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Medical Forum / Diseases and Disorders / Alzheimer's / April 2004

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Memantime Experience

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Bob Bendick - 30 Mar 2004 16:54 GMT
I'm new to this board.  What I've read here has been helpful and
interesting.  I'd like to first give some background about my family's
involvement with Alzheimer's, then our experience with Memantine and,
finally, some specific questions about your experiences with
Memantine.

My mother, 89, has been diagnosed with Alzheimer's and is somewhere
between the moderate and severe stages of the disease.  She lives with
my father, 91, who is a 24/7 caregiver, in good health and the object
of our family's concern. They live in independent living in a large,
beautiful retirement facility.  My mother sometimes thinks her husband
is her father, sometimes thinks she has an infant child, thinks her
long since deceased parents are still alive, still thinks she is on
vacation and will be going home soon, has a memory span of between 15
seconds and 5 minutes, etc., etc.

Our experience with Memantine has been mixed.  My mother has been on
Aricept for around 3 years and continues taking 10mg daily.  Their
doctor, at the retirement facility, prescribed Memantine back around
mid January, after my father gave the doctor my printout on Memantine
from WebMD.  (The Doctor had not heard of Memantine, which I thought
was strange, but that is a another story.)  They followed the well
devised instructions and slowly ramped up the dosage from 5mg to 20mg
daily over a period of about 4 weeks.

We have noticed that my mother is more aware but we (my Brother and
Sister) are not sure if that is a good thing, especially for my
father.  The increased awareness has made her more aware that
something is wrong with her, she questions my father more and is
generally more confused about everything.  It is making life more
difficult for my 91 year old father/caregiver.

Starting about about 2 weeks ago (8 weeks after starting Memantine)
she has had occasional bouts of diarrhea (about 3 times a week ) that
she can not control, which is very physically demanding on my father.
Last week the Doctor said to reduce the Memantine from 20 to
10mg/daily, but, from what I've read,  Memantine is more likely to
cause  constipation than diarrhea. Yesterday was the first time she
ever had major accidents with urination.  I'm not sure if the sudden
incontinence is related to the Memantine or something else, such as
the natural progression of the disease.

My question to you.  Has anyone else observed an increase in diarrhea
or incontinence after starting Memantine?   I know that some here have
written about an increase in confusion which very closely parallels
our experience, so I know that is not abnormal.

Our objective in starting Memantine was to make things easier for my
father, especially since Memantine was supposed to prolong the time
the patient could take care of them self, i.e. toileting, etc.  So far
our experience has not been positive.  I would like to have my mother
continue on Memantine for 26-28 weeks and match the length of the
studies, thereby hoping to see the full positive effect of the drug.
However, the increased mental and physical hardship on my father may
cause us to stop giving the drug to my mother.

Sorry about the length of this post. I hope the details are more
relevant than boring.

Bob
Beth - 30 Mar 2004 17:20 GMT
Bob,  Your described experience with Memantine parallels what is happening
at my MILs ALF.  I had a discussion with the director last week (I'm in
healthcare and we regularly chitchat) and she reports that several of the
residents are coming back from their MD appts with memantine added to their
meds- usually at request of family, but sometimes not.
She's finding that at 4 days, behaviors change with more agitation, anxiety
and physical acting out.  This is requiring more staff interventions
including more intense efforts to limit assault-type behavior.  She was
planning to consult with the medical director about developing a policy for
managing this situation-where the family gets informed that additional
care/charges might be needed with the use of this drug.
So far, she hasn't seen that the use improves their function in that
specific environment.  She suspects that the increased awareness causes
these behaviors-and it may not be in the resident's best interests at the
stage they're in.  Keeping someone at home is likely a different set of
issues as the patient may be functioning at a higher level.

I have no suggestions, but considering the effect on your Dad is certainly a
valid consideration.

Beth
Gwen Love - 31 Mar 2004 00:53 GMT
Bob, so glad you found us and hope we will be able to be very helpful.  I
can't help with the Memantime issue since it wasn't available when my
husband was alive.  I know you must be worried about your dad; hope you can
work out something to help him.
Gwen

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| I'm new to this board.  What I've read here has been helpful and
| interesting.  I'd like to first give some background about my family's
[quoted text clipped - 56 lines]
|
| Bob
Jennie - 01 Apr 2004 07:02 GMT
Bob,

My mother is in a similar situation to yours.  She took Aricept for about 3
years and is still on it.  Is now taking memantine, but not for quite as
long as your mother.

My mother has reached the stage of incontinence (both urinary and fecal)
within the past month.  When you say your mother has bouts of diarrhea, do
you say that because she claims she had an accident because it came on so
fast (therefore, it's diarrhea), or because it actually looks like diarrhea?
(sorry to get graphic...)

I know that my mother realized that she was becoming incontinent and was
upset because she felt that something was wrong.  We talked about it and I
told her it was OK, we all understood she couldn't help it, and no one was
blaming her.  Somehow, that seemed to ease her mind.

It is amazing how fast she moved into the incontinent stage.  Several
"stages" have happened to my mother in the past 3-4 months that came on very
fast, and the sudden onset really does make it hard to tell what the cause
was (she was trying some new medications, memantine among them, and some new
behaviors coincided with new medications).  But looking at things over the
past 14 months, she has continually been declining fairly rapidly, and when
you look at the big picture, it put the new behaviors in context.

We have not yet really noticed an improvement in mental functioning due to
the memantine.  However, my mother has just started to reengage in some
behaviors that had disappeared: wanting to "go home", moving furniture and
things around the house,e tc..  Like your mother's situation, this may be an
unfortunate effect of increased awareness.

Good luck with your situation.

Jennie

> I'm new to this board.  What I've read here has been helpful and
> interesting.  I'd like to first give some background about my family's
[quoted text clipped - 56 lines]
>
> Bob
Bob Bendick - 04 Apr 2004 22:07 GMT
Beth, Gwen and Jennie, thank you for your replies.  I appreciate them.

Beth, it is interesting to hear that the medical community is
observing some combative type behavior resulting from Memantine.  I
guess the value of Memantine really depends on the individual stage
and situation.

Gwen, thanks for welcoming me to the board.  I hope your husband went
quickly and painlessly, as I hope my mother will.

Jennie,  it's frightening to hear how quickly you mother moved to the
incontinence stage.  My father finally talked to the Doctor, who said
that there is a lot of diarrhea going around due to some virus.  So
hopefully, that's all it is.  The Doctor also said to stop the
Memantine and Aricept for about 3 day.  The Diarrhea seems to have
slowed but not stopped.  (And, yes, to your excellent question, it
really is diarrhea, graphically speaking.:)

I don't know if we will continue with the Memantine.  We'll see what
the Doctor says.  The Doctor did tell my father that Memantine should
not cause diarrhea.  I'm encouraged the Doctor seems to have done some
research on Memantine.

Thanks again to all of you,

Bob
Mary Morken - 06 Apr 2004 23:19 GMT
My husband (age 60) has been on memantine 12 weeks.  At first he
suddenly could make decisions again and did so without my knowing it,
which gave me some challenges but I was so thrilled to see him able to
plan something to do that I adjusted quickly.  However, I did finally
ask him to tell me when he planned something!

He was also able to talk about his own memory loss a bit which he
rarely has done over the last 3 years.  And the other day he said, "We
aren't working very well together right now."  He's not made that kind
of statement in a very long time.

The greatest help I see memantine giving is in his being able to make
decisions and take initiatives.  He is still in early stages and very
functional.

I read a study of memantine that showed that it gives improvement for
12 weeks and then they start a slower decline than before, and get
back to their baseline of when they started the study at about 6
months.  So, I'm trying something:  I've only given him 10 mg qd and
I'm going to increase up to 20 mg over the next 2-3 weeks and see if I
can keep him on the improving scale.  I don't know if it will work,
but since he is still mild I thought using only half a dose might be
smart.  He has also been on Reminyl for 3 years since the day it was
on the market.  I saw improvement with that too.  And I know the
antidepressant he is on really helps him control his emotions and not
have "catastrophic reactions" too.

Hope this helps.  Caregivers in an institution might find patients
easier to care for if they didn't take initiatives, if they were less
self-aware.  I say, let's give the caregivers a challenge for the sake
of improved functioning in their patients.  -Mary Morken
mtdaily@aol.com
Darryl - 06 Apr 2004 23:39 GMT
I'm glad to hear of your success with memantine.

>I read a study of memantine that showed that it gives improvement for
>12 weeks and then they start a slower decline than before, and get
>back to their baseline of when they started the study at about 6

I didn't realize that any were completed (i.e., at the time of the
JAMA paper, the other long-term studies, I thought, were on-going).
Would you happen to have the reference?  

>months.  So, I'm trying something:  I've only given him 10 mg qd and
>I'm going to increase up to 20 mg over the next 2-3 weeks and see if I

When I first read this sentence, I saw qid as opposed to qd.  Yikes!
(quotid or qd = every day for anyone who's interested).  Are you
titrating up from 5 mg?  

>can keep him on the improving scale.  I don't know if it will work,
>but since he is still mild I thought using only half a dose might be
>smart.  He has also been on Reminyl for 3 years since the day it was

Assuming memantine lessens the havoc wreaked on the acetylcholinergic
nervous system, the sooner the maximum dose is reached, the better
IMO.  

Darryl.
Mary K Farrell - 07 Apr 2004 03:47 GMT
 Hey, Darryl:
 How come you're so doggone smart?! My understanding of Memantine is the
same as yours. Also, yes, the sooner you can titer up to the full dose, the
better.
 By the way, I did purchase another supply of Memantine/Axura from the
pharmacy in Zurich. Guess what? Within 5 days after George started taking
that new supply, his mental capacity improved. Last MMSE was back up to 24.
Even the neurologist was surprised by that! We're now waiting to see if the
pharmacy in Zurich can decypher what may be the difference between the two
pills. Hopefully, we'll have a true answer some day soon.
 Soon as I hear anything, I'll let you know!
 Mary K

 > I'm glad to hear of your success with memantine.
 >
 > >I read a study of memantine that showed that it gives improvement for
 > >12 weeks and then they start a slower decline than before, and get
 > >back to their baseline of when they started the study at about 6
 >
 > I didn't realize that any were completed (i.e., at the time of the
 > JAMA paper, the other long-term studies, I thought, were on-going).
 > Would you happen to have the reference?
 >
 > >months.  So, I'm trying something:  I've only given him 10 mg qd and
 > >I'm going to increase up to 20 mg over the next 2-3 weeks and see if I
 >
 > When I first read this sentence, I saw qid as opposed to qd.  Yikes!
 > (quotid or qd = every day for anyone who's interested).  Are you
 > titrating up from 5 mg?
 >
 > >can keep him on the improving scale.  I don't know if it will work,
 > >but since he is still mild I thought using only half a dose might be
 > >smart.  He has also been on Reminyl for 3 years since the day it was
 >
 > Assuming memantine lessens the havoc wreaked on the acetylcholinergic
 > nervous system, the sooner the maximum dose is reached, the better
 > IMO.
 >
 > Darryl.
Beth - 07 Apr 2004 00:37 GMT
>I say, let's give the caregivers a challenge for the sake of improved
functioning in their patients<

Mary,
As I previously posted, Memantine is not making it easier on the caregivers
in my MILs dementia-ALF.  First of all, it's pretty much a given that
they're more involved and further along if they're placed- thus "improved
functioning" can take them "back" to agitated, assaultive behaviors
requiring more surveillance to protect both themselves and other residents.
I think the issues for home caregivers can be different than institutional
caregivers in this area.  When the" improved functioning" in an otherwise
controlled environment results in increased agitation, lashing out, and
being obviously distressed-caregivers "meeting a challenge" cannot
necessarily calm them down or placate them.  At least that's what I've been
observing.....

I'm very happy Memantine has helped your husband.  The right medication at
the right time is a godsend, isn't it?  Unfortunately, it doesn't work the
same for everyone.

Beth
Evelyn Ruut - 07 Apr 2004 12:07 GMT
> >I say, let's give the caregivers a challenge for the sake of improved
> functioning in their patients<
[quoted text clipped - 17 lines]
>
> Beth

I am in agreement, Beth.   All the advancing stages of Alzheimers are not
necessarily on a grade of better/worse than others, and increased cognition
CAN mean putting the person in a "worse" state of mind.

Regards,
Evelyn
 
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