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Donepezil and Keppra
JSears
Posted: Sunday, August 2, 2020 4:45 PM
Joined: 4/2/2017
Posts: 7


My father has mid-stage Alzheimer's. He is having muscle spasms (myoclonus) more frequently. Last week, he had 5 muscle spasms during the day and 3 at night according to his caregivers. The spasms are sometimes violent and throw him off balance and he falls. 
His doctor has prescribed a low dose of Keppra. My question: do the benefits of Keppra outweigh the side effects? Drowsiness and behavior changes are the side effects. 

Another question: Do PWD  ever stop taking Donepezil (Aricept) ? What are the downsides of taking this drug? Does this drug just prolong the inevitable?

I am sad about prescribing more drugs. Does Donepezil help him anymore? Would like to hear about any experiences with going off Donepezil.


MN Chickadee
Posted: Sunday, August 2, 2020 5:23 PM
Joined: 9/7/2014
Posts: 1139


Donepezil tends to be tolerated and is not terribly expensive. Everyone reacts to drugs differently so YMMV. Some people report a decline after thinking the Aricept is no longer helping and stopping it, so we have left it alone and my mom continues to take it now in the final stages of Alz. At this point we don't really know if it's helping but don't want to find out. 

I found these videos by Teepa Snow explain the drug very well. I don't know why it's in two parts, but it's all I can find. Each of these links is part of her explanation and they are just a few minutes. The first explains what is wrong with the brain chemicals and the second explains what this class of drugs does to help at various stages of dementia. If your LO does not have side effects I personally would use it. 

 

https://www.youtube.com/watch?v=att5FBVx3Bk

https://www.youtube.com/watch?v=JJTfROLRunU

 

My mother had a seizure in the later stages of Alz. She had never had one before and it was a surprise. The doc started her on Keppra. The first couple weeks she was extremely drowsy and unsteady on her feet. After a few weeks her body adjusted and by a month side effects had gone away. Falling and/or a seizure are also not good for the body or mind (the seizure did cause mom to have a bit of a decline) so we have continued with the Keppra. As to whether benefits outweigh risks that is always tough in every step of this journey. It's important to have a healthcare provider you trust. You take their advice, do your research, trust your gut, and make the best decision you can with the resources and information you have at the time. 

DaughterOHIO
Posted: Monday, August 3, 2020 9:44 AM
Joined: 8/23/2017
Posts: 14


donzepil caused an allergy reaction with my Dad.  It also lead him to become borderline diabetic.  We are going back to a neurologist in a couple weeks.  It’s been 4 years, he needs to have some medication to help him have some sort of life.  I wish you well.
sjplegacy
Posted: Tuesday, August 4, 2020 3:19 PM
Joined: 12/26/2018
Posts: 5


Aricept may be effective in addressing symptoms in the early to mid stages of AD. It is not intended to be taken throughout the course of the disease. After about 1 yr., it becomes ineffective so there's no reason to continue it. Your doctor should know that.
MN Chickadee
Posted: Tuesday, August 4, 2020 4:25 PM
Joined: 9/7/2014
Posts: 1139


Donepezil (Aricept) is approved by the FDA for mild, moderate, and severe Alzheimers. My understanding is it is not completely understood when or how it might stop working in the later stages. I would prefer not to find out until my LO is actually near death.  When she qualifies for hospice we will end it. It's not actually prolonging anything, the disease is progressing as it will do no matter what we do. It's possibly making a person slightly more functional than they may otherwise be but is not slowing the progression of the disease at all. Others may disagree and want to end all healthcare other than comfort care depending on where their LO is at and that is perfectly valid.  One year can be a drop in the bucket with Alz. My mother has had it for nearly 15 years. It seems so much of dementia research is spotty and murky. What are your sources? It can be difficult to interpret what there is out there and figure out how to apply it to our LOs. JSears, if you use the search function you will find many threads on stopping Aricept. Some people don't notice a difference at all, others see a sudden decline that may or may not rebound after re-starting it. Like I said before, it's about doing the best you can at any moment in time. The answers are rarely easy or straightforward.
Michael Ellenbogen
Posted: Wednesday, August 5, 2020 8:29 AM
Joined: 11/30/2011
Posts: 3552


sjplegacy wrote:
Aricept may be effective in addressing symptoms in the early to mid stages of AD. It is not intended to be taken throughout the course of the disease. After about 1 yr., it becomes ineffective so there's no reason to continue it. Your doctor should know that.
That is false. 

BabyLee
Posted: Wednesday, August 5, 2020 2:59 PM
Joined: 6/28/2013
Posts: 6


Michael Ellenbogen wrote:
sjplegacy wrote:
Aricept may be effective in addressing symptoms in the early to mid stages of AD. It is not intended to be taken throughout the course of the disease. After about 1 yr., it becomes ineffective so there's no reason to continue it. Your doctor should know that.
That is false. 

Not trying to argue, but when my dad was diagnosed (about 2008), and before Aricept went generic, the manufacturer itself stated the drug was thought to be effective for about 3-4 years.

After it became generic, our Neurologist recommended we continue it since it did not appear to be causing any side effects. He could not say whether it was helping though.
 
Perhaps that has changed since the drug has been out quite a while now. My mother has been taking Aricept and Memantine (Namenda).

jfkoc
Posted: Wednesday, August 5, 2020 5:07 PM
Joined: 12/4/2011
Posts: 19292


We were never told that Aricept was only good for one year.
Michael Ellenbogen
Posted: Thursday, August 6, 2020 9:57 AM
Joined: 11/30/2011
Posts: 3552


This site really amazes me. They are so ready to delete when one person’s say something wrong like that is so critical. But should people inform others about the wrong medication information they consider that acceptable. When it really dangerous the just don’t care. That goes for the moderators and Alzheimers Association. You wonder why these folks even exist if they cannot help with issues related to dementia drugs. 


JSears
Posted: Thursday, August 13, 2020 1:30 PM
Joined: 4/2/2017
Posts: 7


Thank you MN Chickadee, that was super helpful to see the Teepa Snow videos. Sorry for the late reply, I got caught up in my Dad’s wound care, eczema, dentist and hay fever! Wow, no wonder I am tired. We will try the Keppra to see how he tolerates it. The muscle spasms have become more frequent. I am more apt to continue the donepezil now. I will have to get my Dad a new neurologist at Stanford. This will be his fourth neurologist.... they keep leaving! Thank you again!
Marta
Posted: Thursday, August 13, 2020 3:12 PM
Joined: 6/3/2013
Posts: 951


Anyone can Google donepezil for themselves and find that the FDA has approved it to be used now in all stages of dementia.

We on this board do not have to debate this when the facts are out there.

Michael:  it is not the responsibility of the AA to verify the accuracy of information posted on this site.  That responsibility lies with each individual member.  In the internet age, accurate information is not difficult to come by.


Marta
Posted: Thursday, August 13, 2020 6:34 PM
Joined: 6/3/2013
Posts: 951


Sjplegacy. I see this is your first post. Welcome. 

 


Michael Ellenbogen
Posted: Thursday, August 13, 2020 7:34 PM
Joined: 11/30/2011
Posts: 3552


Marta can you please send me a link to that. I have fought for many years to  bring this change as most were not aware of this. I even fought with the FDA and others. If they have changed what they said that is great and would like to see it. Thanks You made my day if this is true now. 


Michael Ellenbogen
Posted: Saturday, August 15, 2020 4:59 PM
Joined: 11/30/2011
Posts: 3552


Lane do you read this and is it true? I think you know the time I spent on this in the past, If not I can share the emails with you. 


Lane Simonian
Posted: Saturday, August 15, 2020 6:45 PM
Joined: 12/12/2011
Posts: 4854


Thank you for asking, Michael.  This is one of the thorniest debates around.  Aricept (donepezil) has been approved for all stages of Alzheimer's disease, but it likely only slows down the progression of the disease (at least in terms of cognition) for awhile during the early to middle stages.  

https://www.beingpatient.com/how-does-aricept-work-in-the-brain/#:~:text=Aricept%2C%20also%20known%20as%20Donezepil,one%20with%20more%20side%20effects.

https://www.brightfocus.org/alzheimers/article/do-alzheimers-medications-really-help

https://betterhealthwhileaging.net/faqs-medications-for-alzheimers-dementia/


Michael Ellenbogen
Posted: Saturday, August 15, 2020 7:37 PM
Joined: 11/30/2011
Posts: 3552


Oh well as I got my hopes up for nothing based on the persons remarks. I sent you a email on my work on some of this. Fell free to add comments based on what you read if you like. 
Lane Simonian
Posted: Sunday, August 16, 2020 10:09 AM
Joined: 12/12/2011
Posts: 4854


Thank you for sharing all this information, Michael.  I am just posting this to show how different people's experience with Aricept can be.  I cannot explain the reasons behind these differences.

https://www.drugs.com/comments/donepezil/for-alzheimer-s-disease.html


Lane Simonian
Posted: Tuesday, August 18, 2020 11:39 AM
Joined: 12/12/2011
Posts: 4854


This is just for informational purposes:

Current and Evolving Treatment Strategies for the Alzheimer Disease Continuum

August 17, 2020

Cholinesterase inhibitors and memantine do not change the progression of AD. In the 1-year AD2000 clinical trial, donepezil demonstrated slight improvements in cognition and function, but failed to delay institutionalization, reduce caregiver burden, or lower costs.54 Results of a recent Cochrane review of donepezil trials showed a mean reduction of -2.7 points on the Alzheimer’s Disease Assessment Scale-Cognitive (ADAS-Cog, range 0-70), but no benefit for behavioral symptoms, QOL [qulaity of life], or total healthcare resource utilization.55 This falls below the 4-point difference on the ADAS-Cog [Alzheimer's Disease Assessement Score-cognitive] that is generally recognized as clinically meaningful.56 AEs [adverse effects] with donepezil were dose related. In particular, donepezil 23 mg/day did not improve cognitive function more than 10 mg/day, but increased the risk of AEs and premature treatment discontinuation.55 In another recent Cochrane review, memantine demonstrated a small clinical benefit versus placebo in patients with moderate to severe AD, but had no benefit in patients with mild AD.57


In a systematic review that excluded clinical trials with a high risk of bias, cholinesterase inhibitors and memantine slightly reduced short-term cognitive decline.8 It was unclear if these effects are clinically meaningful. Cholinesterase inhibitors had a small mean improvement in cognition with a median standardized mean difference (SMD) of 0.30 (range, 0.24, 0.52). For function, effects ranged from no difference to a small improvement, with a median SMD of 0.19 (range, -0.10-0.22). Memantine did not demonstrate any benefit in patients with mild to moderate CATD [Alzheimer's type disease]. In moderate to severe CATD, insufficient to low-strength evidence inconsistently suggested that adding memantine to a cholinesterase inhibitor improved cognition, but not function.8

As part of the Choose Wisely initiative, the American Geriatrics Society recommends against prescribing cholinesterase inhibitors unless cognitive benefits and gastrointestinal AEs are monitored.58 A cholinesterase inhibitor should be stopped after 12 weeks if improvements are not observed on practical treatment outcomes reflecting stabilization of cognition that can be easily assessed. Patients and caregivers should be counseled about AEs before beginning a trial of cholinesterase inhibitors. Deprescribing of cholinesterase inhibitors has been linked to a reduction in falls and fractures, but not an increase in the risk of aggressive behaviors and antipsychotic prescribing in nursing home residents with severe dementia.59,60 Cholinesterase inhibitor AEs are often unrecognized and lead to a “prescribing cascade” that contributes to a treatment burden in patients with AD. For example, observational studies have found that patients receiving a cholinesterase inhibitor had an increased risk of receiving an anticholinergic drug to manage urinary incontinence, which is likely caused or exacerbated by the cholinesterase inhibitor.61,62

The article goes on to discuss some of the drugs currently being studied for the treatment of Alzheimer's disease.

https://www.ajmc.com/view/current-and-evolving-treatment-strategies-for-the-alzheimer-disease-continuum


PamGC
Posted: Saturday, August 22, 2020 9:19 AM
Joined: 5/1/2013
Posts: 1


I would like to add my experience with my mother with Aricept. She is been taking it for more than 10 years since she started to show early symptoms. Some months ago I discusses with her neurologist Assistant some issues like constant stomach and gastric problems. She told me that it was one of the side effects of Donepezil. She said it was hardly doing anything in terms of helping her so it was better stop it. We stopped it for about two months. At first everything was ok and her stomach problems recede. But around the time of two months we started seeing drastic declining in her. To the point of stressing me out. So I decided to start again the pill for at least a week and see. She immediately improved cognitively and more alert (like before when was taking it). I told the doctor Assistant and she considered that it was not the pill helping, it was just the normal up and down of Alz. The neurologist approved to keep giving it to her even though he considered the case of it having positive effects like that a very rare case. It does affects her tummy but I’m controlling it with enzymes, probiotics. But if by any chance is the pill having a positive effect, I prefer to take the chance.
JSears
Posted: Tuesday, September 1, 2020 11:40 PM
Joined: 4/2/2017
Posts: 7


Update: my Dad had a week of very low blood pressure (second number In the 40s and 50s)- also sleeping all the time. After tests in the emergency room, his PCP took my Dad off the Keppra. He is still taking the Aricept. He does seem to have loose BMs / diarrhea often. Still wonder if the benefits of Aricept outweigh the side effects.
 
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