Hi All, I'm new to this message board and need a little input. My husband's (Bob) Neurologist diagnosed Bob with "Early Onset" AD in February 2005. The Dr. immediately started Bob on Aricept and a month later, prescribed Nemenda. Our last Dr. Appt. the Neurologist informed us the Aricept only works or is affective for three months. Bob wants to stop taking the Aricept. Has anyone else encounted this? And if so, what were the results of your loved one, when they stopped taking the Aricept? Thank you in advance for your input and advice. It is greatly appreciated.
Regards,
JoAnn S.

SnoJo,
i think I would check with another neurologist.

We met with Linda's neurologists this past week. She has been on Aricept for 2 years and for Namenda for 19 months. We saw little change with Aricept and major change (positively) with Namenda. Normally, Namenda should be taken with Aricept.

Our doctor said that in the very early days, because most testing was done for only 6 months, a lot of doctors tried Aricept for a few months and then took people off. Commonly they found that when they came off there was a major progression in the disease. Was Aricept slowing the process? Possibly.

Also, he said the idea that it is only good for a few months came from the early testing. Now testing has been going on for several years. It shows continued benefit for many people.

Unless there are serious side effects, our doctor says don't take the risk of going off...you can't make up the difference for the lost time if you try to go back on.

Hope this is helpful. I would suggest you get another opinion.
Peace,
Bill

Hi SnoJo,

I would see another neurologist.

My 80 year old mother has taken Aricept for almost 2 years with positive results. Coincidently she started to decline last spring about the same time she got a new neurologist. He added Namenda to her daily meds and she improved remarkably--not normal function but OK. I know what her condition was 2 years ago and I shudder to think where she would be today without these drugs.

Without a cure, my hope is to give Mom the best quality of life possible and to postpone the inevitable as long as God permits.

Good luck and don't forget to take of yourself.

I was on Aricept for 4 yrs.before it started not working.I then was put on Reminyl(Razadyne now).That was 3 yrs.ago.I have a friend who has been on Aricept 10 yrs & it's still working.
I agree another Dr.is in order.

As with most medications, some have time limits. Aricept only worked for 18 months with mom, she was then put on Reminyl, and later we got Namenda, actually Memantine, we ordered through Germany, a few years before legal here. Doesn't matter now though, nothing works any more. But remember that each person and each case is different.

what about side effects of aricept like seizures?? Anyone heard of this?

If the Aricept has stoped working try another medication.Don't stop trying.

Good Morning all,

Thank you all for your input. I'm new to the message board and it took me awhile to find my post (LOL) I have another question. have any of your loved ones been diagnosed with "Early Onset" AD compared to "Late Onset" AD? I think maybe that is the difference. And why we were told the Aricept would work for approx. three months. My husband is only 59 and I was told the "Early Onset" AD is a more rapid deterioration process. Bob is still on Aricept and I'm keeping him on it until it becomes apparent it is not working. Thank you again.
Regards,
JoAnn S.

Hello, I'm new. I'm 35 and my husband is 45. He has Early-Onset Alzheimer's. He's been on Aricept since December of 2004.
In the beginning the side effects were awful. Leg Cramps were atrocious. There were others,Ringing in Ears, uncontrollable hearing. Volume is either too loud or too low.
We have had positive results but we still have our up and down days.
The Dr. had tried him on Namenda and it made him meaner than a Snake.
I think it's great that the med does work for some though.
As for 3 months and the med stops working? I don't know. With Ken, it still works.

Here's our experience with Aricept:
My husband was diagnosed with EOAD at age 50, and put on 5 mg Aricept, in March, 2003. We switched doctors, and dosage was increased to 10mg. With each appt., mini mental tests showed increased progression, so by August, 2003, my husband was switched to Reminyl. The progression slowed for awhile during 2003. He started Namenda in Feb,2004, which had no impact on the slowing of the disease, which just progressed onward at that point, even Reminyl couldn't slow it down.
What I've learned from reading this board is that there's no standard, each patient is different, and react differently to medication.

This is my first time useing this service. My mom was diagnosed with AD 9/02...several months prior to that we knew something was wrong...just with her behavior and questions, etc.(April 2002)..She started Aricept Sept. 2002 and we did see that the progression slowed down alot. After 3 1/2 years, she is still in her home, but the situation is getting worse and I need some help with whatever I can get.
We check on her everyday...but she no longer can be with family gatherings...She is showing signs of meanness and cruel at times.
I have 5 siblings, but most of the time whatever gets done is me or one sister in Fryeburg...
Thanks-

Lanny Snow Doe

My heart goes out to you Lanny. I know how it is being the only one to care for my husband. I have NO help.
He too, get's mean and cruel. It hurts. I pray to God when we do go anyplace, that he won't be that way.
Some days he just fine, other's watch out. This past Sunday was a NIGHTMARE.
I've had to run an ad in the paper advertising for help.
Between him and our son, it's alot. It's too bad that all of you couldn't get together and take turns caring for her.
I knew something was wrong with Ken back in 1999, right before our son was born.
In 2001, we went through a series of tests, it wasn't getting any better and the dr. said there was nothing wrong.
We kept going along and I'm watching the progression. Last summer, we went through more tests. The Neurologist suggested he see a Psychiatrist. In December of last year, he was put on Aricept. It's helped ALOT, but the disease is still there and he's definately NOT the person he used to be.
If you ever want to talk, my email is listed below.

Cecelia

Cecelia,the only problem I had with Aricept was unexpected diahrea.I bought depends & hung on.It worked for me.The benefit outweighed the negative.

My father was diagnosed in 2002 after my mom died of cancer. the doctors first started with arecept and it worked till the past couple months. the problem is that he also has parkinsons, so the dr. we have is working more on the parkinsons then the alzheimers. i tell the dr. that he's seeing things and the dr. just messes with his parkinsons meds. i know that we need to deal with the parkingsons but i feel his memory sliping and i just want to give him something that will help with memory.

All good posts on this topic of Aricept. I see our experience with our uncle in each one. He was diagnosed in 01 with late onset and has been taking it every since, now also takes Namenda and both helped him. Only thing I could add is he gets a lot of exercise by walking on the beach every day which I think is important, and he has a doctor of internal medicine guiding his meds and overall care. She consults the neurologist rather than him doing the prescribing.

Good luck with your husband

Jian

I also found this at the Alzinfo.org ask the experts site, hope it helps

Question
How long does Aricept remain effective?

ALZEXPERTS
Gunnar Gouras, M.D. - It continues to be effective for a long period of time. Often we will see patients decline substantially when they stop the medication because they feel it is no longer helping. This indicates to us that yes it is still helpful.

Hi, I am new to this website and my husband David has been diagosed with Alzeheimers. We believe he has had it for 2-3 yrs. My one of many questions is, have you found your love ones to sleep alot. It seems he is always sleeping. He is in the early stages and he is on Aricept. After reading all the emails it appears the bottom line is everyone is an individual and what may work for some will not work for others.

Thank each of you for giving me valuable information.

Linda, yes most do sleep a lot! My husband, unless I prod him, would sleep 18 out of 24 hours a day! I try to keep him up and busy as much as possible. Also, your husband will probably need an anti-depressant.
Try posting in the caregiver's forum. You will get many more answers to your questions as this sometimes is not noticed by all. Blessings

My Dad has had AD for about 2 yrs now....He is never tired and never sleepy...He is up at 2-3 am fully dressed and ready to go somewhere....Mother and I are just about to drop. He is up and down all night, thinking he has to pee. Wrong....but will not go back to bed...Usually we spend a good 2 hours looking for someone in the house that is stealing something...hello...it is 3 am.....how can you get them to get some rest...Tired...here..

Hi Teresa,
My Dad is also very restless and always wanting to be on the go but does wake us up at nightat times but does not wake us as yet..He use to wander around in his home but seems to stay in the room in ours....He also was losing everything and when I use to go to his home in Florida (once/month for the last few months until I brought him to our home last month) I would spend many hours looking for things which he hid..Now that he is in our home and in one room with it's own bathroom that problem is better..He only has a few places to hide things which I already know and quickly find them..Also, I think he feels they are "safter" now from someone "stealing them" since he is on the second floor and his condo was all one floor on the first floor...
I also would like suggestions on the restlessness. He cannot concentrate on TV other than enjoying the Raymond show (sometimes misses whats going on but can catch a funny part here and there and loves it) and a couple game shows..I understand Raymond is on all day Wednesdays on one channel and will tape it and use it when I am exhauted so I can sit a bit..Does your Dad enjoy any one show which you can also use?
Marci

My husband has been complaining of loose bowels for the past week. Today he also said he doesn't feel well. He has had all kinds of blood tests etc all normal. He has been on Aricept for several months now so I don't know if this is a side effect from the medicine or something else? Anyone experienced this. Looks like if it was a side effect of the medicine it would have started much sooner? Sandra22

My husband has loose bowels. He SWEARS that he can't poop, but he does. He has this issue with not being able to have a bowel movment. He poops well.
Ken has his nights where he's up and down all night long. He's only 46.
Ken sleep? HA! He would go all day and night some days if he could. He'll complain about being tired, but will keep going. Some nights I have to prompt him to go to bed.
I'm exhausted. We have a 6 year old son who requires his own special needs, as he is severely Asthmatic. So between him and Ken, I cry alot some days.

quote:

Originally posted by SnoJo:
Hi All, I'm new to this message board and need a little input. My husband's (Bob) Neurologist diagnosed Bob with "Early Onset" AD in February 2005. The Dr. immediately started Bob on Aricept and a month later, prescribed Nemenda. Our last Dr. Appt. the Neurologist informed us the Aricept only works or is affective for three months. Bob wants to stop taking the Aricept. Has anyone else encounted this? And if so, what were the results of your loved one, when they stopped taking the Aricept? Thank you in advance for your input and advice. It is greatly appreciated.
Regards,
JoAnn S.

Hi Snojo. Mom started on aricept 3 yrs ago. Last week they said it is no longer working and we are going to try exelon today for first time. She has also been taking namenda for about 2 yrs and will continue on it.

Neurolgist said sometimes another will work when one has stopped so don't let him stop taking his med without the Neur. changing to another please. It could have a bad backward effect on him.

re: how long does Aricept work?
My husband was on Aricept for 4 years. There were minor side-effects like diahrea at first, but that corrected itself quickly. After a couple of years I started to question whether it was still doing its job, but the neurologist said it was dangerous to take him off. she said she'd seen people 'crash' when the drug was stopped. So we continued. Then, on Jan. 15 of 2006 my husband suffered a grand mal seizure...right out of nowhere! His dosage of Aricept was cut in half (back to the 5 mg he started with). On April 1 (no joke) he had another seizure...not as severe, but still a grand mal. Very frightening if you've never seen one before. Result...they took him off the Aricept altogether. Apparently there is a slight chance that it can cause seizures if the person is in later stages of the disease.
If I had ever doubted that the Aricept was doing its job, I certainly don't now. My husband's condition went downhill so fast I was not able to adjust to each new phase before he went into another. His speech is almost non-coherent and he just cannot seem to understand even the simplest instructions I give him. He still knows who I am, but doesn't know my name, nor our children or grandchildren. He is only 63.
So, my advice to anyone thinking about taking their loved one off Aricept just because you don't think it's working...make sure you have something else to replace it. It was still working for us after 4 years!
RAS

My husband has EOAD and is 52. He has been on Aircept and Namenda for a year. He is not progressing as fast. We were told it could be 2 years to 20 years. Right now I just see little things and he is still working. Working takes a lot out of him and he sleeps alot when he is home. They just cut his aricept to 5 mg. last visit, a few weeks ago for the diarreah and he is better now. I pray it works for a long time. I t is amazing how diferent everyone reacts with Alz. You just pray everyday and live each day at a time I have learned. I am thankful for every good day. God Bless you all, Linn

Hi everyone,
I am new to this so please be patient with me. My Mom has this awful diesease. I think her aircept is not doing to much these days. She fell six weeks ago and is still in the care of theripest presently at a nursing home. I am having a really hard time dealing with this. I am an only child and my MOm and I are very close. I feel I am losing her rapidly.....G

Sounds like there are many newcomers to this site. I am another one. I fear that this is a trend with my age group. (I am 55, my mom is 82). My mom has used aricept for over a yar. I too am not sure if it has worked well but I am afraid to stopy using it for fear that things will get worse. The issue of taking pills is problematic to begin with but I know some people have added pneumenda (sp?) and had better results. I am not sure what to do about that. I too feel that I am loosing my mom - or at least the mom that have known all my life. To make my story worse, my dad passed away 5 years ago and my only sibling (brother) passed away 8 years ago. Any words of wisdom from this group is appreciated. LJSHEAR

Since I am so new, I had not read ALL of the entries on the other posts. Now that I have read many of them, I saw lots of information about the meds. I can even spell namenda! Though very informative, it still leads to a feeling of "should I" or "shouldn't I" because everyone's experience is so different. The only continuing thread through all of these posts is the feeling of sadness - for our loved ones and for us. Who knew that life would be this tricky?

I have read all the posts above this and discovered three other medications besides Aricept. I will ask my mother's doctor about "Namenda", "Reminyl" and "Exelon" I am 54 and have been giving Aricept to my 87 year old mother for about a yesr and have seen no changes. She had been classified as infirm after her brain scan. She is unable to carry-on a conversation or prepair her meals. Luckily I have enrolled her in the Elwyn Center in Wilmington

webpete Namenda is usually given along with either Reminyl, Aricept or Exelon. It is a different class of meds and helps. Mom was on Namenda and Aricept until Aricept stopped working after 2 1/2 yrs. We are now trying Exelon. She is not adjusting well to it. None of the listed side effects of the drug, but not helping the AD so far 2 weeks into changing over. Tonight she was a little coherent for a few mintues and told me it was like having your head between two hands and pushing in on your brain. It is also causing some sort of problem with her neck(stiff muscles)She said it was like she was going crazy. I told her I loved her and wish I could make it go away but this is the only drug left for her to take. She smiled and said I love you too and when the good Lord is ready He will take her. Meantime she just wanted to be with her kids and grandkids. I promised again I would always be here for her and take care of her....then she slipped back into her little world again. So brief a time but I was glad for our talk. We do not have many any more.

I would like to ask the good doctor what he means by "working"? I have seen well over three hundred patients prescribed this placebo to no effect at all. Slowing its progression? That, too, is a dubious claim. This med was approved by dictated government trials and in the absence of anything else ( at the time ), it was approved. If your loved one receives any positive affect by the use of this so-called drug, consider yourself fortunate and you may wish to have said person evaluated neurologically to the nth degree to figure out just what property of this drug is actually causing such a positive effect. It is the opinion of this professional that the affected person would benefit more from 2 ounces of cauliflower a day.

Chris:

I found your post intresting to say the least. I know of one person that was on Aricept & Namenda for over 4 years and is still very sharp. My DH has been on both of these meds for 10 months and I have thankfully seen a stabilazation. I have also read a report by a famous neurologist in GA that stated the combination slowed the progression down in a three year study.

With all due respect, I'm glad you found it interesting. Apparently, you're in on the loop of the lucky. Plus, permit me to say, that you are the very first who stands by the drug with such conviction. Good luck.
Bottom line, folks, this drug is prescribed more than corn flakes because doctors are expected to do something. There are better drugs out there. But of course, we have a difference of opinion and that is fine.
I guess I slam Aricept so much because I've seen no effect in so many cases that I pray the labs across the world come up with something so much better.
I respect your opinion, btw. I hope that is just part and parcel of what makes this board so great. If your loved one is receiving benefit, then the rubber has met the road.

Whoa doggie! I somehow skimmed over the fact that a COMBINATION was being used. That alters the scenario considerably in my book. The effects are by no means attributed to the Aricept alone.
BTW, I still respect your response( for what it's worth ) ; )

Chris:

I has been an aggressive advocate with reguards to my husbands care. I had heard that the combination was what top doctors were recommending. I had my husband on both of these meds before he was officially diagnosed. He also takes DHA, vitiam E and has logged in over 650 miles of running this year. If you know of other promising things out please feel free to share your ideas.

I'm just trying to keep him happy & healthy until something better comes along!

I am another new person to this site.
My mother is on both Aricept and Namenda.
Although her memory has not improved...I did notice a significant difference in her acting more like herself again.
I actually noticed it when her Namenda went from 5 mg to 10 mg.
She has had no negative side affects from either of these drugs.

Yes Namenda is generally given with either Aricept,Razadyne(was Reminyl)or Exelon..........

In pretty much what was an experiment, Ritalin was used in combination with a host of other drugs to see if cognitive performance could be enhanced. Contrary to what all the blithering know-it-alls ( all except for the doctor who knew what he was doing ), it worked so well, my speech/cognitive sessions went so well, she was talking in fully grammatically correct sentences in about 75% of all our conversations. Smiling for she knew she had a friend and hadn't been abandoned by her worthless husband who had left her all alone in a nursing facility and never once came to see her in over two years. Besides being her Speech-Language Pathologist, I became her friend, one so sorely and desperately needed. You see, hers was a case of terribly early onset. Memories started returning and although she had a difficult time piecing them all together in a cohesive manner, she progressed astoundingly so. Regrettably, the ritalin was increased likely at too fat a rate and she suffered a pretty significant rebound effect...started pacing, running into things and becoming hard to control, though she was never aggressive. Still, the speech and ability to sense her surroundings and the memories became staggering in their complexity as she related them to me. Please keep in mind she was hardly intelligible prior to this trial. She became a different person, so much more normal in function. You should have heard all the nurses that knew nothing of what was going on....interferring, she should have been left alone...to do what? Die and disappear? No sir! I put so much effort into this my heart became attached to her and broke for her for she was all alone at age 54! I wanted desperately for her to remember me as she was temporarily hospitalized for this condition, so in order that the effort would not be forgotten and that perhaps, upon her return, further advances could have been endeavored based upon the enormous success we had achieved. I was proud of her accomplishments for I have never seen anything like this.
well, her DPOA who had didn't even know what Speech-Language Pathology was called the facility and complained ( apparently thinking I was putting the move on his wife, regardless of the fact he had abandoned her ) and I was subsequently dismissed from the facility for caring and being compassionate. The Rehab company I was employed by, having no spine, declined to defend my efforts and now I work for another firm having completely lost touch with what was the most exciting and spectacular breakthroughs I had ever witnessed. The Ritalin worked. This drug apparently pulsed through the tangles and plaque and for a while, she was nearly herself again. I documented all the noted spectacular occurances but the ignorance of the facilities administrator in conjunction with the unit manager on the Alzheimer's ward who, in her profound ignorance thought all speech therapists did was swallowing, put an end to all cognitive therapy at the facility and my notes ( which were exceedingly extensive ). Now, as it is, all AD patients receive piecemeal support and wander aimlessly though the halls with only each other to interact with excluding an occasional visit by a doctor who knows and understands the human mind and the loss of mental functioning as a result of AD. He is an unsung hero.
There is no stimulation for these clients anymore. They sit and wait for the by-monthly visit by a daughter or son with only 3 or 4 cared for spouses who are in attendance every day.
I bring this to your attention because of the will of some to try to break this seemingly impenetrable barrier because like us, they know something must be done. The status quo is synonymous with stagnation while victims and caregivers alike lie is despair. He knew that and took a gamble that almost worked. The pharmaceutical intervention and my constant stimulation worked really well. Amazingly so.
This in no way means Ritalin should be advocated as the drug of choice, but closer scrutiny ( monitoring ) may have revealed an even more desireable outcome. I will never forget this episode nor the ineptitude the state evidenced in dealing with what could have been an icebreaker. I refuse to remain silent any longer on what could have ramifications of an extremely positive nature.

Chris:

Thank you so much for sharing your experience with the young patient. I am sad to think of the forgotten ones in the nursing homes. I am still doing everything I can to get my husband into a clinical trial- and will find out in November if we were succesfull. AD patients have rights too & they deserve to be loved and respected. I agree that stimulation is important. My husband still reads books even though he often has to reread passages at times.

I will be looking into Ritalin. I was unaware that Speech-Language Pathology could be of benifit.

You are most welcome. Nursing Homes operate under a great deal of ignorance when it comes to Alzheimer's. Their perception; the person has it, make them comfortable and assist them in ADLs. They have no idea that Cognitive therapy can open windows and when used in combination with the right pharmaceuticals, the windows may indeed open very wide, literally heightening the affected person's perceptual acuity. The mind must not be allowed to stagnate...ever. The tangles and amyloid plaque, signature hallmarks of AD, do undeniably impede the ability of an impulse to move, speak, think clearly through a neural network hence diminished recall, poor judgment and a reduced ability to reason. However, stimulation, especially done in a repetitive manner in conjunction with the right drug, can often do wonders. The only question remains. How long will the window remain open? This is exactly why further research is required. Please keep in mind, Ritalin must be monitored with extreme scrutiny. Any dosage increase must be done slowly with detailed documentation accompanied by close observation.
BTW, we Speech-Language Pathologist are the ones best suited to work cognitively with the AD patient. It's a little secret that should be globally recognized by this time. A Psychologist will listen ( but in this case, to what? ), a psychiatrist only prescribes. We are the ones in the trenches and that's just fine by me.
Thanks for responding.

I am 52, may have early onset of AD, looking for natural remedies before going on any meds, am seeing a neurologist and using conerta for concentration, which seems to be helping.

Wondering, is there any use in brain teaser things such as crossword puzzles etc. or does the brain just decline at its own pace?

Any hints on how to remember better? Currently I just bring a pad of paper and write things down, but I am hoping for some way to make myself remember better.

Looking for answers...

Anything you can do to keep your brain moving along is so important!! Do crossword puzzles, aerobic exercise, art, dwawing, etc. The more aerobic exercise that you do will keep you feeling well and fit which is SO important.

My mom, 82, has been on Aricept for about 18 months, and I didn't see any positive change. From January 2007 to now she has really declined, and two months ago the doctor added Namenda. And I have seen NO improvement. She has NO short-term memory, and little long-term memory, though she is very aware of what is going on "in the moment", and can still add 2+2 and get 4, so to speak. And she seems to often live in the State of Confusion, bless her heart.

I guess my concern with Aricept is: how can you possibly know the drug is slowing down the progression of the disease? And the same with the Namenda: supposedly there should be a slight improvement with memory, but I haven't seen ANY improvement. How are results measured by the researchers?

I hope and pray that a viable treatment for this diabolical disease is found, and soon. I see how it is destroying my beautiful, sweet mom, and I feel so helpless because I just can't fix it.

By the way, my mom has lived her life as the Poster Girl for healthy living!

No NO NO
My wife has been on Aircept and Namenda for 4 years. She stopped two weeks ago so she could qualify for testing a new drug. She went down hill so fast and far that she is not able to do the test med.

Please...get another opinion. each person is different. No two patients are the same. What works for one does not necessairly work for the other. If there are no side affects keep on giving it.

Get another opinion.

I was at a seminar with the author of 36 Hours in a Day...he said that it is hard to tell when the medicines do not work. The only way is to take them off of it. He said, if you can afford it keep on giving as long as no bad side affects.

One down side in taking them of is that if they are working and then downslide...you loose that....Putting them on will not take them back to where they were.

Roger