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.

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@nanal

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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So sad you have two close relatives with this terrible disease. My husband was on Aricept for over a year, but we stopped it as I noticed his short term memory was getting worse. The neurologist put him on a low dose of Citalopram for anxiety instead. He told me that he didn't feel so overwhelmed by things anymore. He was fairly active, walking an hour a day by himself up to last week when he fell over a box left at our front door and broke his hip. He had surgery and is now in a skilled care/rehab facility. He is doing okay, no hallucinations, and now understands that he will be there until it's safe for him to come home. I act as his interpreter with the staff. The other night, they wanted to shower him at 6:30 pm. He had eaten dinner, brushed his teeth and was ready to retire for the night. He refused the shower and I told them he was too tired. He sometimes refuses therapy, but will do it when they try again later. It seems to be all about timing for him. A PA prescribed oxycodone - 5mg, 3 x a day for his pain, but I got him off that fast. He said his pain was a "7" at a meeting I was not invited to attend. I told the staff that if his pain were a "7" he would be writhing in agony, moaning and begging for a painkiller. The care home staff were relieved when I requested no oxycodone. It can make people with Alzheimer's more confused, drowsy, prone to falling and create cravings. This is quite the learning experience.

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My husband vomited violently after taking Aricept a few times. So, for the past theee years he has just been taking Memantine with no side effects. It’s hard to know how much it helps, but his dementia doesn’t seem to be worsening significantly.

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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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Will works hard with various projects but he doesn’t walk much. We are fortunate to have YMCA membership from his company which includes the basics for us. I love the pool and there is a track for walking and that is all we need. There are sitting exercises in our park and I will look into that for us.
I have some examples of his Dementia:
For many years, He had a favorite spoon he would use to eat his cereal or ice cream. After our last move, he doesn’t want that spoon anymore. He uses an entirely different spoon.
He always loved Butter and we always had it on the table. Years ago, he used to eat margarine with Olive Oil and is what he uses now.
He still has his “heart” pillows from his heart surgery in 2014 - he has to have those! One night I thought he was holding a cat toy - we used to have a cat he loved.
I am finding many likes and dislikes changing in him very often and I just go along with them. I notice how many times he goes back to where he was years ago. Sometimes his choices are just different from any I am familiar with. He is very adamant about what he likes or doesn’t remember or that “he never said that.”Our communication is getting poor with his hearing problem and his low mumbling. Going to a hearing specialist next week and also our favorite Neurologist who we haven’t seen for 3 years because we moved to North Carolina.
It wasn’t a good move for me, no family or friends, and a few nice neighbors., no real friendships.
Will was in his glory, working on our acre property and older home, which needed everything. He was buying everything he needed or lost? regardless of cost. Thousands and thousands of dollars gone!
And this is a new one for me: The other day, I heard him ordering something from Lifeline and he seemed to understand what he was doing. When the unit arrived, he didn’t remember ordering it and so it needs to be returned - $500 worth plus monthly charges. If he had wanted to keep it, I would have, but he didn’t remember anything about it, so I canceled and sent back the unit, hopefully with a refund. Some day we may need this help, but not yet. This was a new one for me and something I’ll be more aware of in the future.
In the meantime in NC, I was so lonely and with COVID, didn’t go to church or join a woman’s club. Bugs and snakes everywhere - had exterminators but did not get rid of black ants.
The people in general were very friendly but I never got to know them. We were living in the middle of a forest and was it quite beautiful but HOT in the summer.
We came back to Elgin, IL because of Will becoming ill, where our friends and relatives are. We did recoup some of the money he spent and I am grateful for that.
Sometimes he looks at me and I wonder who he sees.

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@janet7

Will works hard with various projects but he doesn’t walk much. We are fortunate to have YMCA membership from his company which includes the basics for us. I love the pool and there is a track for walking and that is all we need. There are sitting exercises in our park and I will look into that for us.
I have some examples of his Dementia:
For many years, He had a favorite spoon he would use to eat his cereal or ice cream. After our last move, he doesn’t want that spoon anymore. He uses an entirely different spoon.
He always loved Butter and we always had it on the table. Years ago, he used to eat margarine with Olive Oil and is what he uses now.
He still has his “heart” pillows from his heart surgery in 2014 - he has to have those! One night I thought he was holding a cat toy - we used to have a cat he loved.
I am finding many likes and dislikes changing in him very often and I just go along with them. I notice how many times he goes back to where he was years ago. Sometimes his choices are just different from any I am familiar with. He is very adamant about what he likes or doesn’t remember or that “he never said that.”Our communication is getting poor with his hearing problem and his low mumbling. Going to a hearing specialist next week and also our favorite Neurologist who we haven’t seen for 3 years because we moved to North Carolina.
It wasn’t a good move for me, no family or friends, and a few nice neighbors., no real friendships.
Will was in his glory, working on our acre property and older home, which needed everything. He was buying everything he needed or lost? regardless of cost. Thousands and thousands of dollars gone!
And this is a new one for me: The other day, I heard him ordering something from Lifeline and he seemed to understand what he was doing. When the unit arrived, he didn’t remember ordering it and so it needs to be returned - $500 worth plus monthly charges. If he had wanted to keep it, I would have, but he didn’t remember anything about it, so I canceled and sent back the unit, hopefully with a refund. Some day we may need this help, but not yet. This was a new one for me and something I’ll be more aware of in the future.
In the meantime in NC, I was so lonely and with COVID, didn’t go to church or join a woman’s club. Bugs and snakes everywhere - had exterminators but did not get rid of black ants.
The people in general were very friendly but I never got to know them. We were living in the middle of a forest and was it quite beautiful but HOT in the summer.
We came back to Elgin, IL because of Will becoming ill, where our friends and relatives are. We did recoup some of the money he spent and I am grateful for that.
Sometimes he looks at me and I wonder who he sees.

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Thank you for your Hug, Trish. Very much appreciated. Jan Lux

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My partner, Ron, has been on Aricept for nearly 2 years, 10 mg per day. He seems to be slipping so his doctor added an Rx for another 5 mg at night. It seemed to help him for awhile. Now I’m not so sure. How do I know when to request a change of medicine? Ron has become more angry & more confused lately, though I don’t know if it’s due to his meds. He has noticed that we are not communicating well any more, after 20 years together, but he chooses to blame me & is now frequently telling me he is going to leave me because he doesn’t feel a connection to me anymore more. Suggestions, anyone?

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@bonnie48

My partner, Ron, has been on Aricept for nearly 2 years, 10 mg per day. He seems to be slipping so his doctor added an Rx for another 5 mg at night. It seemed to help him for awhile. Now I’m not so sure. How do I know when to request a change of medicine? Ron has become more angry & more confused lately, though I don’t know if it’s due to his meds. He has noticed that we are not communicating well any more, after 20 years together, but he chooses to blame me & is now frequently telling me he is going to leave me because he doesn’t feel a connection to me anymore more. Suggestions, anyone?

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Hello, @bonnie48 I'm Scott and while I'm not any kind of medical professional, I was one of my mother-in-law's caregivers during her fight with dementia. I was also my wife's caregiver during her war with brain cancer during which she had multiple dementia-mimicking symptoms. I also worked in the research department for the national Alzheimer's Association. I'm sure your partner's doctor knows far more about this than I do, but here is what I know.

From what I know of Aricept, it is not a long-lasting drug nor does it have universally similar effects for patients. I also recall it works to assist patients remain on a plateau and retard their future declines with their disease and isn't a curative drug. Therefore it would seem likely its effectiveness would decline over time.

Especially with my wife, I kept a journal so I could track her medicines, dosages, and changes in her daily activities, mood, etc., and reported those to her medical team. Over her journey, her medications were adjusted dozens of times.

Some of the symptoms you describe also seem to be similar to those of other patients with advancing dementia.

How long ago was your partner diagnosed?

Strength, Courage, & Peace

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@bonnie48

My partner, Ron, has been on Aricept for nearly 2 years, 10 mg per day. He seems to be slipping so his doctor added an Rx for another 5 mg at night. It seemed to help him for awhile. Now I’m not so sure. How do I know when to request a change of medicine? Ron has become more angry & more confused lately, though I don’t know if it’s due to his meds. He has noticed that we are not communicating well any more, after 20 years together, but he chooses to blame me & is now frequently telling me he is going to leave me because he doesn’t feel a connection to me anymore more. Suggestions, anyone?

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Bonnie
My wife of 50+ years had similar issues with Aricept and it did not seem to be helping her memory and it’s one reason why she stopped it. She is still on Memantine without any side effects.
Last week was she had a visit with her neurologist and he said there are no new drugs that he would prescribe to his patients because their effectiveness is less than 5% and the side effects can be dangerous. He also said he does not know why the FDA would approve these drugs!

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My wife has been dealing with significant anxiety lately. I’ve called her primary care doctor multiple times and left messages about anxiety but haven’t received a callback. I drove to the office and was told it can take at least two weeks for a call back but they had no response when I said it’s been a month, other than the doctor is busy. I went to the local pharmacy and asked the pharmacist what he would recommend for an herbal anxiety medication. He walked me over to the herbals and pointed to Ashwogandha root xtract. Than he said that’s what he takes when he’s stressed.
I bought a bottle and I was pleasantly surprised that it worked great for my wife and without any side effects!
I’m glad my wife’s neurologist is not a “pill pusher “ but it does bother me when he said it’s best for her primary care doctor to prescribe anti-anxiety medications. But then the primary care Doctor is so busy, she can’t return a phone call

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@IndianaScott

Hello, @bonnie48 I'm Scott and while I'm not any kind of medical professional, I was one of my mother-in-law's caregivers during her fight with dementia. I was also my wife's caregiver during her war with brain cancer during which she had multiple dementia-mimicking symptoms. I also worked in the research department for the national Alzheimer's Association. I'm sure your partner's doctor knows far more about this than I do, but here is what I know.

From what I know of Aricept, it is not a long-lasting drug nor does it have universally similar effects for patients. I also recall it works to assist patients remain on a plateau and retard their future declines with their disease and isn't a curative drug. Therefore it would seem likely its effectiveness would decline over time.

Especially with my wife, I kept a journal so I could track her medicines, dosages, and changes in her daily activities, mood, etc., and reported those to her medical team. Over her journey, her medications were adjusted dozens of times.

Some of the symptoms you describe also seem to be similar to those of other patients with advancing dementia.

How long ago was your partner diagnosed?

Strength, Courage, & Peace

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Thank you, Scott. Ron was diagnosed with epilepsy in 2017 and Alzheimer’s in 2019. His current neurologist is an Alzheimer’s researcher at a major university plus member of an interdisciplinary team of epilepsy & dementia doctors, PTs and OTs.
Ironically, I have a PhD in cognitive psychology & taught memory & decision making courses during my grad school years. And now I am re-learning the same information from a practical, personal point of view.

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@tunared

Bonnie
My wife of 50+ years had similar issues with Aricept and it did not seem to be helping her memory and it’s one reason why she stopped it. She is still on Memantine without any side effects.
Last week was she had a visit with her neurologist and he said there are no new drugs that he would prescribe to his patients because their effectiveness is less than 5% and the side effects can be dangerous. He also said he does not know why the FDA would approve these drugs!

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Hi Dan,
I was educated as a memory researcher & teacher, & had also concluded that the new drugs being advertised & sold for lots of money may be no more effective than the older ones our partners are taking. One of the hardest things about dementia is accepting that my partner won’t get better. I hear or read the words, think I understand, but my heart doesn’t truly take in the message.

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