Cease taking Donepezil

[sajimjo]

I've not posted for ages but read a few posts everyday. You all give me strength to cope with my partner, for which I am grateful.
He has been on steroids (fludrocortisone) for nearly 2 years to help raise his blood pressure as he was having syncopes, it worked for sometime. However recently his BP has started dropping again and he has fainted several mornings. We saw GP the other day who doesn't want to increase medication or give him something new. GP suggested we stop the Donepezil 10mg which OH has been on for over 4 years. My question is has anyone else experienced this and will there be any obvious effect not taking Donepezil?
Best wishes to everyone
Sajimjo

 

[Beate]

Yes, there could be a sudden, irreversible downturn. Is the doctor saying the Donepezil causes the blood pressure to drop? Wouldn't it make more sense to cut it down to 5mg first? Unless there are serious side effects, Donepezil shouldn't just suddenly be stopped, though of course no one knows how much use it still is after 4 years.

 

[Countryboy]

I started taking Aricept in 1999 and continued on them since then, however in around 2006/7 I had a brief trial off the Aricept possibly a week my family notice a significant drop in my concentration and mood I was put back on the Aricept immediately so I have been on it for 18 years No side effects not sure if that helps

 

[sajimjo]

Yes, there could be a sudden, irreversible downturn. Is the doctor saying the Donepezil causes the blood pressure to drop? Wouldn't it make more sense to cut it down to 5mg first? Unless there are serious side effects, Donepezil shouldn't just suddenly be stopped, though of course no one knows how much use it still is after 4 years.

Thanks @Beate, I did wonder after seeing GP about reducing to 5mg. Also it is so difficult to tell if the Donepezil is doing any good, certainly I was not aware of improvement when he first went on the tablets. GP did look up in his drug manual about side effects and decided it was worth a try for a month without donepezil.

 

[sajimjo]

I started taking Aricept in 1999 and continued on them since then, however in around 2006/7 I had a brief trial off the Aricept possibly a week my family notice a significant drop in my concentration and mood I was put back on the Aricept immediately so I have been on it for 18 years No side effects not sure if that helps

That's useful to know @Tony, many thanks.

 

[nitram]

Low heart rate rather than low blood pressure is a contraindication for Donepezil
https://www.medicines.org.uk/emc/product/3776#CLINICAL_PRECAUTIONS

The official line on stopping medication is
Upon discontinuation of treatment, a gradual abatement of the beneficial effects of ARICEPT is seen.
Scroll previous link to see this.

Because of a low heart rate caused by taking a beta blocker my wife had a low heart rate, initially this was discounted but after regular ECGs Donepezil was changed to Memantine before other symptoms indicated this.

Can you contact the consultant who originally prescribed Donepezil for advice?.

 

[Beate]

I agree with nitram - the Memory Clinic consultant is usually the one overseeing this medication so should be approached. A GP might not know as much about possible condition downturns.

 

[karaokePete]

Thanks @Beate, I did wonder after seeing GP about reducing to 5mg. Also it is so difficult to tell if the Donepezil is doing any good, certainly I was not aware of improvement when he first went on the tablets. GP did look up in his drug manual about side effects and decided it was worth a try for a month without donepezil.

With my wife I did not see any improvement with memory, cognitive skills etc., when Donepezil was started. However, she had a definite improvement in her ability to function and I would be reluctant to have her stop taking it. Before my wife was started on the med she had to have an ECG to check she was ok for it so I suppose your GP may be concerned that it is having an adverse effect for minimal benefit if you think it isn’t useful.

 

[LynneMcV]

I agree with the comments regarding contacting your memory clinic consultant about this.

With the best will in the world, GPs do not always know as much about dementia medication as those attached to the Memory Clinic/CMHT do.

I am under strict instructions from our CMHT to go to them with any matters regarding medication for my husband - an instruction which stayed in place even during a very short period when we were signed off by the CMHT back to the care of the GP earlier this year.

 

[Agzy]

My OH started on Donepezil 18 months ago and to me it rolled everything back and humour of sorts returned, bad mood swings dramatically decreased and not so many ‘confusions.’ I dread to think how things would be without it as our quality of life has, in general, really improved.

 

[sajimjo]

Low heart rate rather than low blood pressure is a contraindication for Donepezil
https://www.medicines.org.uk/emc/product/3776#CLINICAL_PRECAUTIONS

The official line on stopping medication is
Upon discontinuation of treatment, a gradual abatement of the beneficial effects of ARICEPT is seen.
Scroll previous link to see this.

Because of a low heart rate caused by taking a beta blocker my wife had a low heart rate, initially this was discounted but after regular ECGs Donepezil was changed to Memantine before other symptoms indicated this.

Can you contact the consultant who originally prescribed Donepezil for advice?.

Thank you for that link @nitram. I can't remember who the consultant was we saw years ago, they certainly have never contacted us again, probably because OH was signed off to the GP.
It took a while before they decided to put OH on Donepezil because he has a pacemaker to maintain his pulse over 60bpm, as he has an intermittent blockage. He is not on beta blockers.

 

[Texas Cowboy]

In early 2014 my wife started repetitive questions about date, time of day, what's next and seeing the same person, the same car, etc. I was concerned, but our GP held off a referral. All these symptoms grew in frequency, kind and quantity. Then in October 2015 we were referred to a specialist for testing. Some tests indicated normal for age, others not so. The specialist diagnosed my wife with Cognitive Impairment and started Donepezil. In October 2016 the doctor added Namenda. Together the Donepezil and Namenda have slowed progress and the mood swings leveled out.

She still takes the daily medications from a weekly pill box that permits me to monitor her use.
I ventured into a new realm and got a dog as a companion--best ever to monitor moods.

Our GP see her frequently enough that he keeps a good record of pulse and BP

NEVER change medications without the recommendation of a doctor (MD). With a firm diagnosis in hand, I cannot suggest listening to "snake oil salesmen" or "try this" practitioners. Maybe what works for one will not work for another.

Unfortunately, my wife's family is awash in dementia and Alzheimers: father (deceased), sister (deceased), maternal uncle (deceased), maternal aunt (deceased).

Is this genetic, environmental, dietary, life style, etc.? The (hung) jury is still deliberating.

 

[Louise7]

My Mum has been on Donepezil for over 4 years and seemed to be doing well on it but in the last 18 months has had a number of hospital visits due to dizziness/falls. During her first hospital visit the GP in A&E commented that Mum's heart rate had been very low in the ambulance and referred this to the GP but this wasn't explored any further. Following a further hospital stay recently due to another fall they again found a low heart rate and this time, having monitored her heart, the hospital stopped the Donepezil after I suggested to the doctor that perhaps it might be causing the problems.

Mum was visited by the mental health team on Monday and the doctor advised that as Donepezil is primarily intended for early/moderate Alzheimer's and Mum is now moving on to late stage she felt that stopping it would not cause any real issues. She considered memantine but as this can cause falls, and Mum's main problem at the moment is severe agitation/anxiety (caused by a lengthy stay in hospital this summer), she is just going to try citalopram for now, on its own. It has taken 18 months of GP/Hospital visits (and an incorrect diagnosis of epilepsy) before the link between the low heart rate, Donepezil and falls has actually been considered so fingers crossed no more falls! I would agree with what others have posted in that it is better to see a mental health doctor / memory clinic with regards medication as the GP and hospital doctors are not dementia specialists so things can be missed, plus there can be a lot of trial & error in finding the right medication.

 

[Bunpoots]

Dad's dose of Donepezil was reduced from 10mg to 5mg with no noticeable downturn. The higher dose didn't agree with him, but the GP did refer him back to the memory clinic as he didn't feel he had the expertise to make that decision himself.

 

[sajimjo]

Many thanks to everyone who have replied to my query about giving up Donepezil. I have rung our memory clinic but not been able to speak to anyone with expertise yet. So far OH has been fine.

 

[nitram]

You may be interested in:

 

[nitram]

I have rung our memory clinic but not been able to speak to anyone with expertise yet

You may need a referral from the GP to open your case again.
Maybe one to cardiology as well?

 

[Agzy]

You may be interested in:

View attachment 57757

Excellent and instructivethank you Nitram

 

[sajimjo]

You may be interested in:

View attachment 57757

Thank you Nitram, that is very interesting and useful. I've not heard from anyone today, will have to push it next week.
I am a bit concerned because OH is going into respite on 22nd for a week so I can go and see my sons. That might sound a bit mean but it is the only chance I have.

 

[BleuDay]

My Mum has been on Donepezil for over 4 years and seemed to be doing well on it but in the last 18 months has had a number of hospital visits due to dizziness/falls. During her first hospital visit the GP in A&E commented that Mum's heart rate had been very low in the ambulance and referred this to the GP but this wasn't explored any further. Following a further hospital stay recently due to another fall they again found a low heart rate and this time, having monitored her heart, the hospital stopped the Donepezil after I suggested to the doctor that perhaps it might be causing the problems.

Mum was visited by the mental health team on Monday and the doctor advised that as Donepezil is primarily intended for early/moderate Alzheimer's and Mum is now moving on to late stage she felt that stopping it would not cause any real issues. She considered memantine but as this can cause falls, and Mum's main problem at the moment is severe agitation/anxiety (caused by a lengthy stay in hospital this summer), she is just going to try citalopram for now, on its own. It has taken 18 months of GP/Hospital visits (and an incorrect diagnosis of epilepsy) before the link between the low heart rate, Donepezil and falls has actually been considered so fingers crossed no more falls! I would agree with what others have posted in that it is better to see a mental health doctor / memory clinic with regards medication as the GP and hospital doctors are not dementia specialists so things can be missed, plus there can be a lot of trial & error in finding the right medication.

Hi
My oh has been off donepizil and memantine and sertraline now for about 3 weeks. I’ve noticed him to be a little steadier on his feet and has more energy. The falls were awful and this involuntary jerking movements were contributing to the falls. However this seems to have stopped. He is also taking 2 blood pressure tablets amildopine 5mg and perindopril 4mg and he is also taking Atorvastatin 20 mg.
My friends husband who doesn’t have AD was taking amildopine and atorvastatin and had to come off them recently as they were slowing his heart rate. Wud be grateful to know if anyone has had any issues with these last 3 drugs.

I agree that gps are very much guided by partners/spouses.