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 Aricept, Namenda, etc. for the Early on-set Patient 
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 21
Post Aricept, Namenda, etc. for the Early on-set Patient
My husband is 53. He was diagnosed with LBD after an almost overnight slam into the disease after having received Versed for cataract surgery in April. He has steadily declined over the past 6 months.

Right now, he's in a weight loss stage to beat the band. He's lost 60 pounds in 5 1/2 months and, despite eating anything & everything, plus Ensure, he's lost another 6. For a 6' 5" man, he's almost anorexic.

He was given a script for Aricept but I'm reluctant to start him on it now because of the top 4 side effects: Nausea, vomiting, diarrhea and weight loss. Right now he cannot afford a single pound!

Knowing the hypersensitivity LBD patients have for any medication, I'm very leery. What say you?


Last edited by ChocoMare on Tue Nov 19, 2013 8:20 am, edited 1 time in total.



Mon Nov 18, 2013 8:46 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3173
Location: WA
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
My husband used the Exelon patch for almost seven years. It helped him a great deal early on with no noticeable side effects. It was difficult to assess its effectiveness as the disease progressed.

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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.


Mon Nov 18, 2013 11:28 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
Have you had him evaluated by hospice? That amount of weight loss may be significant to them, and if he is accepted into hospice they may be able to give you some advice on adding a new drug at this point. I'm so sorry - he is so young! It's hard at any time, but with someone in their early 50's it must be even more of a shock. Keep us posted on what happens and good luck, 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.


Mon Nov 18, 2013 8:17 pm
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 21
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
We're gonna try the Aricept, but cut them in half per the cognitive neurologist. Sure hope it helps cuz, right now, he's very bad... thinks we're living in our old house, that it's full of people and doesn't know why he can't go to work.


Thu Nov 21, 2013 2:00 pm
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Joined: Sat May 25, 2013 3:53 pm
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Post Re: Aricept, Namenda, etc. for the Early on-set Patient
My mom took Excelon and it worked but then we had to take her off it as it affected her appetite so badly she lost 2 dress sizes in around 6 months.

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Nov 25, 2013 1:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
Gailabbi - are you sure it was a side effect of the drug or could it have just been the normal course of the disease? Did she eat more after the drug was discontinued?

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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.


Mon Nov 25, 2013 6:02 pm
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Joined: Wed Nov 13, 2013 3:30 pm
Posts: 21
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
It'll be a week tomorrow since he started the Aricept. No change. Today he thinks the house is full of patients he has to transport home from the center. (He used to drive a wheelchair van for my company.)

How long does it take to show any difference?


Wed Nov 27, 2013 3:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
All things LBD can vary so much from one person to the next it's hard to predict how long it will be before you'll see a difference or even IF you'll see a difference. It doesn't work for everyone, unfortunately, and its affects can wear off as the disease progresses too. You may want to have a conversation with the dr. who prescribed it if you don't notice changes soon. What did they tell you to expect? Have you done any searches on the topic? Perhaps the dosage will need to be increased at some point, but contacting his dr. soon is your best course at this point, I think. Good luck, and let us know how it works out. Lynn

_________________
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.


Sun Dec 01, 2013 4:03 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 157
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
Hi, Sorry to be so slow posting back. Yes the Excelon was in pill form at the time and it affected her appetite so badly she just ate almost nothing. She was OK losing a few pounds but when we realized Mom was continuing to loose and too quickly we went back to the Geriatric clinic who was prescribing the meds and the Doc suggested that the Excelon patch might work but it wasn't out quite yet. So Mom was off the Excelon for a white and symptoms reappeared and then, when the patch came out, she went on that - which worked much better (except that she didn't like the patch). And she did put some weight back on. Mom stayed on the Excelon patch for a while (I can't be sure how long now) and eventually switched to Seroquel which she stayed on to help with hallucinations.

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Dec 04, 2013 2:02 am
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Joined: Wed Nov 13, 2013 3:30 pm
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Post Re: Aricept, Namenda, etc. for the Early on-set Patient
Well, it took 12 days, but I've seen a positive change. For the past three nights, he's only gotten up one or twice. Used to be 4 - 6 times a night.

His mood has improved and he's more interactive with me.

I know it's not a cure, but if it gives him a bit more cognitive awareness, it's worth it.


Wed Dec 04, 2013 7:38 am
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
Yeah!

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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.


Wed Dec 04, 2013 8:49 pm
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 13
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
I am a LBD patient that was placed on Razadyne and Namenda right after my diagnosis 4 years ago. My neurologist was very well read on LBD and very aggressive in my treatment. While my memory is getting worse and i have hallucinations, I still believe these drugs have helped me. Now, about four years late, I do notice fear issues, memory loss, both short and now long term, and autonomic function issues, i.e. body temp, BP, constipation. I also have some balance issues. But, thanks to my neurologist, I have had a good four years.


Wed Jan 22, 2014 11:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Aricept, Namenda, etc. for the Early on-set Patient
Welcome, Donald and glad you are doing well. I hope you will continue to find help with the symptoms. Lynn

_________________
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.


Thu Jan 23, 2014 12:02 am
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