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   coming off aricept... (Alzheimer's Disease & Dementia board)

18th July 2007
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!
19th July 2007
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.
Turquoise
19th July 2007
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.
1st August 2007
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
1st August 2007
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
3rd August 2007
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.
3rd August 2007
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?
3rd August 2007
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!
6th August 2007
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
20th August 2007
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
11th September 2007
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.
3rd January 2008
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.
19th May 2008
Please! I'm new. Someone let me know if I should have posted a new thread. I looked for a way and didn't see a button. ANYWAY....My mother is 82 and slipping pretty quick. She's on Namenda and Aricept. Has been on Acpt for about 2 years now. Namend just for about 8 mo. She is covered (especially the calves) with a scaly skin disease that doctors either shrug at, or throw the usual eczema meds at. Has anyone else had parents get a related dermatitis and associate it with either drug? We're at wit's end. Docs don't seem able to figure it out. She went to my allergist. He did a cursory blood test and told us she was allergic to eggs and milk but it was only a 6 out of 10. Any comments? Tks! ~ Librarygal59
19th May 2008
The new thread button is at the to and bottom of the front page that list all the threads but here is fine :-) Also welcome to the board Gal.

Both of my parents are on Namenda and Aricept and have had no skin reaction. If you do a google search on Namenda it does state that skin rashes, redness, and peeling are possible side effects. If the rash was not there with the Aricept but appeared after she began taking the Namenda I would suspect the Namenda. I would definitely point out to the GP that skin reactions are a known side effect of Namenda. If you can't get a satisfactory answer out of the GP then you might want to take her to a dermatologist and be sure he knows she is on Namenda, when the rash started and when she started the Namenda.

Hope this helps.

Love, deb
27th May 2008
My Dad took aricept for several years. It really helped him. He never had any side effects from the drug. My prayers are with you and your Mother.

Sincerely Nadine
27th May 2008
I can relate Meg... My mom also took Lexipro along with Namenda and Aricept. It worked for a while then, life went crazy. They upped the Lexipro dosage and it worked for a while, then life went crazy. She took another antidepressant for a while and it worked before life went crazy again and then she was back on the Lexipro for another round. Now she is on Remeron and once again it is working and I wonder when life will go crazy again.

Mom is also in complete denial but that is a product of the disease. The doctor's at the Memory Research Center explained to me that since input does not register in the brain there is no way for Mom to know that she doesn't know something. We tend to realize when we forget a name, face, or event. There is some vague flash that lets us know we have forgotten. With dementia there is no flash...... it never happened.

Dad had an accident the other morning. Mom put his boxers in the sink, turned the water on, and went to the laundry room. When she returned the sink was overflowing. We all know that Mom turned on the water because my Dad has never washed anything other than his own face and hands in a sink. Yet Mom insist that Dad did it because there is NO WAY that she would have turned that water on and left it. NO NO NO.... she never turned on that water. She would have remembered it. In her brain there is not a spark of recollection that she was ever at the sink therefore there has to be another explination.... DAD DID IT! Try to remember not to be sucked in by her antics. She is doing the best she can with what registers in her brain. I often wonder how frustrating it must be to turn around and see things that you have no clue how they got that way or even how you got where you are. How frustrating it must be to make sense out of a world when you only get little bits of information and never the whole.

I also remember the week I was disowned by both parents in the same week. My Dad was furious because he thought we sold his van and my Mom was furious at somebody else and realized that I would not be happy with her actions. By the end of the week they had both forgotten those angry words and I showed up with fresh baked cookies and a smile. Until the next time...

I just do the best I can each day. Try to stay calm, which I don't always do, and be positive as much as possible. Yes!!!! Remember to laugh. What a great way to disarm anger. And remember it is the disease yelling at you not your loved one...

Love, deb
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