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Old 09-19-2011, 11:32 AM   #1
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Question on Namenda withdrawal...

Hi, I'm new to board and hoping to get some good information to my question on Namenda.

My mom is 89 and has advanced dementia. I'm her daughter and caregiver. About 4 weeks ago the doctors and I agreed to take mom off the aricept and namenda as I didn't see any need for it any longer. The doctor said we could always put her back on it.

About 3 weeks later mom changed dramatically for about 2 days. Where she never talked she talked constantly, incoherent though, and some hallucinations. On the 2nd day and after speaking with her doctor we started her with hospice. We agreed to put her back on the aricept and namenda. Along with 1 pill that night, she's been on no new medication.

Here's where my thinking is at. Could the withdrawal from the namenda lead to the change in behavior? Since she's been back on it she's been sleeping a whole lot and now about a week later I find her sleeping heavy and little responsiveness.

I read about namenda, of course now, it says starting dosage is 5mg, for a week, adding 5mg gradually until 10 mg 2 times a day. Well when I started giving her namenda again after a month the dosage was as was, 20 mg a day (10mg 2 times a day).

Is it possible that the sleepiness we are experiencing is a result of too much namenda? I realize you can't diagnose.

I'm fairly self relient and don't call for help unless needed. Are we in an over medication situation? Should this be addressed. I have a nurse coming tomorrow so I don't see anything critical.

I'm just hoping for information from someone who has good knowledge of Namenda use.

Thanks for any informationm you can give.
Kathy

 
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Old 09-19-2011, 01:50 PM   #2
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Re: Question on Namenda withdrawal...

Kathy,

I am not a medical person. As far as I know, these drugs such as aricept and namenda do make the person perceptive. My FIL has stage 7 AD and he is 90.
Back in late 2006, he started aricept. That gave him loss of appetite so we stopped the drug right away so he could eat and told the doctor. The GP stopped it. The GP is not a fan for this kind of drugs for Alzheimer's, so my FIL as a former pharmacoloigist asked the GP for namenda and exelon later in 2007. He had taken these 2 drugs for a year and half until the fall of 2008. The doctor stopped the drugs altogether because he was too confused in the morning.

Overall, we don't see anything funny after he stopped these drugs. We only saw the side effects. The fact was he was more perceptive. However, this does not change the difficulty of caregiving due to his confusion. His disease has been declined continuously.

I would say your mother's situation is probably due to the decline of the disease. It goes down slowly like every 6 months or 1 year when we saw the difference. Also, note that how the caregiving is done gives great difference of the outcome. e.g., if we argue with him, he would be more upset. If we agree with him, he would be happy. If there were outings every day by the lake, he was happy. This year he stopped walking and is taking antipsychotic drug.

Frankly as we discussed this before in the board: this kind of drugs for dementia don't really work in later stage. This is no cure. The perception only creates more trouble as my FIL continues to think delusional thoughts.

Please don't worry too much about it. It may be the way the disease is. I think she lost weight first and had problems continuously. These are the signs of late stage. I am sorry that she needs hospice.

Hugs,
Nina

Last edited by ninamarc; 09-19-2011 at 02:00 PM.

 
Old 09-19-2011, 02:24 PM   #3
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Re: Question on Namenda withdrawal...

Kathy, it is so difficult to tell the direct cause and effect in a loved one with Alzheimer's. If she perked up 3 weeks after stopping the medication... this is just the opposite of what should be expected. The medication is supposed to make her more alert not less alert. What you are seeing just doesn't make sense in relation to the dementia drugs.

Mom took a definite downward spiral when she went off these medications. During a relatively short period of time she was taken off both medications, two of her other medications were changed, the facility attempted to separate Mom and Dad, and then they were moved to a new facility. Not to mention chronic recurrent UTIs and a trip to the geriatric psych unit with more medication changes. So yep she had a definite downward spiral when she went off these dementia medications but was it due to the medication or something else that happened? I will never know

What makes it even more difficult is the normal ups and downs of this disease. Yep, Mom took a definite decline but that was 2.5 years ago and she has plateaued for most of that time with a gradual decline since then. I swear she has done better off the meds than she did the 2.5 years on the meds. There are good days when she actually makes sense and other days when she just jabbers nonsense. She just spend a week being very lethargic but the last two days she has been alert and on the go. Such is the nature of the disease.

The other point.... when Mom was taken off both medications her MMSE score was 7. The psychiatrist would not put Mom back on the medication for two reasons. With a MMSE that low he didn't think it was prudent. Also when you take them off, if there is a decline, you do not get a return to previous status if you start them again. The best you can hope for is a decline from where they are at the time they started the last time. Remember, it is not giving them a cognition boost, it only has the possibility of slowing the progression.

I would check out any other medical or physical changes that have taken place. It truly sounds like the reverse of what should be expected. That is why I would suspect something else going on. If she has not been checked for a UTI... that would be the first thing I would check for

Love, deb

 
Old 10-07-2011, 08:31 PM   #4
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Re: Question on Namenda withdrawal...

Hi Kathy,

How is your mom? Is she still back on the 10mg Namenda 2x a day?

My dad is also on Namenda, 10 mg once per day (even though he was prescribed 20 mg). He is starting to have some scary hallucinations regarding men with guns coming into his AL apartment. I am thinking they're being caused by the Namenda and thinking about requesting the doctor to take him off of it.

My thinking is that being forgetful is safer than being scared. However, I don't know if it's due to the Namenda or not and if the hallucinations will subside. At the same time, I'm very concerned about him getting kicked out of his AL.

Makes it hard to sleep at night, doesn't it? ;O

gogo

 
Old 10-08-2011, 06:47 AM   #5
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Re: Question on Namenda withdrawal...

Hi, thanks for all the replies. It's been about 2 1/2 weeks since my post. We left mom off the namenda and aricept as it was obvious she was over medicated by restarting at the 20mg dosage for over a week. We decided to get her off a couple of days or until it seems it was starting to wear off again. Honestly, it took almost a week but I could tell a difference. She became more alert and agitated, though not necessarily in a bad way. We began her back on 5mg a day for 7 days and right now she's on 10 mg a day. I really think it's working ok. meaning she's still sleeping a lot but not as groggy. We're not putting her back on the aricept at all.

So for now we're about as stable as can be expected for an advanced dementia condition. I expect each day to possibly bring something new, and handle the ups and downs.

Thanks again for all the input and I'm also glad to share any of my experiences with my mom's condition as her caregiver.

Kathy

 
Old 10-08-2011, 08:27 AM   #6
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Re: Question on Namenda withdrawal...

Quote:
Originally Posted by gogo548 View Post
Hi Kathy,

How is your mom? Is she still back on the 10mg Namenda 2x a day?

My dad is also on Namenda, 10 mg once per day (even though he was prescribed 20 mg). He is starting to have some scary hallucinations regarding men with guns coming into his AL apartment. I am thinking they're being caused by the Namenda and thinking about requesting the doctor to take him off of it.

My thinking is that being forgetful is safer than being scared. However, I don't know if it's due to the Namenda or not and if the hallucinations will subside. At the same time, I'm very concerned about him getting kicked out of his AL.

Makes it hard to sleep at night, doesn't it? ;O

gogo
Gogo,

I don't think it is namenda that gets his hallucination. Hallucinations may be part of his dementia. Probably the doctor should give him some antidepressant or antipsychotic drug with low dose. My FIL in stage 7 of Alzheimer's now takes low dose of antipsychotic drug or he would be combative.

Drugs like aricept or namenda don't give the patient Alzheimer's or dementia symptoms. At best, they are either useless/perceptive or cause side effects physically such as loss of appetite or too much confusion.
If you stop the namenda, it should be Ok. But try antidepressant - this kind of drug treats the psychotic symptoms.

Hugs,
Nina

 
Old 10-08-2011, 09:45 AM   #7
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Re: Question on Namenda withdrawal...

Thanks Nina,

But my dad is already on an anti-depressant. He takes Citalopram. It's a low dose. When my mom died, he continually expressed thoughts about killing himself. He mentioned driving down to the beach and jumping in the ocean and that he would keep on swimming. He no longer drives now and he hasn't brought up suicide in about a year.

The hallucinations seem to pretty much occur at night. Although he still believes them during the day. I started phoning him when I know he's just falling asleep. I sometimes have to do this with my young daughter to stop her from falling into a night terror. I wake her up before her REM sleep gets too deep. I wonder if jostling my dad as he falls asleep would help with his "scary" sleep cycle. I don't know.

Thanks again,
gogo

 
Old 10-08-2011, 09:54 AM   #8
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Re: Question on Namenda withdrawal...

Gogo,

My FIL also wanted to die. Well he was depressed after his late wife died in 2004 but he was able to continue to find a lady friend and mistook the lady caregiver as his wife and etc. Finally in 2009 he seemed to get the wrong concept from the hospital that people can kill him like that, so he came home saying he wanted to die although he accused people for wanting to kill him in the hospital telling everyone that they are liars and liars!!

Last year he still talked about death so he was given the same antidepressant like your Dad's. It helps because he is in a residential home with attention.
Maybe being home alone makes him afraid. Also pull up the curtains. He is afraid of darkness and there is sundowning. The more light, the better.

If it does not work, try to add antipsychotic drug. My FIL has that in order to make sure he does not get combative when people help him with toileting (he is in stage 7.)

Talk to the doctor about it. Maybe he needs someone next to him near his bedroom. We did that at home but it was expensive for 24 hours home care!

Hugs,
Nina

Last edited by mod85; 10-08-2011 at 07:37 PM.

 
Old 10-08-2011, 10:42 AM   #9
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Re: Question on Namenda withdrawal...

Quote:
Originally Posted by gogo548 View Post
Hi Kathy,

How is your mom? Is she still back on the 10mg Namenda 2x a day?

My dad is also on Namenda, 10 mg once per day (even though he was prescribed 20 mg). He is starting to have some scary hallucinations regarding men with guns coming into his AL apartment. I am thinking they're being caused by the Namenda and thinking about requesting the doctor to take him off of it.

My thinking is that being forgetful is safer than being scared. However, I don't know if it's due to the Namenda or not and if the hallucinations will subside. At the same time, I'm very concerned about him getting kicked out of his AL.

Makes it hard to sleep at night, doesn't it? ;O

gogo
I wrote a reply several hours ago but maybe I didn't submit it properly.

Mom was put back on the full dose of Namenda (20mg) after being off it for 3 - 4 weeks. It became apparent she was overmedicated and after about a week we took her off it again. The plan was to wait a few days for it to get out her system and start her up again at the 5mg dose. That's what we did. Right now she is at 10mg a day, 5mg 2 times a day. I personally think it's working ok. She's sleeping lots but not nearly as groggy as she was. She seems to be more stable for now. I expect days of change and up and downs. For now, we seem to be somewhat stable.

Mom is no longer taking aricept. I read more threads on this subject here and mom had the runny nose watery eyes for the last few years too. Everyone always said it's allergies. But since I read this I'm realizing these symptoms have diminished along with the removal and decreased dosages of aricept and namenda. I have no idea if there is a relationship but it sure is coincidental. I think we all learn through the experience of others.

Thanks for all the replies and I'm happy to share any experiences we've had or have.

If my first reply gets posted, ok. I think this one is similar but somewhat different.

Kathy

 
Old 10-08-2011, 06:23 PM   #10
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Re: Question on Namenda withdrawal...

Hi Kathy,

I can only tell you of our experiences with the drug. My mom was on the same dosage as your mom for several years. She never had any adverse side effects from it. We finally took her off the drug last February. I was shocked at how quickly it did change her condition. Namenda kept her from getting worse fast, so when we took her of it, she immediately changed. She stopped walking and talking...From February to late March she wasn't doing any of that any longer. She died July 29th. I won't/can't say it is because we stopped Namenda but I can say that the drop off without the drug was quite apparent. And to tell you the truth. It is ok. I did not want to keep her suspended indefinitely in the phase she was in.... it allowed the disease to progress at its own pace without anything blocking its way.

Love, Meg

 
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Old 10-11-2011, 01:41 PM   #11
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Re: Question on Namenda withdrawal...

Hi everyone!

Dad now also believes that there are mice all over the place. Well, I guess there always IS the possibility that there ARE mice, but, he also claims they are in the freezer of his fridge??? I was there this weekend and didn't see any mice. ;O

Anyway, I finally was able to communicate with his GP's nurse today. The doc has ordered that he stop taking the Namenda. Well, I guess that's that.

The nurse confirmed that a possible side effect of Namenda IS indeed hallucinations. Therefore, I feel like we are doing the right thing.

I'll see what the neurologist says next week and then follow up once again with the GP.

I guess I gotta prepare for Dad to start forgetting more. I don't know how much longer he'll even recognize me??? Although, I guess there's no telling whether or not that will happen. ugh

But, I feel that I have to make the decision that it's better to take him off the Namenda than him living in fear.

Thanks again,

gogo

 
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Old 10-11-2011, 02:57 PM   #12
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Re: Question on Namenda withdrawal...

Gogo,

It is good the nurse and GP will do this for your Dad.

Well. I am not sure what namenda can really do if you take it. Megan mentioned that maybe stopping namenda would make the person decline right away. I doubt it. From what I saw, my FIL still took namenda in 2008 in April, but he forgot his elder son (who never visited) in Europe in that spring.
He stopped namenda in Sept., 2008. Then he got into some heart failure issue and had nose bleeding. I think he just happened to decline that year. Namenda didn't really stop the decline. Namenda may only delay the whole thing by 6 months and it cannot stop the severe decline in late stage.

Your Dad will always find you familiar. Well it is not obvious. You need to ask him if he remembers your childhood or your job in the future. It is going to be on and off, somehow he won't forget you in general. Even with the label daughter, he will know. He just would not understand what daughter or son really means.
My FIL is like that. He still knows my husband's name. But he really prefers him to be his colleague (which is not true.) He forgot my husband's childhood back in 2009 or so (I asked him in the park - I thought he liked those kids in the playground.) Once he asked who I was coming from downstairs. Once in 2008/2009, he asked me how he should behave for his son. He asked me if my husband is his son. One time he told my husband that he was his best friend in 2008/2009. Then my hubby told him he is the son, then my FIL said, oh, you are my son!

It is not like he won't know you totally. It is a bit tricky. He will totally forget about you in end stage probably. But he will always know you are the familiar one who comes all the time. Don't worry too much about it.

Hugs,
Nina

Last edited by ninamarc; 10-11-2011 at 04:06 PM.

 
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Old 10-11-2011, 04:04 PM   #13
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Re: Question on Namenda withdrawal...

This is a bug here. I always ended up with this kind of error. I just wanted to edit and it gave me reply!!

Last edited by ninamarc; 10-11-2011 at 04:07 PM.

 
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Old 10-11-2011, 05:25 PM   #14
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Re: Question on Namenda withdrawal...

It is so difficult to know the cause and effect especially when each person responds to a medication differently. To truly know a cause and effect you have to maintain stability except for the one item you change. Then you have to patiently wait to see if the changes maintain. It is not unusual for it to take a week or as much as a month to get a medication stabilized in or completely out of the system.

Dad took Namenda but his hallucinations were a direct function of his Vascular Dementia and grew worse when he was in A-fib. He declined rapidly when the Namenda was stopped, and his delusions increased, but he was also battling heart disease and various other vascular problems. Was there any of the decline related to stopping the Namenda... I don't know. Were there other reasons for his decline... YES!

Mom took a decline after stopping the Aricept and Namenda as well but there were also other extenuating circumstances that could have caused the decline as well. There was a failed attempt to separate Mom and Dad, she had recurring UTIs, her psych medications were changed frequently, she had a stomach virus and the flu, and she moved to a new facility. Any of the above could have been a part of the decline including the anxiety and stress she experienced during this time. I will say after her anxiety and angst were treated properly with psych meds, the UTIs cleared up, and her life stabilized, her decline has slowed dramatically despite the fact that she is not on any memory medication.

Mom's psychiatrist that treated her for her angst did tell me that you might notice a decline after stopping the memory medication... if they are doing any good. But most likely the decline is related to something else and not the medication. He also went on to say that if you stop and start again it will not take them back to a previous level but only slow progress from where they are at the moment. The earlier your loved one is diagnosed in this disease the more effective these medications are. The problem is that most dementia patients are not diagnosed until mid or late stages. Mom was functional at home with Dad until she was in late moderate to sever stages of dementia. At this point these medications were only maintaining her in a stage of the disease that caused her the most angst. It is up to us as care givers and loved ones to decide if it is better to prolong where they are at this point in time. For me and my parents... managing their emotional well being was much more important than maintaining what fuzzy cognition they had at the time of diagnosis.

I have never heard of Namenda or Aricept causing sedation. It is more likely that it will cause agitation or confusion. That is not to say it is not possible

There is way too much NOT known about these memory medications and too much hype around them. Yet there is very little being done about the emotional distress, depression, angst, agitation, combativeness, hallucinations, delusions, and other psychiatric symptoms. I saw an interesting statistic lately. The majority of loved ones placed in a care facility are there, not because they can not brush their teeth, walk, or talk, but because of behavioral problems

Love, deb

 
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Old 10-11-2011, 09:03 PM   #15
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Re: Question on Namenda withdrawal...

Thanks Nina,

What you said really helps. It really does.


Thanks Gabriel,

I appreciate all of your input. You are so right. All I can do is hope that withdrawing the Namenda will keep him from having scary (or creepy) thoughts. He is now convinced his apartment has mice. As in crawling on him, etc.

The number one priority is his safety. I can only hope that the scary thoughts will subside. Road to forgetfulness, here we come.

Hugs,
gogo

 
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