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 Exelon patch 
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Joined: Tue Aug 30, 2011 1:57 pm
Posts: 2
Post Exelon patch
At our last neurologist visit, Doctor was reluctant to prescribe exelon (sp?) because husband is losing weight
and is is of a slight build to begin with. He felt possible gastro problems would outweigh cognitive gains but told me
to think on it. Our next appointment is in 3 days. I feel that we must have some help in treating a fairly rapidly
decline in cognitive skills including completion of simple tasks such as putting clean dishes away, etc.

Does anyone have any experience with living with stomach issues? Is it possible to do so if the drug is helping the head?

Right now he is only on low dosage sinamet and mirapax for the parkinsons. He needs more help.

Thanks.


Sat Dec 31, 2011 8:13 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Exelon patch
My husband has been on the Exelon patch since early 2007 and has had no stomach issues. I believe the patch has much less effect on the GI system.

_________________
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 Dec 31, 2011 10:16 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Exelon patch
My dad was on the Exelon patch for many months and didn't appear to have stomach issues with it. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Dec 31, 2011 12:47 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Exelon patch
Exelon, Razadyne, and Aricept are the drugs at the core of the treatment for LBD. My own 2 cents is that you MUST try one of these medications. The Exelon patch has fewer GI side effects. But you won't know until you try. I wouldn't wait any longer. Exelon is the only FDA approved medication to treat PDD (Parkinson's Disease Dementia).

An alternative you can consider is Namenda. But there's not as good data on Namenda as there is on Exelon for PDD.


Sat Dec 31, 2011 2:21 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Exelon patch
Alas, there are no guarantees. Different people react differently to most drugs. The only way to tell is to try. You know what life is like without this drug. See what it would be like with it. Keep your observations keen, of course, and be on the alert for adverse reactions.

Best wishes!

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Dec 31, 2011 5:56 pm
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Joined: Sun Oct 17, 2010 2:06 am
Posts: 63
Post Re: Exelon patch
My hb was on aricept and had to discontinue it because of the intestinal problems. His neurologist had me try the low dose of exelon, and it has helped some. It has not affected his appetite at all.


Sun Jan 01, 2012 5:58 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 107
Post Re: Exelon patch
Exelon really helped my mom and her dementia when she first started it. We then had to up it twice to maintain the level of cognitive function that it gave her. Unfortunately, the last time it was increased it triggered a manic high (my mother is also bi-polor - great combination). The neurologist ended up taking her off of it all together and oddly, she still seems fairly lucid (more so than before the last increase). I find myself always amazed by my inability to predict how these things are going to work out. The thing I have noticed lately is that she is having more lucid dreams and is becoming paranoid again. She is absolutely convinced that the woman who was her favorite nurse at her ALF is now beating her. When I spoke to my mother about this, she said that her insides are all twisted and that this is due to the nurse beating her. My mother has gut pain a lot. After speaking with my mother, I learned that she had wanted her medications early and that the nurse had told her no. My mother turned that no into a sense of personal rejection and that sense of personal rejection into physical pain that (in her mind) had no explanation except that the nurse was abusing her (this same accusation got her asked to leaving the previous ALF that she was in - they will not keep people who accuse them of abuse no matter how obvious it is that these accusations are coming from hallucinations and lucid dreams). I tried to explain to my mother that the nurse could not have caused her internal gut pain by hitting her since there were no bruises or outward signs. My mother insisted that it was real to her and that she knew it was true because she felt that it was (my mother seems to go with her emotions as her source of reality no matter how much real concrete evidence there is to the contrary). The nurse spoke to me about this later and said that my mother is going to eventually become violent. I sure hope the nurse is wrong. She said that most people with DLB become violent near the end. Is that true? I hate these pronouncements that the ALF staff always make about my mother and her dementia. They also claim that my mother is poorly behaved when she knows that we are coming to visit her and that they would appreciate it if we would not let my mother know that we are coming before we do. But I have transgressed - I really liked the Exelon patch and what it did for my mother until it triggered the manic high (and the paranoia and behavioral issues that go with manic highs for my mother). I certainly would try it myself. You can always have it stopped if the side effects are more than he can handle. Good luck with it.

Liz


Mon Jan 02, 2012 1:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3176
Location: WA
Post Re: Exelon patch
Her nurse is wrong. Some with LBD never become violent. My husband was violent early in the disease and is less so now [of course, he is more medicated now]. I don't think anyone can predict future behavior in Lewy. Doctors don't even try. There are some facilities in our area, though, that will not take LBD patients.

_________________
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.


Mon Jan 02, 2012 1:30 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Exelon patch
Liz,

The nurse told you that your mom was eventually going to become violent. Was this based on her exposure to two other patients who had lbd? Or maybe the extensive research she does on her off hours?

Sheesh.

I wish people who don't know what they are talking about would quit making sweeping pronouncements.

If she really had that kind of crystal ball she would retire to Vegas.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Jan 02, 2012 3:38 pm
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 107
Post Re: Exelon patch
Thanks Pat and Jeanne. It is good to hear. I agree with you about the crystal ball. I am always amazed by the things they tell me. But - assisted living is not a choice right now and we haven't been able to find the perfect place (after figuring out doctors, this has been the most difficult aspect of managing my mother's care).

Liz


Mon Jan 02, 2012 10:14 pm
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