (she's now 71). Following a fall resulting in a shoulder break in September, she had a memory assessment via Zoom (due to Covid restrictions). I was sceptical about this, as my mum is not technologically competent, and I could see she was struggling to hear through the echos of the audio & wasn't engaging in a relaxed way. Following this, however, and in reliance on the 2013 MRI, she was diagnosed with Mixed Dementia & prescribed donepezil. The 5mg for 6 weeks had no effects - good or bad. Then increased to 10mg, which she's been on for the past 6weeks.

I brought my mum to stay with us for the Xmas period. That's when I noticed a major decline - she became vegetative, constantly tired & confused. She developed a weird facial tic. Seeing her blank facial expressions broke my heart. When she was awake, she would cry about her childhood memories & about not having a mum, who'd died when she was 5. But there were huge gaps in her longterm memory. She went from having mild short-term memory problems to exhibiting more severe dementia symptoms. Became a lot more repetitive & agitated, although not aggressive. The final straw for me came on Boxing Day night. I was getting ready to go to bed at 1am when I noticed my mum's bedroom door open. Went to check on her & found her getting dressed. I asked why & she said because it's time to walk the dog. She thought it was morning. The fact that she'd suddenly deteriorated to the point of developing sundowning & wandering in just 12weeks since diagnosis petrified me. I've cried my eyes out everyday since the diagnosis, but the crushing heartache I felt that night is indescribable. I thought, this is it, I've lost her forever. My partner immediately got up & padlocked the chain into the door so that she wouldn't be able to remove the chain, just in case she tried to leave again. But even still, I didn't sleep a wink that night & have been surviving off 3hours max sleep a night since, despite knowing that there's no way she could get out. She wants to go back to her own home now that Xmas is over, but I can't take that risk.

I've since decided not to give her the donepezil. I've read numerous sources about the side effects of donepezil & nowhere does it mention anything about what we experienced or anything about worsening / inducing dementia symptoms. She's gone back to being how she was before starting the donepezil, which is 100times more preferable than the psychosis the meds seemed to induce. But of course I am now worried that things might get even worse now.

I just wanted to know whether others have experienced what we have? It's making me doubt my mum's diagnosis and I'm terrified I'll lose her to the side effects of these drugs...
 

Keeping on

New member
May 21, 2018
3
0
Hi my Mother suffered quite bad effects, she almost instantly became ‘zombie like‘ for long periods especially in the morning ..Obviously I got advice from her consultant who recommended she stop taking it . She did improve but she is now (some one year later) suffering a decline, but still not as bad as when she was on the drug. Unfortunately, because she is not taking medication we do not receive regular checkups from the consultant..we need to go back to the Doctor when we feel concerned.
 

Louise7

Volunteer Host
Mar 25, 2016
2,892
0
@Keeping on It may be worth you contacting your mother's consultant again to explain how she has declined as there may be another dementia medication that can be tried to help control the symptoms.
 

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