An update on my mother's experience of starting donepezil.
Having experienced unacceptable side effects 12 days after stepping up the dose from 5mg to 10mg, which triggered a GP referral for rapid hospital assessment, she was taken off the donepezil entirely for two days, then restarted at the lower dose.
She's been back on the lower dose (5mg) for 10 days, now, with no significant side effects. The extreme shakiness/tremor in her hands that she was getting on the 10mg dose seems to have resolved and she appears less anxious. At 10mg, she was very cognitively shot; that has improved to around the level she was at while on the lower dose.
She had a visit from the CPN, today, who carried out another MMS test, which she scored well in. (I am a long distance carer/advocate and not present at these follow-ups.)
It has been agreed between the CPN and my mother that she will continue at the 5mg dose and she has now been discharged back to the oversight of her GP. There will be a follow-up by the Memory Clinic in 6 months.
The CPN had jotted some notes down for her to pass on to me and as far I am aware, nothing was said about assessing before 6 months to decide whether it was worthwhile her remaining on the medication.
Although I receive copies of some paperwork relating to the Memory Clinic assessments, I was given no information at all on donepezil, likely side effects, expected outcomes, short and long-term efficacy etc. So I've had to do my own research on this medication.
I understand that the "half-life" of donepezil is 70 hours.
This document on administration of donepezil was on a U.S. medical site but I've seen the same text incorporated into literature for nursing staff in UK NHS settings.
http://wps.prenhall.com/wps/media/objects/3775/3866436/npf_charts/ch20/Donepezil.pdf
I don't have the references to hand, but on U.S. medical sites, I've read that if there is no perceived improvement within 3 to 4 months, determined by assessment tools in conjunction with family or carer/caregiver perceptions, then it may be decided to discontinue the medication.
May1's original post had asked:
"Can anyone tell me when donepezil kicks in? My OH has been on it for 3 weeks .Not noticed any difference yet..."
Apart from the two day "wash-out" break before being restarted at the 5mg dose, my mother has now been on donepezil for 7 weeks.
During this period, I've had daily phone chats with her and this is my impression, after 7 weeks. She does seem more motivated to do things, like phone old friends or to write letters. Apart from the 12 days when she was on the higher dose, she's mostly sharp on a minute to minute basis and is dealing competently with domestic admin, domestic chores etc. Her attention span may be a little better.
However, I do feel that her short-term memory has been noticeably worse since three days after she first started the tablets.
Correlation does not imply causation and she may have experienced a worsening, anyway, during this period, irrespective of what medication she was taking. However, given how "out of it" she was 12 days after moving onto the 10mg dose, it may be significant.
We'll see how she goes over the next few weeks.