Coming off donepezil

Whyzit

DH has been sleeping for 14 hours a day and complains of being exhausted all the time. He has been on donepezil (5mg) at bedtime and mementine (10 mg) twice a day for over 6 years. Both have tiredness as side effect. His geriatric psychiatrist and pcp have decided to ween him off of donepezil but are concerned it may send him into a rapid cognitive downturn. He is steadily going downhill cognitively anyway which indicates the drugs initial purposes are no longer effective. I am the one who initiated this action but oh how I would like to be certain this is the wise thing to do. Seeking quality of life, not quantity. Any thoughts?

Marie58

Whyzit wrote:

 He has been on donepezil (5mg) at bedtime and mementine (10 mg) twice a day for over 6 years. Both have tiredness as side effect. His geriatric psychiatrist and pcp have decided to ween him off of donepezil but are concerned it may send him into a rapid cognitive downturn. He is steadily going downhill cognitively anyway which indicates the drugs initial purposes are no longer effective. 

My DH took both of those as well for about 5 years and when we stopped them I didn't notice any difference. The cognitive decline happened while taking the drugs and after stopping them. Was is slower while taking them? Perhaps, but one never knows. 

Joydean

Whyzit, I’m not in anyway giving medical advice, my DH has been on same meds for 3 years. On reading and studying both meds, the articles I have read say their effectiveness only last for about 3 to 4 years. As I said this is based on the article’s that I have read. I don’t know if this is helpful for you or not.

Rescue mom

Just a ditto to what Marie said. She described our experience very well. Maybe it would have been worse without them. But there were no untoward side effects with them, so who knows? It did not do any apparent harm, and maybe helped. No harm, no foul Imo.

Jeff86

As other noted, it’s impossible to know the counter factual….would my DW have progressed faster if she had not been on donepezil and memantine?

My DW also sleeps about 14 hours/day nowadays.  She has been on these meds for over five years.  At this point (stage 6d), I doubt they’re helping.  But it’s as likely if not more so that it’s disease progression that explains the long sleep, rather than the meds.   

Last point on this subject:  when I suggested to DW’s neurologist that perhaps we could drop these meds, she preferred not to—said, in her clinical experience, some patients do suffer significant cognitive decline when they cease taking these meds.

Gig Harbor

My husband has been on both for 6 years and I give him the Donepezil in the morning. He is declining but our life is tolerable right now. He is starting to have mild sundowning in the afternoon. He starts to believe the people in the TV are real. I either suggest a walk or a car ride and I turn the TV off. I can usually break the cycle by doing that. I am afraid to stop the meds in case he gets much worse and I can’t stop the sundowning. We have an appointment with his PCP next week and I am going to ask him about the possibility of adding low dose Seroquel to try to stop the sundowning. He never seems tired and never takes naps. He does sleep all night but for a total of about 10 hours. Since the drugs are cheap and aren’t causing him problems I will keep giving them to him.