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 Medicines For Lewy Body Dementia 
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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Tammy,

Why use Xanax on your mother for the difficulty she has in moving and eating? Even if she needs more calming you can probably provide that by just being with her, talking to her as you feed her, and just holding her. That's the best medicine after all.

The way I see it, our loved ones are declining, and none of the drugs can help that. Some make it worse. I try to use only those meds that are needed for some temporary problem (an infection or stomachache). Maybe in the early stages some meds help moderate the decline, but near the end, they can be problematic at best and counterproductive at worst. Just my opinion.

Doris

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Bay Area, CA


Thu May 27, 2010 2:23 am
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
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Xanax in low dosage seems to help many people sleep and is very good for end of life anxiety. My elderly uncles both had xanax when on hospice.

My dad had a very bad day today and the NH called to ask if they could try xanax. (yes they are calling and letting me know before hey add drugs now).
Since I myself use xanax and find it very beneficial - I said yes to try.

I am going back again tomorrow to see what is going on with my dad again. It never ends.

Today he apparently was very out of it and believed his dream was real and he could not let it go. He was upset because he thought something bad had happened to someone and he would not believe it was not real.

I talked to him on the phone and talked about other things and he had no memory problems. His voice sounded strange, he sounded drugged and confused regarding the dream. I can't understand it. They said nothing new had been added drug wise. But he is on very strong IV antibiotics right now. I am going crazy trying to figure out what is going on with him.

I talked to the doctor who prescribes medications yesterday at the NH and he seems like a good doctor. He classified Lewy Body along with all the other dementias and said they all were treated the same.


Fri May 28, 2010 10:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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If the dr. thinks all dementias should be treated the same, I think you need to help your dad by educating the dr. about how many drugs have opposite and/or detrimental effects with possible LBD patients. It's amazing how many medical professionals don't know much if anything about dementias other than AD. And, if possible, get a dr. who knows about LBD and meds. Lynn


Fri May 28, 2010 10:30 pm
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
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Hi Lynn.
Yes I took one of my Lewy Body brochures with me and showed him the things which made me believe dad has lewy bodies. And showed him the parts about how many lewy body people were very sensitive to those drugs.

He listened to me but I think it will take more time and info but they are starting to listen.


Fri May 28, 2010 10:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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I'm not sure LBD is treated any differently than AD. We are simply treating the symptoms and we use AD drugs on LBD patients because there are no LBD-specific drugs.

You have to be just as cautious about giving someone with AD a neuroleptic or an anticholinergic med.

And, only 50% of LBDers have neuroleptic sensitivity. The other 50% don't have this sensitivity. My guess is that same percentage is true in AD.


Sat May 29, 2010 12:29 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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As I understand it, it's the PD component of LBD that is sensitive to neuroleptics rather than the dementia component because of the drugs' antidopaminergic effects. People with PD should not be given the typical neuroleptic drugs, either. So why would they be contraindicated in AD?

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat May 29, 2010 12:51 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Because study after study shows that neuroleptics given to the elderly with dementia cause early death. Just because someone has AD doesn't mean that neuroleptics are safe for them.


Sat May 29, 2010 9:22 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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OK, but the reason for avoiding it in LBD/PD is the antidopaminergic properties. The contraindications are based on very clear pharmacological actions.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat May 29, 2010 9:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
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Now I am totally confused - so many postings and articles I have read say that it is important to know if someone has LBD and not AD, because various drugs that help AD patients can be very harmful or non effective for LBD patients. Case in point from just ONE of the articles on this site:

"5.Early and accurate diagnosis of LBD is essential: Early and accurate diagnosis is important because LBD patients may react to certain medications differently than AD or PD patients.
A variety of drugs, including anticholinergics and some antiparkinsonian medications, can worsen LBD symptoms. LBDA has compiled a list of medications that should be avoided.

6.Traditional antipsychotic medications may be contraindicated for individuals living with LBD: Many traditional antipsychotic medications (for example, Haldol, Mellaril) are commonly prescribed for individuals with Alzheimer’s disease and other forms of dementia to control behavioral symptoms. However, LBD affects an individual’s brain differently than other dementias. As a result, these medications can cause a severe worsening of movement and a potentially fatal condition known as neuroleptic malignant syndrome (NMS). NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure."

So, Robin, why are you saying "I'm not sure LBD is treated any differently than AD. We are simply treating the symptoms and we use AD drugs on LBD patients because there are no LBD-specific drugs."

This seems to be the opposite of what appears in many other places on this Web site. You have referred people many times to various drug lists because of the particular drug sensitivities of LBD patients. Apparently I have been totally misinterpreting all the other postings? Am I crazy? Lynn


Sat May 29, 2010 7:42 pm
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
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Lynn,

I find this to be very true with my dad. This describes his reaction on a few occasions even with cough, allergy, type medication.

"" However, LBD affects an individual’s brain differently than other dementias. As a result, these medications can cause a severe worsening of movement and a potentially fatal condition known as neuroleptic malignant syndrome (NMS). NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure." "" (and I would add severe confusion)

I really worry about all the old people that are much worse off then they should be because people are not aware of the above and that even over-the-counter medications can cause it.[/i]


Sat May 29, 2010 10:49 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
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GraceGirl: I totally agree with you. It's a shame that our great country can't provide more help for the elderly list they do in other Nations. Don't get me wrong, I love my country and served in the Navy for 20 years 6 months and 3 days and do not regret one moment of it. My LO served her time in the US Army. And, our country that we served does not have adequate health care for the elderly. Look at Finland, Germany, Asia etc. They all take care of their own. Yes, I am bitter that my LO has LBD and there is nothing I can do except see they treat for Parkinson's. Where are the people doing the research going for the next convention, Puerto Rico?


Sun May 30, 2010 6:54 am
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