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 Exelon: has anyone noticed........? 
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Exelon: has anyone noticed........?
Have any of your LOs who are on Exelon displayed 'over-drugged' mannerisms when they went from the 4.6mg patch to the 9.5mg? My husband did extremely well on the 4.6mg and I couldn't wait for the 2 months to pass so he could be bumped up to the 9.5, but after about a month he started being unsettled/anxious more during the day. I told his Dr. I believed the Exelon caused it and I wanted to drop his dosage back down. He said he didn't believe it was caused by the Exelon but agreed and we dropped it to the 4.6. Since then I learned from a nurse in the hospital that the 9.5 mg patches can be cut in half which makes a box last 2 months (which is good because they are $225 a box, not covered by ins.). That was about a year ago and I have tried twice to bump him to a whole patch with the same results both times, so I'm convinced that a full patch makes him agitated. Has anyone else had the same experience? I might also mention that he had the same reaction to Aricept and Ativan. Thanks, Sherry

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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.


Wed Aug 18, 2010 12:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Exelon: has anyone noticed........?
We didn't notice any bad effects when he went from the low to the higher dose BUT we certainly didn't notice any beneficial effects, either. I asked why he couldn't stay at the 4.6mg level and was told the 9.5mg was shown to be more effective. Of course, the instructions warn you not to cut the patch in half because it might release the medication too soon. We might try it, though. Frankly, after these three and a half years on the patch I'm not sure it's doing any good any more, at any rate.

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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.


Wed Aug 18, 2010 12:17 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
Wow, I never read that warning. I honestly don't know if it is doing any good anymore (or the Namenda for that matter) because Ken barely talks, and when he does his response is so off base (I might ask "would you like a banana?" and he'll reply "I never did think so" or something similarly non-responsive). He usually just laughs if anyone asks him anything. I really don't want to give up any of the meds in hope that they are doing a bit of good. I am so glad I found this forum, I have so much to ask and I've already learned so much just cruising around old posts! Thanks, 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.


Wed Aug 18, 2010 12:46 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Exelon: has anyone noticed........?
Sher,

You might find something about cutting the patch in half at exelon.com.

Did you check the pharmacy info on possible side effects from Exelon? You can find the small-print pharmacy info in larger print online at a website such as rxlist.com or drugs.com. You might see if agitation is there.

Certainly your experience and gut feel are the most important indicators.

Robin


Wed Aug 18, 2010 12:53 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Exelon: has anyone noticed........?
At times I think we all wonder if the meds are doing anything. Frank decided they weren't and refused to take them for 3 times. He has namenda and aricept in the AM and namenda and zyprexa at bedtime. After missing his 3rd dose he couldn't answer a simple question, with yes or no, his head was hanging low, and he couldn't get up or walk. Fortunately one of our daughters was here and she insisted we get him into the house, we were sitting on the porch. It took all we had to get him up and into the den. She did talk him into taking his PM meds. The next morning I ask if he remembered not taking his meds and he said yes because they were doing anything, he didn't remember anything from lunch on of the previous day. He didn't remember Amy visiting with her 5 dogs or us getting him into the house, SOOO I think at least one of the meds is difinitley doing something. I don't know which one. Frank was on Exelon for a few years and the Dr did feel it no longer was doing anything and that's when he went on the nemenda then the aricept.

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


Wed Aug 18, 2010 2:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Exelon: has anyone noticed........?
Gerry, my husband gets like that sometimes even on all of his meds. I always assumed it was a Lewy thing. He will just forget how to walk, how to stand, how to talk, etc. It's scary--the first time it happened I called his doctor but it resolved itself and then it just happened several times a day and it's been like that for over a year now. I've gotten him into the car just fine to go somewhere then needed help to get him out. More often, he'll just freeze in place. I literally have to tell him, "Put your left foot forward, OK, now pick up your right foot--move it forward, etc." He doesn't know how to sit down now and I have to tell him how, step by step.

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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.


Wed Aug 18, 2010 2:09 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Exelon: has anyone noticed........?
Maybe it wasn't lack of meds, who knows with this disease.

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


Wed Aug 18, 2010 6:23 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
I certainly agree with you that some days are far worse than others. In addition to Ken's 'freezing' periodically throughout the day he has the hardest time in the morning when he first gets out of bed. Of course I have to put his feet on the floor and pull him off the bed but he really can't get his legs to move nor can he bend his legs to sit on the toilet. I've tried rubbing/massaging his legs and feet before I get him out of the bed, not sure if it makes a difference. Does anyone have a suggestion for getting the message to the legs first thing in the morning?

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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.


Wed Aug 18, 2010 8:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3343
Location: Vermont
Post Re: Exelon: has anyone noticed........?
I'm not sure that this is something that can be "helped" by another person, drugs or anything. I've tried various things with my dad, but to no avail. His legs are like steel welded in one position. Trying to get his knees a little more bent to put his feet on the wheelchair footrests is almost impossible now. Extremely rigid legs, very flacid arms, especially his left arm.

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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 Aug 18, 2010 8:56 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
That's interesting about his arms being flacid. Ken's arms are also stiff, hard to get into his shirts. Also, the fingers on his left hand curl up when he sleeps and they are also hard to open up so that I may grasp his hand. On a happy note, I've been practicing my kindest smile when I get Ken up in the morning. One day he noticed me grimacing because of my achy back and he said "You're sad." So I've made a point of him seeing me 'happy' first thing and I really believe that sets the tone for the day. And it does for me as well :)

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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.


Thu Aug 19, 2010 12:11 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3343
Location: Vermont
Post Re: Exelon: has anyone noticed........?
Actually, my dad's arms sometimes can be almost as "welded" in place like his legs. But, mostly they just hang. I remember in the spring trying to put a jacket on him so I could push him around outside and I thought I'd break his arms before I could get them into the jacket sleeves, so I just wrapped the jacket around him as best I could. Once in a while his legs get flacid, but I haven't seen that happen in a while.

_________________
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 Aug 19, 2010 9:04 am
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Exelon: has anyone noticed........?
Hi Sherry ~ My husband tried the patch, but it was also too much. If I remember correctly, it made him more confused and disoriented. This was two years ago when it was suggested he go to the patch rather than the pill. Actually he is on the lowest dose [1.5mg] twice per day. Now it seems that the Exelon might be causing stomach distress: burning stomach, vomiting, diarrhea, black stools. This stomach distress started 1 week ago, and we thought it was due to food poisoning. Back in 1988, he had a very bad bleeding ulcer. When he was first dx'd with cognitive "issues" in 2006, the neuro suggested he take ibuprophen. The next neuro said NO, do not take ibuprophen due to his ulcer history. Then in 2008 when it was suggested he try the Exelon patch, the team at UC Irvine also suggested he start on 81mg aspirin. I am now thinking that was a mistake. Wishing you and your LO the best...
Roxanne, also in SoCal

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My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Mon Aug 23, 2010 8:05 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
Hi Roxanne,
I am in San Diego County (Escondido). Are you near? Do you know of any LBD caregiver meetings in the area? I know there is one in Irvine, I believe the first Wed. of every month but it's in the morning and I just can't get away early enough to fight the traffic from San Diego to OC. Thanks, 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.


Mon Aug 23, 2010 11:38 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Exelon: has anyone noticed........?
I think Roxanne is in San Bernardino county but close to Riverside county.

Did you check lbda.org to see if there are any LBD support groups near you? Seems like there used to be a SD group a few years ago but there isn't one any more.

The Alzheimer's Association in SD is terrific. I encourage you to contact them about support group meetings and other caregiver support.

Have you contacted your local California caregiver resource center? They also offer terrific resources to caregivers.

You might do a search of other posts here that mention "San Diego." There are at least 2 others I can think of who have posted in the past about San Diego.


Tue Aug 24, 2010 12:20 am
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Exelon: has anyone noticed........?
Hi Robin, all great suggestions but lbda.org has nothing listed near here. I used to go to a meeting thru Alz Assoc and I still have the facilitator's number if I have ??s but at this point the $ I would have to spend for someone to stay with Ken is better put somewhere else. It is a very small group and I'd really like to talk LBD, those in that group definitely have AD. I'm going to keep trying, but of course now I have found all of YOU which is wonderful. Also, I did contact the SoCal resource center and I got some wonderful info, that's how I got info on Silverado, where Ken goes every Friday now. Thanks for the help, 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.


Tue Aug 24, 2010 9:35 am
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