I saw an ad for a 23mg dose of Aricept now approved for moderate to severe Alzheimer's. My MIL has been on the 10 mg dosage for about 6 years and of course it doesn't really do any good anymore. Does anyone have experience with this? Or should she be on the Exelon patch? Or is it even worth changing anything at this point? She doesn't speak much, doesn't move much, and can't remember anything that happens from minute to minute. She can subtract in her head but doesn't know who the president is or whether or not she ate lunch or breakfast that day. She hasn't had hallucinations for a while. Thanks to anyone who can provide insight.

My husband has been on the 9.5mg Exelon patch for 3.5 years with good initial effects but of dubious value now. Exelon literature states it is for 'mild to moderate' dementia and he has been beyond 'moderate' for at least two years so I rather doubt that Exelon would help.

I wouldn't change her to Exelon. There is lots of anecdotal evidence that changing from one AChEI to another is not good.

I assume the patent is coming off the current dose of Aricept (5mg and 10mg) and that's why the company has come up with the timed-release 23mg version.

Presumably the GI side effects of 23mg are greater than the GI side effects of 10mg. You'd have to look at the company's study to see if there's any increase in cognition or ability to do ADLs.

One well-known geriatrician, representing the organization Public Citizen, and another geriatrician submitted a petition to the FDA in mid-May 2011, asking the FDA to ban the 23mg version of Aricept.

"Data show that the 23-mg dose of donepezil is significantly more toxic than the 10-mg dose," said Dr. Sidney Wolfe, director of Public Citizen’s Health Research Group. "Combined with its lack of improved clinical benefits, this leads to only one conclusion: that the 23-mg dose should be immediately withdrawn from the market."

Here's their petition:
http://www.citizen.org/petition-to-fda- ... icept-2011

Robin

That's very useful information, Robin! One member of this forum's husband died shortly after being put on the 23mg Aricept.

I took a quick peek at this and the first thing that I noticed without reading it through was it was given some negative reviews, I do want to go Back and read this fully and yes one of our forum and support group members lost her husband after starting the newer, higher dose and it happen very fast, right from the beginning with higher dose things started to change and went straight down hill !

I was 20mg for two weeks~pharmacy filled prescription wrong...

I definitely was improved….

so was the cramps and gastro….violently so….

I was more agitated too…

I dropped back to 10mg…..big decline in everything….

some time has passed and I have continued on the 10mg dose of Aricept…

I recently started upping the dose according to Dr's orders….we discussed this some time back….

I have been on 10mg in morning followed by 5mg at lunch for 5 days now…..

I am getting clearer thinking….

I had my first two 8 hour nights of sleep in months….at what might be considered normal times….night before last….I actually slept and woke up rested…..might all be coincedence….I'll take it….

in a couple of days….I increase to 10mg in morning followed by 10mg at lunch….

after I adjust to the increased gastro and cramping….it is happening……

then I will start Provigil again…..its been over a year since I was on Provigil/Nuvigil…..

Craig, that sounds like good news for you. I do think that normal sleep is very therapuetic! I hope that the undesirable side effects fade quickly.

I have been on 20mg of Donepizel (aricept) for awhile now…two and half weeks….
and added Provigil back….

Wow….

I am a thinking machine again…..it feels so good….to be able to think better….

not all fixed…..sad…..BUT….real HAPPY for the improvement and so grateful…

the side effects are dreadful though…..
all the Parkinsoian stuff is worse….

I am agitated more….anger is more of an issue….
motor stuff….dysfunctional…and interesting…..
sensory…..off the scale….
emotions….YES…..
more stuff…without a doubt….remember I am not fixed….can't remember everything at once or ever...

it puts more stress on those around me…..BUT….it puts me….inside in a better place….

what is more important?

sad….for me…..those around me…think this is bad….
I am glad that I am still in control….

I do FEAR the day….when I am not….
I am doing everyting I can to get a safe and secure envirnonment around me for ME and THOSE around me….

why do those around me insist on making it next to impossible?
I am tempted to move into Mayo parking lot….
where at least there are at least some that understand what is happening here…..
even there….not all do….ask me how I know….while I can still tell you….

I know….something to take the edge off….next drug….
remember….one drug at a time…..
measure the good effects….
measure the bad effects….
make sound decisions based on all…..

but….in the mean time…..
have to have a safe and secure environment to be able to make those adjustments…without
taking everything away from the patient….

that is what would be happening if I was a little further along….
sad….I wonder how many times this happens….

I know it doesn't happen all the time….
I applaud those of you who do the right thing….
I appaud those of you who at least try….

GET educated!
NO excuse!

disclaimer….this is not meant as anything personal to anyone on this site….okay….

Craig,

You have probably seen heartfelt discussions on this board regarding decisions to add or increase various meds and their benefits versus their drawbacks. These decisions almost always fall to the primary caregiver to make. And we all try to weigh the pros and cons to come up with the best decision for our loved ones. It is not easy. It is not a "power" I particularly relish -- it is one I would turn down if there were other viable options.

Your lbd doctor is uniquely qualified to adjust and fine tune your meds. He is also very available via email. Make sure Dr. Boeve knows your reactions as you change drugs or dosages. Make sure he knows about the anger stuff, the Parkinsonism that have increased, whether sleep issues are better or worse, etc. etc. He can't help if he doesn't know. (No guarantee that he can help if he does know, but the odds improve greatly.)

As his caregiver, I do this routinely for Coy. I am in charge. No questions asked. I consult his doctors. I make decisions. Perhaps because he started out with very severe symptoms and could not possibly have made decisions in his own behalf we fell into these roles automatically.

In your situation, I think your wife may be getting mixed messages. She should be taking care of you, but you insist on being "in control." She may not be sure it is appropriate to talk to Dr. Boeve "behind your back," even if that is exactly what the situation calls for. Your anger may intimidate her. I'm just trying to imagine what it would be like to be caregiver for someone in your stage of the disease (a stage Coy was never in).

Please don't take this as handing out blame. My heart goes out to both of you in this unusual and extremely challenging circumstance. I really want the best for both of you, together and/or separately.

Lewy is an extremely cruel adversary, and he doesn't play fair. You seem to be doing remarkably well holding up your end of the fight.

I am glad that you are happy with the overall outcome of your drug changes. Be sure to report in the full range of your reactions to Dr. Boeve.

exactly what you said….Jeanne….

my posts…..are my experience…..or my perception….

my combination of problems are troubling….it makes me really unbelievable at this point….

Jeanne you met me….I was functioning pretty close to normal that night? or maybe even better than some/most normals (delusional now)…

But, seriously….most times….too normal….

People, here physically here in TN, not on this website….are hurting me…through their ignorance, and refusal to do something about it….

How can it be necesary for me….obviously I am in control…..

….I am in insight…..much crueler than control I have to the outside….

the outside here answer to take away control….not work with me to help me keep what I have….
I know I am losing….help me keep some of it….

I am so forturnate, to be able to start living in the now…..

My absent one is absent because of alcohol, these two things cannot coexist in the same space….

I have behavior problems that I cannot control….but I still insight enough to be able to depart the environment….when I am losing control….
those around me, are the ones that should be changing that environment…..
alcohol, makes for some classic things….just like Lewy does…..
denial, lies, hiding things, passing guilt to those trying to help you, guilting others into doing your responsiblities….

yes….a tough story….except it isn't a story…this is my life…..

a tough break….a classic alcohol enabler….second generation….my Dad was alcoholic…my Mother made me a co-enabler….
I can't pull it off anymore….nor do I have the desire to…
nor to lie about why my story sounds so convuluted….

I don't own it anymore….

I own mine….

I am so blessed to be able to have enough control to be able to make the environment around me safe and secure for me and those around me…
Like you said….together/separated…..

I will be leaving for HABIT in a few days…..me and my Daughter….
my son has got his overseas contract shortened, and will be back in the US at the end of November….

I am working so hard on this….before I know I won't be able to….

please…..take any comments I make as only my experience….if you can use for a positive outcome please do so….
please don't anyone on here take any of this as anything negative to any caregiver….other than mine…

I am so sorry to hear this, Craig. That is a very sad situation. To go from being enabled to having the enabling end must be a shock to the alcoholic, and I understand that while it may be the best thing to happen it can be very hard on marriages. Add on to that the financial difficulties, and then the need too for the formerly enabled/cared for partner to do an about face and become a caregiver ... well, that is a tremendous amount of stress. I am so sorry that you couldn't overcome it together.

I hope a change of scenery for a couple of weeks and the HABIT program will help you make a fresh start.

New article about Aricept 23mg:


http://www.nytimes.com/2012/03/23/busin ... rning.html

Drug Dosage Was Approved Despite Warning
By Katie Thomas
Published: March 22, 2012
New York Times

Four months before a best-selling Alzheimer’s drug was set to lose its patent protection, its makers received approval for a higher dosage that extended their exclusive right to sell the drug. But the higher dosage caused potentially dangerous side effects and worked only slightly better than the existing drugs, according to an article published Thursday in the British Medical Journal.

(see link for rest of article)

Wow! It's pretty disheartening to see the way the FDA caved to Pfizer. Great post, Robin!