RE: zyprexia

[Guest guest]

After being on it for approximately 3 days my Mom started to develop the

Parkinsonism type symptoms and she became ridged. Her head was actually

leaning toward her left shoulder and you could not straighten it out for her.

Mariea PA

[Guest guest]

After thought. Everyone is affected differently by medications. You should

keep a close eye on you Mom and watch for any adverse reactions.

Mariea

[Guest guest]

My dad has been on Zyprexia for about 2 yrs and seemed to do well with

it. In my opinion though, after a while, my dad seems to max out so to

speak, on meds., and they sometimes seem to lose their effectiveness.

So as recently as 2 weeks ago, a psychiatrist and myself decided to

lower to dosage and start dad on Zoloft for depression. We took him off

Paxil. Haven't seen a huge difference yet, but do know that with

anti-depressants it usually takes a good 2-3 weeks in the system to

notice a change. Again, as with all LBD people and meds., what works

for one may or may not work for another. Stay positive and keep us

posted.

Sandie

Des Moines, IA

[Guest guest]

,

My mother has DLB (Dementia w/ Lewy Body). I have over the last two weeks

really began to research medications and how they effect DLB. The reason I

became so concerned is that my mother had a near fatal reaction to Zyprexia.

I don't doubt some people have some " success " with this drug but I am going

to share with you what I wish someone had shared with me.

Zyprexia is in a class of drugs called Neuroleptics or anti-psychotics. It

has been well documented for at least 2 years that DLB people are very

sensitive to this class of medication (there is another class of drug you

should also avoid which I will talk about later). But even leaving that a

side for a moment, there are some serious side effects of any neuroleptic

drug that can be worse then the orginal reasons for using medication. I am

attaching two articles that I found while researching DLB and medications.

They are well documented articles by psychiatric doctors that deal with this

everyday.

You can form your own opinions after reading it but let me quote a few items

that are just shocking about neuroleptic medications.

" It(DLB) is considered to have a more rapid progression than pure AD however

in some patients the initiation of neuroleptic medication may be associated

with increased morbidity and mortality. "

" Neuroleptic medication, often a first line treatment of episodic confusion

and hallucinations is frequently administered to patients with dementia.

However, in patients with DLB, adverse reactions to neuroleptics have been

documented and these reactions do not necessarily revert upon

discontinuation of the medication. "

" Neuroleptic sensitivity in DLB consists of a rapid decline with severely

exaggerated extrapyramidal system, increased confusion and in 54% of one

group of patients with DLB, it precipitated a terminal decline with death in

2 to 19 weeks of drug administration. "

None of this information was given to us. We, like so many people, trusted

that the doctors were well informed professionals that knew what was best.

The withholding of this information in my opinion borders on criminal and

certainly is a major oversight by any medical professional who either

doesn't know it or doesn't pass it on to family members trying to care for

their loved one.

No doctor ever told me this but I beleive my mother had a reaction to

Zyprexia that is called Neuroleptic Malignant Syndrome. This can be FATAL.

This occurred in a Psychiatric Center with 24/7 psychiatric professionals.

They continued to administer this drug throughout the weekend and only

stopped when they saw the shock on our face when we visted our mother on

Monday afternoon. (By the way, we took her in on Friday afternoon and they

told us it would be better for her if we didn't visit over the weekend.) My

mother until this time, had always been able to walk. When we arrived she

was in a wheel chair, curled over to one side, drooling and in tremors. None

of this had she ever done before. Clearly she was having a serious reaction

to the Zyprexia but they seemed oblivious to any problems. I want you to

know the doctor, who considers himslef an expert in dementia and geriatric

psychiatry, was there throughout the weekend and continued to give her this

medication. This is just one example of what happens when you blindly trust

the " professionals " . I will never do it again. I have been forced to take a

very active role in my mothers care because I can not trust the medical

community. They simply are either not informed about DLB or unwilling to

deal with patients on an individual basis.

I don't want to scare you but to give you info that I wish I had been given.

If I had, my mother never would have been allowed to take ANY neuroleptic

medications. By the way, the generic name of Zyprexia is olanzapine. The

other type of medication that should be avoided with DLB are those that are

Benzodiazepines. An example would be Lorazepam or Adavin. The medications

that seemed to whole the most promise are known as Cholinisterase

Inhibitors. An example would be Exelon.

I hope this helps. Please feel free to contact me at any time.

Dave

zyprexia

My Mom is about to start Zyprexia for

the problem of hallucinations. Any comments

on this drug of choice, according to the

Dr. it may and it may not help her.

[Guest guest]

on 6/28/02 10:45 AM, Dave Dimitroff at dimmer@... wrote:

,

My mother has DLB (Dementia w/ Lewy Body). I have over the last two weeks

really began to research medications and how they effect DLB. The reason I

became so concerned is that my mother had a near fatal reaction to Zyprexia.

I don't doubt some people have some " success " with this drug but I am going

to share with you what I wish someone had shared with me.

Zyprexia is in a class of drugs called Neuroleptics or anti-psychotics. It

has been well documented for at least 2 years that DLB people are very

sensitive to this class of medication (there is another class of drug you

should also avoid which I will talk about later). But even leaving that a

side for a moment, there are some serious side effects of any neuroleptic

drug that can be worse then the orginal reasons for using medication. I am

attaching two articles that I found while researching DLB and medications.

They are well documented articles by psychiatric doctors that deal with this

everyday.

You can form your own opinions after reading it but let me quote a few items

that are just shocking about neuroleptic medications.

" It(DLB) is considered to have a more rapid progression than pure AD however

in some patients the initiation of neuroleptic medication may be associated

with increased morbidity and mortality. "

" Neuroleptic medication, often a first line treatment of episodic confusion

and hallucinations is frequently administered to patients with dementia.

However, in patients with DLB, adverse reactions to neuroleptics have been

documented and these reactions do not necessarily revert upon

discontinuation of the medication. "

" Neuroleptic sensitivity in DLB consists of a rapid decline with severely

exaggerated extrapyramidal system, increased confusion and in 54% of one

group of patients with DLB, it precipitated a terminal decline with death in

2 to 19 weeks of drug administration. "

None of this information was given to us. We, like so many people, trusted

that the doctors were well informed professionals that knew what was best.

The withholding of this information in my opinion borders on criminal and

certainly is a major oversight by any medical professional who either

doesn't know it or doesn't pass it on to family members trying to care for

their loved one.

No doctor ever told me this but I beleive my mother had a reaction to

Zyprexia that is called Neuroleptic Malignant Syndrome. This can be FATAL.

This occurred in a Psychiatric Center with 24/7 psychiatric professionals.

They continued to administer this drug throughout the weekend and only

stopped when they saw the shock on our face when we visted our mother on

Monday afternoon. (By the way, we took her in on Friday afternoon and they

told us it would be better for her if we didn't visit over the weekend.) My

mother until this time, had always been able to walk. When we arrived she

was in a wheel chair, curled over to one side, drooling and in tremors. None

of this had she ever done before. Clearly she was having a serious reaction

to the Zyprexia but they seemed oblivious to any problems. I want you to

know the doctor, who considers himslef an expert in dementia and geriatric

psychiatry, was there throughout the weekend and continued to give her this

medication. This is just one example of what happens when you blindly trust

the " professionals " . I will never do it again. I have been forced to take a

very active role in my mothers care because I can not trust the medical

community. They simply are either not informed about DLB or unwilling to

deal with patients on an individual basis.

I don't want to scare you but to give you info that I wish I had been given.

If I had, my mother never would have been allowed to take ANY neuroleptic

medications. By the way, the generic name of Zyprexia is olanzapine. The

other type of medication that should be avoided with DLB are those that are

Benzodiazepines. An example would be Lorazepam or Adavin. The medications

that seemed to whole the most promise are known as Cholinisterase

Inhibitors. An example would be Exelon.

I hope this helps. Please feel free to contact me at any time.

Dave

zyprexia

My Mom is about to start Zyprexia for

the problem of hallucinations. Any comments

on this drug of choice, according to the

Dr. it may and it may not help her.

[Guest guest]

Dave

Thank you for the informative email. Guess I was unaware that Zyprexia

fell under the neuroleptics......my dad used to take Lorazepam and as

soon as I realized what type of drug it was I took him off immediately.

He still takes Zyprexia, and to my knowledge has had no adverse

reactions to it. How old is your mom?? My dad will be 65 July 31. My

dad has, however, been going through a real sleep mode the past almost 2

weeks. Not sure what this is from or if it is just another progression

in this awful disease. Best of luck to you and keep up the wonderful

research! Your mom is lucky to have you on her team!

Sandie

Des Moines, IA

[Guest guest]

I joined the group a few weeks ago but had been too busy with my mom to

respond. But when I saw the question on Zyprexia I had to jump in. This is a

very compassionate group and I'm glad I've found it. One thing I think we

can all atest to is that DLB is unique to each individual and each

situation. The cookie cutter system just doesn't apply here. So although I

can not say Zyprexia should never being taken I can give you my experience

with it and I think that is the greatest benefit of this group. To actually

communicate with the family members who are on the front lines dealing with

the realities of medication. Man's knowlege certainly has increased over the

years but the effects of medications is just one big gray area. My own

experience says that we should be asking whether or not to medicate and not

automatically assuming it must be done. Again this is my own experience.

My mother is 66. She was diagnosed w/ dementia about 9 years ago. Only in

the last 2 years has DLB been mentioned and only very recently has it

clearly been diagnosed. My father took care of her at home, doing basically

everything for her as her physical abilities became limited. He is 75. When

she became incontinent, he just couldn't do it anymore. We decided on a NH.

But it was suggested to us that we first take her to a Psychiatric Center to

help " correct " some of her agitation and restlessness. This is when she had

the experience with Zyprexia that I talked about. She remained in there for

two weeks with no more Zyprexia. She was getting Chlonpine for the tremors

but it was mostly given PRN(as needed) to sedate her. The seconf week the

doctor started her on Reminyl. After the two weeks, we took her to the NH.

For the next 4 weeks we had one bad day after another. The whole family was

just depressed with this seemingly endless spiral downwards. Since she was

put in 24/7 professional care she deteriorated faster in those few weeks

than she had in the previous 9 years. Then to top it off, me and my 3

brothers took a trip and the next day my mom had to be taken to the hospital

with probable pneumonia. When we returned she was doing better with

pneumonia but they were giving her huge doses of Haldol(This is a

neuroleptic w/ some very bad baggage), up to 10MG a day. I still at this

point had not done any research on medications. That week the doctor

realised the effects Haldol was having and eliminated it. He changed her to

Lorazepam(Not a good choice for DLB). However she only received one dose the

following morning and none for over a week. While she was off all

psychiatric medications, she got stronger and stronger and could talk in

clear words and sentences. She began to walk again close to how she use to.

It was at this time that I was reading up on medications. I immediately told

the doctor and the hospital nurses that my mother was to get no more

neuroleptics. Unfortunately there was some confusion, so she was given one

dose of Seroquel (neuroleptic) one morning and basically slept all day. She

had been doing great each and everyday and suddenly she can't wake up. I

then made it clear she was to get no neuroleptics. And she didn't after

that. Within about two weeks total in the hospital the pneumonia was healed.

During the previous 8 weeks, I began to think that we couldn't possibly do

any worse for our mother ourselves at home. So we ultimately decided to

bring her to my house to live with me and my brother. Since she has been

home, she has been on NO medications. She has been agitated and restless a

good portion of time, but we have also seen her personality and humor come

out. At this point, we are going without medication until I can review some

of these chloinisterase inhibitors(such as Exelon) and decide if the risk is

worth it.

Sorry this is so long. Just wanted to let people know who I was and what my

situation is. I really like reading about peoples experiences with

medications. I think we would also benefit from some serious scientific

evaluations of what these drugs are and how they effect the brain. Hopefully

this group can be a clearing house of information that we can all use to

educate the medical professionals! (Sorry, I couldn't resist.)

One last thing about neuroleptics. The local Alzheimer's Support person

stopped by to see my mom. She has been frustrated time and again by the

indifference of doctors towards the use of psychiatric medications on DLB

people. She had just sat in on a meeting where an expert was in to discuss

the effects of neuroleptic drugs on DLB. The doctor who had administered

Zyprexia to my mother was present at this meeting. Evidently the expert was

just hammering the local doctors on there inability to refrain from these

medications. One thing in particular really hit home to me. He was clear

that the use of neuroleptics can cause death in DLB. He also said that they

can cause permanent damage to the mechanisms needed for swallowing. This is

exactly what happened to my mother. She can no longer swallow so we had to

have a feeding tube surgically put into her stomach. She no gets only tube

feedings. Any small pleasure she could have gotten from pizza, chocolate,

barbacue and her two favorites bacon and Coca Cola are forever gone. I don't

have to tell you how infuriating all this is when the information is out

there but the doctors either don't know it or ignore it.

I have so much to say but my mom is getting quite agitated so I better go

and try and calm her.

Dave

Dubuque, IA

RE: zyprexia

Dave

Thank you for the informative email. Guess I was unaware that Zyprexia

fell under the neuroleptics......my dad used to take Lorazepam and as

soon as I realized what type of drug it was I took him off immediately.

He still takes Zyprexia, and to my knowledge has had no adverse

reactions to it. How old is your mom?? My dad will be 65 July 31. My

dad has, however, been going through a real sleep mode the past almost 2

weeks. Not sure what this is from or if it is just another progression

in this awful disease. Best of luck to you and keep up the wonderful

research! Your mom is lucky to have you on her team!

Sandie

Des Moines, IA

[Guest guest]

Dave,

Your father is a saint for surviving 9 years with an LBD LO.

If you are attempting to fill in for him, watch out. It can

be almost impossible to keep up with an LBD patient in

perpetual motion mode. :^<

Hang in there & God Bless you all!

Pat

Dave Dimitroff wrote:

> I joined the group a few weeks ago but had been too busy with my mom to

> respond. But when I saw the question on Zyprexia I had to jump in. This is a

> very compassionate group and I'm glad I've found it. One thing I think we

> can all atest to is that DLB is unique to each individual and each

> situation. The cookie cutter system just doesn't apply here. So although I

> can not say Zyprexia should never being taken I can give you my experience

> with it and I think that is the greatest benefit of this group. To actually

> communicate with the family members who are on the front lines dealing with

> the realities of medication. Man's knowlege certainly has increased over the

> years but the effects of medications is just one big gray area. My own

> experience says that we should be asking whether or not to medicate and not

> automatically assuming it must be done. Again this is my own experience.

>

> My mother is 66. She was diagnosed w/ dementia about 9 years ago. Only in

> the last 2 years has DLB been mentioned and only very recently has it

> clearly been diagnosed. My father took care of her at home, doing basically

> everything for her as her physical abilities became limited. He is 75. When

> she became incontinent, he just couldn't do it anymore. We decided on a NH.

> But it was suggested to us that we first take her to a Psychiatric Center to

> help " correct " some of her agitation and restlessness. This is when she had

> the experience with Zyprexia that I talked about. She remained in there for

> two weeks with no more Zyprexia. She was getting Chlonpine for the tremors

> but it was mostly given PRN(as needed) to sedate her. The seconf week the

> doctor started her on Reminyl. After the two weeks, we took her to the NH.

> For the next 4 weeks we had one bad day after another. The whole family was

> just depressed with this seemingly endless spiral downwards. Since she was

> put in 24/7 professional care she deteriorated faster in those few weeks

> than she had in the previous 9 years. Then to top it off, me and my 3

> brothers took a trip and the next day my mom had to be taken to the hospital

> with probable pneumonia. When we returned she was doing better with

> pneumonia but they were giving her huge doses of Haldol(This is a

> neuroleptic w/ some very bad baggage), up to 10MG a day. I still at this

> point had not done any research on medications. That week the doctor

> realised the effects Haldol was having and eliminated it. He changed her to

> Lorazepam(Not a good choice for DLB). However she only received one dose the

> following morning and none for over a week. While she was off all

> psychiatric medications, she got stronger and stronger and could talk in

> clear words and sentences. She began to walk again close to how she use to.

> It was at this time that I was reading up on medications. I immediately told

> the doctor and the hospital nurses that my mother was to get no more

> neuroleptics. Unfortunately there was some confusion, so she was given one

> dose of Seroquel (neuroleptic) one morning and basically slept all day. She

> had been doing great each and everyday and suddenly she can't wake up. I

> then made it clear she was to get no neuroleptics. And she didn't after

> that. Within about two weeks total in the hospital the pneumonia was healed.

> During the previous 8 weeks, I began to think that we couldn't possibly do

> any worse for our mother ourselves at home. So we ultimately decided to

> bring her to my house to live with me and my brother. Since she has been

> home, she has been on NO medications. She has been agitated and restless a

> good portion of time, but we have also seen her personality and humor come

> out. At this point, we are going without medication until I can review some

> of these chloinisterase inhibitors(such as Exelon) and decide if the risk is

> worth it.

>

> Sorry this is so long. Just wanted to let people know who I was and what my

> situation is. I really like reading about peoples experiences with

> medications. I think we would also benefit from some serious scientific

> evaluations of what these drugs are and how they effect the brain. Hopefully

> this group can be a clearing house of information that we can all use to

> educate the medical professionals! (Sorry, I couldn't resist.)

>

> One last thing about neuroleptics. The local Alzheimer's Support person

> stopped by to see my mom. She has been frustrated time and again by the

> indifference of doctors towards the use of psychiatric medications on DLB

> people. She had just sat in on a meeting where an expert was in to discuss

> the effects of neuroleptic drugs on DLB. The doctor who had administered

> Zyprexia to my mother was present at this meeting. Evidently the expert was

> just hammering the local doctors on there inability to refrain from these

> medications. One thing in particular really hit home to me. He was clear

> that the use of neuroleptics can cause death in DLB. He also said that they

> can cause permanent damage to the mechanisms needed for swallowing. This is

> exactly what happened to my mother. She can no longer swallow so we had to

> have a feeding tube surgically put into her stomach. She no gets only tube

> feedings. Any small pleasure she could have gotten from pizza, chocolate,

> barbacue and her two favorites bacon and Coca Cola are forever gone. I don't

> have to tell you how infuriating all this is when the information is out

> there but the doctors either don't know it or ignore it.

>

> I have so much to say but my mom is getting quite agitated so I better go

> and try and calm her.

>

> Dave

> Dubuque, IA

>

> RE: zyprexia

>

> Dave

> Thank you for the informative email. Guess I was unaware that Zyprexia

> fell under the neuroleptics......my dad used to take Lorazepam and as

> soon as I realized what type of drug it was I took him off immediately.

> He still takes Zyprexia, and to my knowledge has had no adverse

> reactions to it. How old is your mom?? My dad will be 65 July 31. My

> dad has, however, been going through a real sleep mode the past almost 2

> weeks. Not sure what this is from or if it is just another progression

> in this awful disease. Best of luck to you and keep up the wonderful

> research! Your mom is lucky to have you on her team!

> Sandie

> Des Moines, IA

>

>

[Guest guest]

Nice to see your name in here. In my own selfish ways, I wonder and

worry about all the caregivers' names I have seen and for my own sake I

guess, need to see some sort of post from time to time. Hope you are

taking care of yourself and God Bless!

Sandie

Des Moines, IA

[Guest guest]

Dave: This message is a little late but I'd like to add some thoughts

about neuroleptics. There is information about the effects of neuroleptics

in the links section of the lewybodydisease.org website. But you mentioned

some sites.Could you send them out again if you did not the first time?

Also, the tragedy that happened to your mother is part of the whole lack of

knowledge about Lewy Body dementia or DLB. Not enough research, not enough

" publicity " about it. When I go to my own doctors, and I see quite a few, I

tell them about it. So far not one of them has ever heard of it. You will

see articles about Vascular dementia being the second most common dementia

and then Pick's disease. Not to compete but I think LBD should be in there

somewhere. The Merck's manual identifies it as possibly the second most

common dementia in nursing homes.

Recently there was a discussion here about the relation of LBD to

Alzheimer's. The neurologist had told us the two could exist simultaneusly.

Others on this board were told LBD is a variant of Alzheimer's. Still

others that it is a varient of Parkinson's. This is not an unimportant

question when you see what happened to your mother. Maybe one doctor, the

expert on dementia, was actually an expert on Alzheimer's....the two words

are often used interchangably. Even the medicine for Parkinson's can have

an adverse effect.

I believe that the catagories on our board are

l. Straight LBD alone

2. LBD with Alzheimer's

3. Parkinsonian Dementia

4. Alzheimer's with Parkinson's

I think that is one of the reason's we see such variance in the drug

reactions. But is anyone doing research to really distinguish the

diagnosis? That's why I try to tell everyone I meet about LBD. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org

[Guest guest]

Imelda,

I couldn't agree with you more on everything you touched on. I know I have

read that LBD is the 2nd highest type of dementia so it sure would seem it

deserves a much greater amount of time, research and general understanding

by the medical community. I too try and tell every nurse and doctor I speak

with about LBD and the effects of neuroleptics on these people. I had one

nurse actually write down Lewy Body on her hand. I thought that was

progress. I also think you are exactly right about the " expert " . He knows

Alzheimers and unfortunately for my mother and others like her, they know

she has dementia and so they immediately think Alzheimers. Of course this

can be a fatal mistake.

Here are the websites for the articles I found informative:

Dementia: Drugs used for behavioural problems:

http://www.alzheimers.org.uk/about/info_drugs_behavioural.html#psychotic

Neuroleptics: http://www.breggin.com/neuroleptics.html

Dementia w/ Lewy Bodies: http://www.dcmsonline.org/default.htm

(You should be able to just click on them. Assuming you are already

connected to the Internet.)

RE: zyprexia

Dave: This message is a little late but I'd like to add some thoughts

about neuroleptics. There is information about the effects of neuroleptics

in the links section of the lewybodydisease.org website. But you mentioned

some sites.Could you send them out again if you did not the first time?

Also, the tragedy that happened to your mother is part of the whole lack

of

knowledge about Lewy Body dementia or DLB. Not enough research, not enough

" publicity " about it. When I go to my own doctors, and I see quite a few,

I

tell them about it. So far not one of them has ever heard of it. You will

see articles about Vascular dementia being the second most common dementia

and then Pick's disease. Not to compete but I think LBD should be in there

somewhere. The Merck's manual identifies it as possibly the second most

common dementia in nursing homes.

Recently there was a discussion here about the relation of LBD to

Alzheimer's. The neurologist had told us the two could exist

simultaneusly.

Others on this board were told LBD is a variant of Alzheimer's. Still

others that it is a varient of Parkinson's. This is not an unimportant

question when you see what happened to your mother. Maybe one doctor, the

expert on dementia, was actually an expert on Alzheimer's....the two words

are often used interchangably. Even the medicine for Parkinson's can have

an adverse effect.

I believe that the catagories on our board are

l. Straight LBD alone

2. LBD with Alzheimer's

3. Parkinsonian Dementia

4. Alzheimer's with Parkinson's

I think that is one of the reason's we see such variance in the drug

reactions. But is anyone doing research to really distinguish the

diagnosis? That's why I try to tell everyone I meet about LBD. Imelda

To learn more about Lewy Body Disase, please visit the Lewy Body Disease

Association site at: http://www.lewybodydisease.org