Looking for other experiences with Aricept.

Posted by DanL @tunared, Apr 3, 2021

My wife is ending her 2nd month on Aricept (1 month on 5mm and 1 month on 10mm) and wants to stop it because of the (bad) dreams and hallucinations she has experienced. She has never had these problems before Aricept. Anyone else have bad experiences with Aricept? It does not appear to slow down her MCI decline. We meet with her Neurologist next week and will be discussing the problems with him. We are just interested in anyone else who experienced problems and did they continue with the drug or did they stop it.
We will also be asking the neurologist about the current study at the Geisel school (Dartmouth medical school) and the effectiveness of L-Serine.
All comments would be appreciated.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

My wife started Aricept on Dec. 4, 2021; same dose regimen as you noted. She is still on this medication at 10 mg per day. Results have shown some improvement to MCI; no side effects; no bad dreams.

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@jal333

My husband has issues with excessive salivation on donepezil. Unsure if taking it is helping or not at this point.

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My wife has been taking donepizil since Dec. 4, 2021. No excessive salvation experienced.

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Aricept caused bad headaches for my husband, so the neurologist switched him to the Excelon patch. We started at 4.5...then the 9.4 (?) and next we go to the 13mg. It seemed to help for awhile. However, I do feel that the LBD is advancing and just wonder how many of these meds will become more of a hinderance than a help. He is still active in that he still drives (we know this will be ending one day but he did well on a 3 hour driving test is Jacksonville) mows the yard, vacuums, makes the bed, etc. But he was once the funniest person and now is quite withdrawn, is afraid to speak up in social situations, is very insecure in large settings, stares into space,, wants me with him 24/7, anxiety can pop up unannounced, and he is quite depressed,, etc. He is dependent for food, medications, reminders to shower, wear clean clothes, etc. It is an honor to be his best friend and helper and yet, it is an experience I wish was just a sad dream amd not reality.

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@teacher502

Aricept caused bad headaches for my husband, so the neurologist switched him to the Excelon patch. We started at 4.5...then the 9.4 (?) and next we go to the 13mg. It seemed to help for awhile. However, I do feel that the LBD is advancing and just wonder how many of these meds will become more of a hinderance than a help. He is still active in that he still drives (we know this will be ending one day but he did well on a 3 hour driving test is Jacksonville) mows the yard, vacuums, makes the bed, etc. But he was once the funniest person and now is quite withdrawn, is afraid to speak up in social situations, is very insecure in large settings, stares into space,, wants me with him 24/7, anxiety can pop up unannounced, and he is quite depressed,, etc. He is dependent for food, medications, reminders to shower, wear clean clothes, etc. It is an honor to be his best friend and helper and yet, it is an experience I wish was just a sad dream amd not reality.

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Hi,
In response to teacher502 I completely understand what you are going through. My husband has LBD and Parkinson’s and has the exact same symptoms. He doesn’t drive as he is far less active. He might do chores if I direct him on good days and he loves walking a little outside. He has less energy so he might be little further along but I understand the social withdrawal aspect. My husband is on Exelon capsules 4.5 twice daily and he hasn’t been able to take antidepressants as his stomach is very sensitive. What is your husband taking Aricept for?
Thank you, Rudy

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He was on Aricept initially for MCI. That was a bad experience. Now he has the definition of LBD and Excelon patch seems to be a better choice. My husband has been able to take Wellbutrin XL 150 every morning for depression, but that adds to anxiety. The neuro-psychiatrist prescribed Zoloft to take along with Wellbutrin only take zoloft at night. The Zoloft greatly increased the nightmares and the acting out, so we had to discontinue that at 2 weeks. We now try to just keep things calm and in a "sort of routine" to decrease the anxiety. No sad or violent or crimes scene tv/movies and NEVER any news of helicopter/plane crashes , no family problems are told to him unless they are completely unavoidable - they are all triggers for REM sleep disturbances. Sometimes the anxiety pops up in the middle of something as simple as grocery shopping and we have to finish quickly and get home. However he can drive 1,400 miles in all types of driving situations and not feel anxiety.....I stay perplexed....and surprised...and proud....and weary...holding on because of faith.
I do apologize for rambling but it does help to get this stuff out somewhere.

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@teacher502

He was on Aricept initially for MCI. That was a bad experience. Now he has the definition of LBD and Excelon patch seems to be a better choice. My husband has been able to take Wellbutrin XL 150 every morning for depression, but that adds to anxiety. The neuro-psychiatrist prescribed Zoloft to take along with Wellbutrin only take zoloft at night. The Zoloft greatly increased the nightmares and the acting out, so we had to discontinue that at 2 weeks. We now try to just keep things calm and in a "sort of routine" to decrease the anxiety. No sad or violent or crimes scene tv/movies and NEVER any news of helicopter/plane crashes , no family problems are told to him unless they are completely unavoidable - they are all triggers for REM sleep disturbances. Sometimes the anxiety pops up in the middle of something as simple as grocery shopping and we have to finish quickly and get home. However he can drive 1,400 miles in all types of driving situations and not feel anxiety.....I stay perplexed....and surprised...and proud....and weary...holding on because of faith.
I do apologize for rambling but it does help to get this stuff out somewhere.

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It's important to get things out and listen to others going through similar experiences. My wife has tried multiple types of drugs but all have had bad interactions. She is now off all pills and that seems like the best course of action for her. I try to watch out for the frustrations/anxieties and head them off by changing the directions she is heading, sometimes by just asking her to sit with me and pick out different shapes in the clouds. whatever works at the time. We know there is no medication to stop the MCI/dementia so we just take it one day at a time and enjoy it the best we can. So far the best thing that has worked for my wife is exercise. she/we will go to the gym and work out on a bike/treadmill/eliptical for 2 hours and watch some tv at the same time. gym is expensive but it is worth the money because she sleeps at night. take care of yourself

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@tunared

It's important to get things out and listen to others going through similar experiences. My wife has tried multiple types of drugs but all have had bad interactions. She is now off all pills and that seems like the best course of action for her. I try to watch out for the frustrations/anxieties and head them off by changing the directions she is heading, sometimes by just asking her to sit with me and pick out different shapes in the clouds. whatever works at the time. We know there is no medication to stop the MCI/dementia so we just take it one day at a time and enjoy it the best we can. So far the best thing that has worked for my wife is exercise. she/we will go to the gym and work out on a bike/treadmill/eliptical for 2 hours and watch some tv at the same time. gym is expensive but it is worth the money because she sleeps at night. take care of yourself

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Oh DanL, Thank you! I find your words comforting.
My hubby and I ran a 5K in May and surprisingly he placed 2nd in his age group. He could have been first but he wanted to run with me (I think to make sure I finished alive). He really does not like running...but from doing the run and the surprise of placing stirred up so many endorphins that I thought he might be getting better. Wishful thinking at best, but always room for hope!!
We try to keep active and look for fun things, especially on the questionable days...and we are trying to make things on our retirement bucket list happen at a much faster pace than we had planned. We are trying to enjoy life as much as possible, and trying to take care of things that we can. He is still physically strong and does a lot around here, but we also pay others to do chores much more than we had expected when he is still only 66. I an grateful for any moments that I can be with him, even when he is anxious, sad, grumpy, loving, lost, searching for words or....
Thanks for your wise words and your advice, take care of yourself as well.

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Hi DanL. My husband was on the generic, donepezil, since 2019. He did not experience any side effects, such as bad dreams or gastrointestinal upset. His neurologist always inquired about side effects. He's prescribed citalopram (low dose is supposed to help with mood, energy) now, so discontinued the donepezil. I don't know if the donepezil did my husband any good. He was holding his own for a while, but his short term memory is worse lately. I also had mixed feelings about donepezil as a newsletter I was getting "Worst Pills, Best Pills News" noted it was one drug never to take. Also, through "Worst Pills" I read about the following:

NEW WARNINGS ON AN ALZHEIMER’S DRUG
February 5, 2015
Here’s an important alert for Alzheimer’s disease patients and their caregivers.
On January 21, 2015, Health Canada, the Canadian equivalent of the Food and Drug Administration (FDA), issued a warning concerning two rare but potentially very serious adverse effects of the drug donepezil (ARICEPT, ARICEPT-23).[1]
Donepezil is approved for the treatment of Alzheimer’s disease. Generic versions are available from more than 20 different companies in the U.S.[2]

I hope this helps.

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@tsc

Hi DanL. My husband was on the generic, donepezil, since 2019. He did not experience any side effects, such as bad dreams or gastrointestinal upset. His neurologist always inquired about side effects. He's prescribed citalopram (low dose is supposed to help with mood, energy) now, so discontinued the donepezil. I don't know if the donepezil did my husband any good. He was holding his own for a while, but his short term memory is worse lately. I also had mixed feelings about donepezil as a newsletter I was getting "Worst Pills, Best Pills News" noted it was one drug never to take. Also, through "Worst Pills" I read about the following:

NEW WARNINGS ON AN ALZHEIMER’S DRUG
February 5, 2015
Here’s an important alert for Alzheimer’s disease patients and their caregivers.
On January 21, 2015, Health Canada, the Canadian equivalent of the Food and Drug Administration (FDA), issued a warning concerning two rare but potentially very serious adverse effects of the drug donepezil (ARICEPT, ARICEPT-23).[1]
Donepezil is approved for the treatment of Alzheimer’s disease. Generic versions are available from more than 20 different companies in the U.S.[2]

I hope this helps.

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Thank you for the info on Aricept. I get so frustrated hearing information like that from another country when our own health system does not broadcast these warnings. Thanks again DanL

REPLY
@teacher502

Aricept caused bad headaches for my husband, so the neurologist switched him to the Excelon patch. We started at 4.5...then the 9.4 (?) and next we go to the 13mg. It seemed to help for awhile. However, I do feel that the LBD is advancing and just wonder how many of these meds will become more of a hinderance than a help. He is still active in that he still drives (we know this will be ending one day but he did well on a 3 hour driving test is Jacksonville) mows the yard, vacuums, makes the bed, etc. But he was once the funniest person and now is quite withdrawn, is afraid to speak up in social situations, is very insecure in large settings, stares into space,, wants me with him 24/7, anxiety can pop up unannounced, and he is quite depressed,, etc. He is dependent for food, medications, reminders to shower, wear clean clothes, etc. It is an honor to be his best friend and helper and yet, it is an experience I wish was just a sad dream amd not reality.

Jump to this post

My husband is still active, but slowing do quickly. The stiffness he experiences really affects activities his lifestyle. He does Rock Steady Boxing 3 times a week which has been invaluable. I can’t imagine where he would be without it. I also care for my 88year old Mother with Alzheimer’s. I see both of them slowly disappearing before my eyes. My Mother was on Aricept for a year , but had to stop due to side effects. She has declined rapidly after coming off drug.

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