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Old 07-18-2007, 08:29 PM   #1
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Wink coming off aricept...

So they are taking my mom off the aricept. Odly it took 3 months for it to even start working yet it has only taken a few days for her to start slipping again. She is still admint that nothing is wrong. Monday she asked me 3 times what day it was and where was she going. Even the doctors thought it would take at least a week to kick in. Right now she's down on 5mgs and from there they'll take her off completely. We know that before the aricept mom was between stages 2 & 3. To be honest though, she was so much calmer before she "remembered" it all. The question now is, will she qualify for a alf or a nh by the end of two weeks? I don't mean to sound ungrateful for the doctors allowing my mom up to "remebering lane" but it's been a rollercoaster up there and I believe once we place her it's not going to be such a terrible thing---I pray anyway!

 
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Old 07-19-2007, 07:57 AM   #2
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Re: coming off aricept...

It's strange that they tell us Aricept can't bring back any lost functions, just hold off some of the others. But I know people who have improved on it. My MIL wasn't one of them. The side effects were worse, fecal incontinence was horrible. There just isn't anything they have right now that will really help them. Most of what is out there is experimentation.
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Old 07-19-2007, 02:33 PM   #3
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Re: coming off aricept...

A few years ago we were on vacation, and DH forgot his Aricept. I was panicked, thinking that he was going to immediately get a lot worse. We went to a walk-in clinic to get a short-term prescription for it. When I returned home and spoke with his doctor, the doctor told us never to worry about missing Aricept for a week or two since it takes awhile for it to leave a person's system.

The normal progession of AD is a roller coaster, with some level places, possibly a very few short-term improvements, and then drop-offs again. I don't think anyone knows if the drugs actually do much or not. The research supposedly says that the disease would progress faster if it wasn't for the drugs...but who knows? Columbia's nursing home calculator is a pretty good tool (do a search for "predicting time to nursing home admission").

DH also had bowel problems with Aricept and then Reminyl. He seemed to level off with Namenda for a few months, which is prescribed for moderate AD. In stage 5-6, they've now taken him off both drugs.

 
Old 08-01-2007, 06:01 PM   #4
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Re: coming off aricept...

I'm reading the post and there's some myths to clear up. I've been on the board for over 2 years and seldom post anymore, but working with AD and having family with AD takes a lot for me to want to post. Some subjects provoke me to do so.

I want to address if the RX's work, they do most recent NIH (national institutes of health) published this week states Aricept works, works well. But also in these studies it warns and in others that taking someone off Aricept causes a decline and they never return to normal functionality. This is very true, so one should stay on it from diagnosis to death. According to Howard Feldman, MD the foremost expert on AD (more publications on AD and research / practice for 30 years than any other) in the world recommends this to all patients.

Combination therapy is advisable as well Aricept w/ Namenda is great as it works on two parts of the brain and maintains functionality. No drug claims the person gets better they maintain there abilities with slower decline. Understanding the drugs effects in simple terms is the meds boost the good chemicals that send signals through the brain and nervous system and block the bad chemicals.
in my opinion, some meds is better than none as moments slip just one moment for a little longer, folding the close, remembering my name, remembering my childs name or that of their great grand child is worth that little pill.

If you also want a good read it discusses the meds and AD care, it's short at 140 pages, Alzheimer's Essentials (Gordeau / Hillier)

Good luck and

 
Old 08-01-2007, 11:00 PM   #5
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Re: coming off aricept...

Hi to all,

Just wanted to add a little here. My dad is in a nh now. he is 80 and has alzheimers and parkinsons. I believe that he has had alz. for about 10 or more years.

He was taking aricept when he was at home. He was taken off this drug by my mom. My mom and dad thought that it might be causing him to "see" and "feel" bugs in their house.

Well, I do not know if this contributed to him goin downhill and ending up in the hospital and then nh. But, in the nh a little over 3 mo., they give him aricept and namenda for his alz. and sinemet for his parkinsons plus a few other meds. I do think that this combination for alz (the 2 drugs), does help my dad. He is better, but not as good as before the cutting off of the aricept by my mom.

Hope this helps someone.

Love, Wannabe

 
Old 08-03-2007, 06:28 AM   #6
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Re: coming off aricept...

This was really interesting info for me, especially since I just saw a great but heartbreaking ad for Aricept on TV this morning that said exactly the same thing -- that the drug helps through all of the stages! I do believe that DH is slipping faster without Reminyl (Aricept family) and Namenda, even though he did struggle with stomach problems when taking the drugs.

Before DH went off the drugs, I read a medical journal study from Britain (Birmingham University) that had said Aricept is not very effective after a certain stage. I checked that info at the national research center where he is a patient and they pointed out that the FDA information was based on patients with MMSE scores >10 so that once the scores drop below 10 it is not generally perceived that there are sufficient benefits to warrant continued treatment. Arghhhhhh, what have we learned? We need the medical folks to interpret this stuff! Or, a very good point by Mimphisto, we continue these expensive medications in the hope that they might slow the decline and give our loved ones treasured moments of improved functioning.

 
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Old 08-03-2007, 07:00 AM   #7
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Re: coming off aricept...

It would seem that as long as the patient can tolerate the medication that keeping them on the Aricept would be the way to go, even if the affect is minor, any slow down in progression would be a benefit.

Begiining, have you considered insisting they put your husband back on the meds? As long as he can tolerate them of course?

 
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Old 08-03-2007, 08:27 AM   #8
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Re: coming off aricept...

We've discussed going back on the meds. This may be difficult for some to understand, but my DH has actually wanted the disease to progress as fast as possible to its inevitable conclusion.

He has always said that he would never want any medical treatment that extended life, even when medical treatments worked. This is consistent with the medical directive that he put in place. He had advised all family members and his doctors that this was his belief through the years -- and he had even refused to take medicine for his high cholesteral. DH felt that each person had the right to make their own choices, but that he personally would not ever fight to delay a terminal disease once God had indicated it was his time. He told everyone that he would never want to be a financial or emotional burden, and that the faster a terminal disease progressed the better it was for a family. DH was a supporter of the choice of legal, assisted suicide and even had objected in the past to the fact that an Alzheimer's patient could not by definition qualify as making an "informed consent" under any of the proposed statutes. (Frankly, I suspect in my deepest heart that he had planned to eventually take his own life, but that the disease quicly took away his ability to plan a suicide. I locked his gun cabinet and eventually sold his gun collection, and he never noticed.).

I fought with him to get him to take the drugs for the first few years, when he still was able to function well enough to be somewhat independent since I wanted our kids to have their Dad as long as possible. He reluctantly agreed that as long as he could be independent, he would not be a "burden." At this point, he is no longer able to be alone and we had agreed that this would be the trigger to stop any and all treatments. Since DH had expressed himself so clearly on this issue through the years, I know that he would have hoped for the fastest progession of his disease and the earliest release possible. The trade off is that the harder stages will come more quickly too. Others, of course, may be trying to preserve their loved one's level of functioning as long as possible -- as I did, during the earlier stages.

Last edited by Beginning; 08-03-2007 at 08:31 AM.

 
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Old 08-03-2007, 02:27 PM   #9
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Unhappy Re: coming off aricept...

Hi, I am new here,just looking for some support. I am so sad,my mom was diagnosed about a year ago. She has been going down hill ever since,today being the worse day. Yesterday my dad had to take her to the emergency room for stomach pain. They had her there for about 6 hours,they ran all sorts of tests and blood work. They concluded it was most likely acid reflux.
She has been on namenda,and this week started on aricept. She is more confused than ever, she is scared that I am not going to be ok, she sometimes says she sees things that are not there. I am an only child & no one to talk to. I am falling apart at the seams. My dad is currently taking care of her,but it seems like she is just getting worse, and we will no longer be able to cope. I hope that someone answers me, I need it! I am so depressed, and I cry all the time. Please anyone that can offer support I need it!!
Thank you!

 
Old 08-06-2007, 08:18 PM   #10
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Re: coming off aricept...

plokso,

Being on the aricept and other new meds may help her. You unfortunally have to give it time. It took my mom nearly 3 months to get to an understandable level. She's leveled off for a bit right now but they just completely stopped her aricept. So they are waiting to see where that leads. Once the doctors get your mother situated on all her meds she should be ggoing up (at least for a time) rather than down.
Godspeed,
christi

 
Old 08-20-2007, 01:35 PM   #11
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Re: coming off aricept...

Hello all,
Not trying to hijack this thread so if I need to start a new one please let me know.
My mother was started on Aricept a week ago. She c/o not sleeping well and leg cramps so her GP stopped Aricept and she starts Namenda tomorrow. My concern is that after reading the Namenda info online, it appears does very little unless in conjunction with Aricept. So I have to wonder if her GP should have left her on Aricept in hopes the side effects would cease or is the Namenda just as effective.
Though I was employed in the mental health field for many years, I guess I didn't prepare very well as this all seems to be pretty overwhelming.
gm

 
Old 09-11-2007, 07:09 PM   #12
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Re: coming off aricept...

the leg cramps can cause eventually life threatning problems (at least thats what we were told) Some people tolerate Aricept other's can't for that reason. It's one of those things--they've made a drug so high function that it has to have some serious side effects. My mom is on Nameda right now and she really does seem to be doing just fine on it--she even has come off her sleeping pills.

 
Old 01-03-2008, 11:08 AM   #13
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Re: coming off aricept...

She went back to Aricept on her own because she felt the Namenda was not helping as much. Seems to be handling it ok but still experiences stomach problems.

 
Old 01-03-2008, 03:18 PM   #14
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Re: coming off aricept...

My mom used to see people in her house! Usually someone she knew who has died. We thought uh oh, daddy is coming to visit because her time is near.

But then she would come up with these odd stories about my sisters coming over and visiting with friends that my mom never met, and then just leaving. she would say she was fixing dinner and then everyone just left her there alone. I would get these strange phone calls about twice a week.
Since I am out of town it took me awhile to figure out none of that was actually happening.

Then she kept saying she could hear someone upstairs and would go up there to investigate. Since her fall today we are putting a child gate across the stairs. No more going upstairs for her.

lately, all that has stopped and she actually seems more alert and functional. But her fragility is increasing. Hopefully she will let us sell her house and move her closer to my sister.

 
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Old 01-03-2008, 03:47 PM   #15
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Re: coming off aricept...

You do what you have to do! If you wait until she 'lets' you do anything, it will end badly. My Mom would have lived all by herself and set her house on fire if we had let her have her way. She would have gone out in deep winter in a summer jacket, and left the door unlocked, in New York City! The time came when I became her live in help, and I morphed from the daughter into the mother. She became the child. But there was some resentment. She used to complain on the phone to my sister, who believed her, being several states away. I was being so mean to her, I was not allowing her to do what she wanted. One time, when I told my sister that Mom was walking into the street in front of cars, she answered, "she has had a long and happy life, it is OK if she goes out alone and gets hit by a truck. Better to have freedom than safety." This caused a major rift in the family, since I wanted her to be safe more than to be free. This problem is only now solved. Mom is dead, and we will allow that controversy to die also.

Mom gave POA to my brother, so he finally made the decision about the nursing home. Funnily enough, the one who was so against it said, "oh no, she can't come to live in MY house".

Love,

Martha

 
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