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 Discontinuing the Exelon Patch 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Discontinuing the Exelon Patch
Derek's new neurologist specializes in neurodegenerative diseases, in particular PD, PDD, LBD & FTD. I asked him about whether the Exelon patch Derek has been using since early 2007 is likely to be still effective and he said, 'There's only one way to find out.' So after two months [after another slight medication change has taken effect] he wants to discontinue it as a trial. When I said, 'I thought you couldn't restart it once it's been stopped", he said 'Rubbish! Of course you can!' So if Derek has an adverse response to discontinuing it, he will put him back on it.

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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.


Thu Mar 24, 2011 5:41 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Discontinuing the Exelon Patch
You've probably seen reported here that people don't always return to baseline if the patch (or any AChEI) is discontinued and then re-started. It's a risk.


Thu Mar 24, 2011 5:59 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Discontinuing the Exelon Patch
Yes, I have seen those posts and told him that. He said those reports are 'anecdotal' and not based on research.

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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.


Thu Mar 24, 2011 6:16 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Discontinuing the Exelon Patch
You might check the Alzheimer's Research Forum. Seems like there was one small study published on this about 18 months ago.


Thu Mar 24, 2011 8:37 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Discontinuing the Exelon Patch
I looked but didn't find it. Please post the link if you find it. Thank you.

The manufacturers of the Exelon patch state that it's for early to mid-stage dementia so they don't even claim it does anything for later stages. And it might be hard to measure baseline and deviations from baseline at that stage, too.

_________________
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.


Thu Mar 24, 2011 9:00 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: Discontinuing the Exelon Patch
Quote:
After starting the use of Exelon Patch it may take up to 4 week for the improvements to appear. In general, scientists are not very optimistic about the effectiveness of cholinesterase drugs – they say that only half of patients may get the delay in worsening of the AD symptoms for about 6-12 months. However, in view of the fact that no cure for AD is currently available, even a small improvement should be treated as the achievement. Besides, to enjoy improvements one should stay on the medication forever, because stopping the therapy results in the disappearance of all the improvements achieved during the treatment course.


I found this article. Perhaps it will help. This paragraph is near the bottom of the article.

http://www.pillwatch.com/info/exelon-pa ... sease.html

DrP


Thu Mar 24, 2011 9:25 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Discontinuing the Exelon Patch
I'm finding this thread very interesting because Dale was obviously failing badly mentally at the end of November and his neurologist wanted us to TRY the Exelon Patch. I said, "Why? So his returned delusions and hallucinations would be clearer to him."

In my opinion, the doctor was grasping at straws..... He authorized Palliative Care soon afterward.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Mar 24, 2011 10:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Discontinuing the Exelon Patch
I think I'll go with the neurologist's advice and see what happens. His cognitive level is so low right now that it's hard to imagine it could be worse. If it does, we'll start it up again. Apparently, there is no problem in doing that.

_________________
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.


Thu Mar 24, 2011 10:29 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Discontinuing the Exelon Patch
I'm with you. Pat. You are going to a specialist in the kind of disease Derek has. You might as well go with his advice. If there were convincing studies with evidence that restarting the patch is ineffective, surely he'd know that.

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


Thu Mar 24, 2011 10:41 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Discontinuing the Exelon Patch
Sorry, with my volunteer brain donation work and my volunteer support group work locally, I don't have time to do research for others these days.


Fri Mar 25, 2011 12:33 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Discontinuing the Exelon Patch
:lol:

_________________
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.


Fri Mar 25, 2011 10:31 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Discontinuing the Exelon Patch
I will be following your experiment with a great deal of interest, Pat. As you say, there appears to be 'nothing to lose.' We certainly did a lot of experimenting with Sinemet, as you well know. In the end, I think the progress of the disease made its own rules.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Fri Mar 25, 2011 10:37 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Discontinuing the Exelon Patch
We discontinued the Exelon Patch and I didn't notice any change.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Mar 25, 2011 10:51 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Discontinuing the Exelon Patch
We also discontinued the Exelon patch, I believe it's been about 4 months now. Ken's Neurologist said it wasn't doing any good at Ken's level so we did a trial discontinuation and I haven't seen a bit of difference. He also told me that the Namenda is probably not making a difference, but that since it isn't hurting we may as well continue.
Please note, however, for those contemplating trying Exelon: I noticed a huge improvement when it was started 2 years ago, so I am not saying it isn't beneficial, just not for us at this stage. Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Fri Mar 25, 2011 9:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Discontinuing the Exelon Patch
Sher, Derek also showed improvement even at the lower dose, when he first began using the patch in early 2007. In fact, we didn't see any further improvement with the 9.5mg dose. But it's doubtful it's doing anything at this point so we'll do a trial discontinuation in a couple of months.

_________________
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 Mar 26, 2011 12:21 am
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