View unanswered posts | View active topics It is currently Fri Oct 31, 2014 4:03 am



Reply to topic  [ 12 posts ] 
 Exelon and Namenda didn't work 
Author Message

Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Exelon and Namenda didn't work
My husband was diagnosed 13 years ago with PD, then 1 1/2 yrs ago with PDD (with lewy bodies). He had already begun experiencing hallucinations and significant cognitive decline, and the Doctor explained that with PDD it is somewhat of a trial and error with medications--first tried Exelon which didn't work and made everything more pronounced. At his last appointment the Doctor wanted us to try Namenda, after several weeks of increased confusion we stopped. I think for him, like for many others with PDD or LBD the AD medications don't work. He takes Stalevo and Sinemet for the PD symptoms, seroquel in the evenings which seem to help the anxiety he feels in the afternoon and helps him get restful sleep. He remains somewhat "pleasantly" confused one moment and better the next.

I have learned, and am experiencing, the ups and downs and the more rapid decline of PDD/LBD than that of AD.

I hope others have more success with the dementia medications than we did.

Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Thu Apr 12, 2012 8:37 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Exelon and Namenda didn't work
Be happy with "pleasantly confused". Just when my dad got to that lala land phase, his psychiatrist, without my permission or knowledge as POA, put him on Namenda & Aricept. That seemed like a good thing for a few weeks, but eventually, with his increased knowledge of what was going on with his diminishing health, he got very depressed & very angry because he was back to knowing how bad off he was. That was when I tried getting him off these drugs.

I was seeing a counselor at the local memory care center at this time, and she had said to me "the one good thing about dementia is that the person will eventually not understand what is going on and they usually become content, because they no longer know reality." She was right, I did start feeling better when he entered this lala land phase. Then comes these drugs that I didn't know he was taking, and I was NEVER able to get his drs. to agree to take him off them. And of course, even though the ALF people agreed he'd be better without them and tried to convince the CNP and psychiatrist, those 2 were in cahoots and refused to disallow him going off these meds. ALFs, at least in that state, are required to follow dr.'s orders whether they agree or not.

If he were at home, I would have discontinued them NO QUESTION!!!

_________________
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 Apr 12, 2012 8:53 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Exelon and Namenda didn't work
My husband has been on the Exelon patch since early 2007. When he first started on the low [4.6mg] dose, it made a significant difference in his cognition but we noticed no improvement with the obligatory increase to 9.5mg and there is simply no way of knowing if it's doing any good at this point. Even so, I'm afraid to try stopping it as some have experienced rapid deterioration after discontinuing Exelon. His neuro claims it can be restarted if it doesn't work out but I guess I'm still reluctant.

_________________
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 Apr 12, 2012 9:49 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Exelon and Namenda didn't work
In fact, AChEIs -- Aricept, Exelon, Razadyne -- typically work BETTER in LBD than in AD. The good reaction to AChEIs is viewed by some neurologists as an indication the person may have LBD than AD.


Thu Apr 12, 2012 10:51 pm
Profile

Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: Exelon and Namenda didn't work
I have to say when my wife was put on the Exelon patch in place of Ariecpt, I did notifce a difference at first but then it slacked off. When added Namanda it was great for about a year. Now it seems things are getting much wrse, Very difficult time getting around (Physical Therapy helps), cognition and confusion getting very bad. Can not assemble words to make sense most of the time. Dr Appointment on May 1st when I hope they will change back to Aricept of the generic for Aricept which has shown amazing results in a human trial in Japan. Another study in UK where a procedure on the brain has been proven to reverse Parkinson's. Not sure, just reverse what ever that means


Fri Apr 20, 2012 8:02 am
Profile

Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Exelon and Namenda didn't work
Aricept created more confusion but Exelon and Namenda have helped. Sinemet also made him more confused. He has been on the Exelon and Namenda since 2006... Such a challenging disease.

_________________
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..?


Sat Apr 21, 2012 7:11 pm
Profile

Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: Exelon and Namenda didn't work
Flatlux, is he still on Ssinemet? My LO is on 25/100 twice a day and has so many hallucinations it's not funny. Constantly fingering things that are not there. See's babies, dogs and some adults.


Sat Apr 21, 2012 7:38 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Exelon and Namenda didn't work
My two cents worth: My husband takes high doses of Sinemet and yes, they do worsen his hallucinations and delusions. But without it, he would be unable to swallow and would drool constantly and probably would be unable to move at all. He can at least move his hands and arms slowly at this point. He also takes Seroquel and has been on the Exelon patch since early 2007.Most medications for Lewy and PD are a trade-off, as his first neuro told us.

_________________
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 Apr 21, 2012 9:46 pm
Profile

Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: Exelon and Namenda didn't work
Mariesmac: No he is not on the sinemet. If fact, he tried it twice but both times it did not improve his movement and created much more confusion. So far, he is still able - sort of - to swallow, feed himself and walk. He is only 70. His odd symptoms all started when he was about 55 and rapidly accelerated when he retired at age 62 in 2004. I cannot imagine a worse fate. We could fight cancer, but there is no fighting dementia...
Lord Have Mercy,
Roxanne

_________________
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..?


Sun Apr 22, 2012 9:45 am
Profile

Joined: Mon Feb 20, 2012 9:40 pm
Posts: 1
Post Re: Exelon and Namenda didn't work
My wife has been in Health Care for two and one-half years and our experience with Exelon and Namenda has been positive. About a year ago the Neurologist commented that we don't know if the medications are still effective so maybe we could experiment by stopping and see the result. Within three or four days there was marked decline so we started up again and have not tried to experiment again. About two years ago we switched from Aricept to Exelon with a positive outcome.


Sun Apr 22, 2012 1:36 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Exelon and Namenda didn't work
RYoder wrote:
My wife has been in Health Care for two and one-half years and our experience with Exelon and Namenda has been positive. About a year ago the Neurologist commented that we don't know if the medications are still effective so maybe we could experiment by stopping and see the result. Within three or four days there was marked decline so we started up again and have not tried to experiment again. About two years ago we switched from Aricept to Exelon with a positive outcome.
That's good to know! I get the jitters whenever my husband's neurologists suggests stopping his Exelon patch. How long has she been on the Exelon?

_________________
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.


Sun Apr 22, 2012 1:47 pm
Profile

Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Exelon and Namenda didn't work
Hi all....well on the advice of my husbands doctor we tried the Namenda again, very slowly titrating it up to the dose of 10 mg in the am. and 10 mg in the p.m. We got to this full dose about 10 days ago. And the result has been: He now sleeps about 18 hours a day, freezes and shuffles which he didn't before, and there are no more glimpses of cognition at all. I think it is conflicting with his Sinemet/Stalevo. I know that the "slide" into Lewy land can have its ups and quick downs, but this was really quick. I have called the doctor and we are going to wean him off of Namenda. I know some of you have had good results, but I think he was beyond the "early" stage when we started. I just hope that he can get some of his movement ability back. Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Mon May 07, 2012 8:31 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 12 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr