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KariSue Asked July 2011

My husband was given a prescription for generic Aricept and he was completely out of reality. Is this a side effect of the drug?

My husband (age 55) has had declining cognition for quite awhile. He has been on disability since he was 38. He suffers from high blood pressure, asthma, urological problems, sleeps excessively, depression, and problematic lack of mobility (due to 4 back surgeries and 3 neck surgeries). He also has kyphosis and falls about once a month or more. His primary doctor feels his cognitive problems result from 2 suicide attempts years ago when his brain was deprived of oxygen for a time. Another doctor (a neurologist) says that his problems result from the long-term use of too much medicine. On Sunday, I drove us by the house we lived in until 2006. About an hour after we got home, it was obvious my husband was not in reality. He started crying and talked about wanting to go home, that (our home) was not his home, he didn't recognize anything, and he mentioned several times he wanted to see his mother (who we haven't seen in several years). This continued the rest of the day. He kept calling me by my first name like I wasn't here. This morning he seemed better, so I went to work. While at work, he left me a voicemail on my phone and called the office phone, asking me to come to the "new place" and that someone was coming to take him to the "new place." I can't believe that a medicine that is supposed to slow the decline of cognition and help some with memory and cognition, could cause a reaction like this. I have never seen him like this. Could driving by our old house have triggered all this? I wish we never would have driven by that house. Or could it be a reaction to one of the other meds he takes (he takes a total of 20 different ones).

pamstegma Jul 2016
shaku05, any medication that has been given for a long time should not be suddenly discontinued. The dose has to be tapered off. Now if your patient has taken only a low dose for a short time, reaction should be minimal. Be sure you read the patient information sheet that comes with the Rx.

shakun05 Jul 2016
What happens if dementia medicines are discontinued suddenly

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Reverseroles Feb 2016
Yes my mom was on I think 5mg and ok but at a nutty stage at that time anyway. When they upped her dosage she was crazy so I thought if she is this bad on this, what was she on her regular dose? I took her off, did her no good at all, and aggitated her.

Vetster Feb 2016
My mom has had dementia for a year and was taking namenda, which i took her off the drug due to bad reaction, attitude changes, becoming mean... Not harmful to anyone, she recently went back to new dr.. Which then turned around and gave her donepezil ( aricept) and has been on it about a week. Having worse reaction to this med . Ive noticed the changes getting worse the longer she is on it. I will be taking her off it as well. I can handle the memory lose...which saddens me but come to accept it, but i cannot handle mood swings n anger and being unhappy, which both meds had caused. I was told that tumeric was an excellent antioxidant for cell damage, which was recommended to me to try her on. Im sure it wont be any worse then Namenda or Aricept.

pamstegma Jan 2015
Jessie, Aricept does not kill. The disease is what killed him.
katnmouse: funny how one medication works well for one person and not for another. I guess that is why medicine is called "a practice".
In Kari Sue's case too many drugs are worse than no drugs at all. AND NEVER drive by the old house, that really sends them over the hedge.

katnmouse Jan 2015
Side effects can be terrible. I got permission to play with my husbands doses of Aracept (generic). Cutting pills and dividing doses. We finally got thru the side effects and his body did adjust. I feel the trouble was worth it in the end. Exelon patch made my husband angry and hostile, that was not worth even trying.

jessie78 Jan 2015
My husband died of Progressive Supra Nuclear Palsy. He had been on Aricept. Could that have triggered his final illness?

Reverseroles Dec 2014
tamtam, I too took my mom off of it and she was better off of it!! I wouldnt use it if I were you. When my Mom was in the agressive wandering stage she had depakote, she is now on nothing except her regular pills. 10mg of aricept can cause blackouts, they normally start with 5mg ! Seriously, just let him be him, unless he is taking off on you or hitting and aggitated, then call ask ask about depakote sprinkles. Best thing for your Dad is you being there for him and sing!!! I even sung my words sometimes so Mom would understand more. Ive had mom almost 7 years with me in my home too, been there. good luck !

TamTamitTamTam Dec 2014
This has been very helpful as I'm primary caregiver recently for my father. I changed doctors when I moved him with me and pharmacy that I used didn't have arciecpt and so Dad was off it two days, he seem more alert without the drug and not up all nite. Nor was he fidgity. I may not give this to him at 10 mg every morning. Very interesting info here. Thank you

desert192 Jul 2014
Husband had same tpe of reaction to Aricept. After 2 weeks of steadily getting worse and my arguing with Dr. who had prescribed Aricept - Dr. said "well take him off of it and see what happens.
Next day husband looking out of window - asked where we were - I told him at home. He looked around - realized where he was and said
"Where did I go. I don't want to EVER go there again.
Asked his internist - he said if reaction is to drug usually happens within 1 - 2 days of starting drug
Told him it did (it happened next day after starting)and we had been dealing with specialist who had prescribed it for 2 weeks
Husband's chart marked to "allergy to Aricept"
Read their packaging carefully - _"It will take up to 3 months to see difference - at that time either will be no change - or decline will be slowed - or condition will be worse"
After 1 year condition will revert to where patient would have been if never took medicine.
I know some people may be helped by this drug - my husband has PTSD and CHF - not AD.
Sounds like your husband has plenty already - would get 2nd opinion on adding this drug.
For use it was 'hell on earth" for 2 weeks. It is something I would never take myself - would never give him again - and would advise anyone taking to be on lookout for adverse effects - even if Dr. says"it can't cause that reaction"
it can and does.

nursepeggysue Jul 2014
I agree completely with post who said you MUST check medication yourself. Find out what it is for, I am a nurse and just looked my mother's medications up. Why did I wait so long????
She is on 4 blood pressure medicines and something to keep from having clots in legs which says "DO NOT take if you, have CHF she has sever chf.
One of the medications for blood pressure says causes fluid and salt retention. She just got out of hospital because she could not breathe due to fluid!

LindaCole May 2012
The higher dosage of Aricept 20 mg daily almost killed my Mother (79 years old). She quit eating, got weak and hydrated and anemic, due to the higher amount of gastritis that the Aricept caused which gave her terribly stomach pain and digestive bleeding (she associated food with pain), plus she was constantly confused and dizzy, and was having severe diarrhea, pancreatitis, and continual urinary tract infections. She was hospitalized, received an endoscopy, colonscopy and capsule endoscopy which didn't show any other problems with her digestive system, other than an inflamed stomach and bleeding from the ileum. Her blood pressure was hyper and her hemoglobin count was low. She became so weak that she also contracted pnemonia from the hospital stay and had to be rehospitalized and then was transferred to a rehab facility for agressive therapy. Even though her neurologist knew she'd been bleeding from her stools for several years, was taking Anti-inflammatory medications, and had a coronary obstructive history of triple bi-pass and stoke, she still increased her dosage of the Aricept from 10 mg daily to 20 mg daily, even though she hadn't graduated to the severe form of Alzheimers yet. From all the doctors that examed my Mother during this critical life-threatening time, none of them attributed her problems to the Aricept. It was after I had read about the side-effects and took her off of the medication myself, that she began to get better. No more gastritis, no more confusion and dizzyness, no more hallucinations, and her appetitie is back. She will never get back to where she was before she'd began the Aricept, because her digestive system is "hashed" and the only food that she can eat now, so as not to start up the bleeding is very very bland food. A leading consumer advocacy group says that the highest dose of Alzheimer's treatment Aricept is dangerous and ineffective and should be removed from the market. Data shows that the 23 mg dose of donepezil is significantly more toxic than the 10 mg dose. The public citizen petition asks the FDA to warn doctors and patients against taking 20 mg of the drug a day. Be aware that cholinesterase inhibitors (Aricept) causes bladder outflow obstruction, pulmonary disease and increases gastric acid secretion. Patients do not get monitored closely for these symptoms. Also, Aricept should never be given to those receiving non-steroidal anti-inflammatory drugs (NSAIDS).

luvpeople Apr 2012
My father was diagnosed with dementia this year and he is 79. He also has a brain tumor. I would like to know what type of reaction can occur by giving him aricept and lexapro. What other types of natural remedies are better than taking these drugs? He takes Lexapro to help him to reduce his anxiety but I notice that he is more sleepy. I just think that sometimes these medications can be worst than the disease.

wuvsicecream Aug 2011
KariSue I do know that aricept and highblood pressure meds (lisinopril)cannot be taken at the same time of day. This was explained to me by the pharmacist after Dr. did not specify this danger. My Mom did very well after she took aricept in conjuction with namenda yet she started in earlier stages of cognative impairment dementia. I do know if discontinued for any length of time it can cause a reverse effect and make the dementia worsen. She also was switched to generic brand, due to Insurance coverage and seems stable. She is in a NH and was "way off", "unstable" because her room had to be changed. The new room is like a mirror image of the original room, just on east now, was on west, same view she still has window side but this confused the heck out of her. She never asked to go home or leave prior to this move. After the move she remembered her stuff being moved and thought she was going home, so anyone but me that went to visit she said, "oh your taking me home?" After a few weeks she got used to the new room. With my own experience with my Mom, is that routine is key to less stress. If your mind is clear from confusion you think better. If you sleep well you think better, if you feel well, etc.. If you change scenery you confuse an already confused mind.

darrobertson Aug 2011
My mother has been taking Arricept 10mgs for about a year. At first I thought it helped her but now I think we are wasting her money but I am afraid to stop it as I really don't know if it is helping her or not. She has terrible Sundowers; but the dementia can appear at any time. She has lately been talking about her Mother as if she, her Mother, is here. She has done this off and on for several years . My Mother is 96; her Mother died in 1939. I never knew her and My Mother never said much about her as I was growning up. Dementia is so difficult to deal with ; I never know what to expect when my mother starts to say something. We do everything we can to avoid an argument ; that is very upsetting. I don't really think going by your old home caused your husband to react the way he did. I think it is Dementia talk though the medications could certainly be a contributing factor.Please mention these things to your husband's DR. surely he will have an answer. Please let us know what you find out. Carol

anonymous101100 Aug 2011
The daycare in our area has a contract with a PT company and a pt room just for it. They will pick you up, you can spend the day or for lunch, get a hair cut, etc and have your PT right there.Daycare would keep him busy too and walking, thats so important. Good luck.

jeannegibbs Aug 2011
What about a gym or the Y? Those would have hours after your work. Or a rehab place with evening hours? Water exercise can be done but almost anyone, on some level. Getting the body parts moving is a way to ensure continuing to walk a little longer.

KariSue Aug 2011
My husband is not on oxygen, and his breathing has improved somewhat as he has lost some weight. He is very unsteady on his feet and uses a walker even in the house. Even that hasn't stopped him from falling 3 times in the last month. He is quick to tell me that he didn't get hurt because he doesn't want to go live in a care center. He lived in one for 6 months in 2009/2010 and wants to live at home. His neurosurgeon who did his 3 neck surgeries told us that if he doesn't start exercising, there will come a time when he won't be able to walk at all. The problem is getting him to physical therapy, as I have a full-time job. The only time physical therapy aides have come to our house is for a couple weeks after he was discharged from the hospital. They provide a booklet of exercises, work with him a week or two, then are gone. He just sits in his recliner all day. I have tried to get him to take a short walk after I get home from work, but the extreme heat the last few weeks have made it impossible for him to breathe outside in the heat if he exerts himself at all. You are right that exercise would give good benefits to him, but I haven't figured out the logistics of how to accomplish this.

jeannegibbs Aug 2011
The doctor is telling it straight -- the dementia pathology can't be pinpointed until autopsy of the brain. Research that compares diagnosis while the patient was living to actual findings in the brain upon autopsy show a not-very-good rate of diagnostic accuracy. So you can't blame the doctor for not wanting to say, "I'm ordering this for Alzheimer's", or Frontal Lobal dementia, etc. She's just ordering it because it helps some dementia patients and it is worth trying. If 10mg doesn't do anything, I doubt 23 would, but that will be the doctor's call. My husband takes a ton of pills, too, but Aricept is very effective for him. I doubt the number of pills is the problem, but there could be one or more that doesn't play nice with Aricept.

Is your husband on oxygen? It would seem like being able to exercise some would have a big benefit.

You certainly have way more than your share of challenges to deal with. My heart goes out to you.

KariSue Aug 2011
My husband was to be on the drug for one month. The doctor said it could take 3 weeks to see any difference. He will go back to his doctor on August 10. I don't see any changes for the better in his memory or cognition. He is on the lowest dosage; his doctor said there are 10mg and 23mg doses. I don't know if an increase in dosage would do any good or not. He takes so many other meds (5 psychiatric drugs, a med for high blood pressure, a med for urological problems, a thyroid med, 3 meds for asthma, a nasal inhaler, a med for gastro-esophogeal reflux, a med for osteoporosis, a med for constipation, a med for nerve pain, a muscle relaxant, a narcotic pain patch, and a narcotic pain pill for breakthrough pain. And he takes all these every day.

He has multiple diagnoses of a variety of conditions. His doctor said he is likely too young for alzheimers, but it is definitely some kind of dementia. She mentioned that a definitive diagnosis of some kinds of dementias and alzheimers can't be made until autopsy. She feels that his declining cognition is likely due to long-term effects of his brain being without oxygen a couple times during 2 suicide attempts years ago. Another of his doctors feels his problems result from the long-term use of too much medicine. Added to all this, he has a severe lack of mobility, due to physical deconditioning. He can't exercise because he can't breathe when doing so, and he can't breathe because he can't exercise.

jeannegibbs Aug 2011
KariSue, my heart goes out to you. This is a very difficult thing to face at any time, and at such a young age it is doubly difficult.

To watch some of the commercials for that drug you would think it was a miracle. For some people it can be very effective. What did the doctor say about how long it should take before you notice anything? How long should you continue using it? Did the doctor caution you to look for any particular side effects? I don't blame doctors for prescribing this drug for people with dementia -- it might help. It does for some people. But I think it should be considered a trial, and not a permanent medication until results are seen.

What is your husband's diagnosis?

KariSue Aug 2011
My husband has been on generic Aricept for 3 weeks. I do not see ANY improvement in his memory and cognitive function. He continues to have bad days and better days, rarely good days. He fell today while I was at work, but says he did not get hurt. He does take anti-depression meds and anti-anxiety meds as well as a boatload of other meds (20 different ones in all). I am aware that I am going to have to make plans to place my husband in a care center when safety when I'm not home becomes an issue. I never thought we would be dealing with things like this in this decade of our lives - my husband is only 55. I thought Aricept was supposed to slow the progression of dementia, but unless it takes longer than 3 weeks to see any improvement, the drug doesn't seem to be working for my husband. Maybe it is because he takes so much other medicine, I don't know. And maybe I was expecting it to be a "miracle drug".

jeannegibbs Jul 2011
kvetch99, I think the key here is, ineffective for what?

Eight years ago I was given about a half a dozen meds, sequentially, to treat anxiety. Turned out I had diabetes, which my doctor failed to recognize in spite of text book symtoms. None of those anti-anxiety pills did a darn thing for my blood sugar levels, and I wound up in ICU. Now, those pills might be effective against anxiety, but I wouldn' know -- I didn't have anxiety! :)

Aricept was developed to treat Alzheimer's disease. For that it is of marginal or questionable effectiveness in most patients. I think those television ads that make it seem like a wonder drug are immoral. I can see why the VA would not want to waste resources on such a small potential benefit.

But it turns out that Aricept and that class of drug is far more effective in treating Lewy Body dementia and Parkinson's with Dementia. The brain pathology in these diseases is quite different than AD. My husband (85, LBD) has been taking Aricept (and now a generic) for 8 years, with very observable and measurale success. Did it cure him? No, of course not. But he can think much more clearly than before he started the drug. His quality of life is significantly improved. That the VA won't supply Aricept for vets with Alzheimer's makes some sense. That they won't supply it to vets with Lewy Body Dementia seems very strange. (I don't think they should supply anti-anxiety meds to control diabetes, either, by the way. :))

I commend you for charting your dad's behavior and monitoring closely the effect of drugs and absence of drugs. Your father is lucky to have you as his advocate. I don't see a mention of your father's diagnosis. In any case, he should take only the drugs that are effective for him, and it sounds like you are doing a good job of monitoring that.

I think that I am doing a good job for my husband, too, and I'm very satisfied with the approach of the specialist he sees at the Mayo Clinic. As it turns out, several drugs, including Aricept, are effective for my husband. But the same principle applies -- if it isn't working, don't keep taking it.

Wouldn't life be easier on caregivers if one size did fit all in treating elders?

kvetch99 Jul 2011
According to a nuerologist and a gerintologist at the Veterens Administration hospital in Los Angeles, these drugs are both ineffective and can have a great deal of unwanted drug interacion. There is also the issue that hydration must be increased and anyone who cares for an elder with memory issues knows-hydration is a daily battle. The doctors to whom I spoke both said that these drugs where trialed at the VA and were considered to be without value thus they do not supply them to Vets. Interestingly, during the time I was taking my father to the VA they were terifficabout supplying anything he needed. Another Dr. had my father on Arecipt for a period of one year-his status continued to decline. We have had him on no interventive medicene for four years since and his decline has been on the same level as it was when he was medicated. I do chart his behavior. We do not give him any antidepressents or anti anxiety medicene as it they are fraught with known negative side effects for seniors.

DPRAYS Jul 2011
THERE IS NO DRUG THAT DOES NOT HAVE SIDE EFFECTS. AND, SIDE EFFECTS ARE INDIVIDUAL. DO AS MUCH RESEARCH AS YOU CAN. LOOK FOR ALTERNATIVES. ALSO I WOULD LIKE TO INTRODUCE YOU AND EVERYONE ELSE TO A WEB SITE. IT IS CALLED BEINHEALTH.COM. THE BOOK IS A MORE EXCELLENT WAY BU HENRY WRIGHT. CHECK OUTTHE WEBSITE, GET THE BOOK AND READ IT. YOU WILL NOT VIEW ILLNESS THE SAME WAY ONCE YOU HAVE. I HAVE BEEN CARETAKING MY MOM SINCE JAN'08. I AM AN ONLY CHILD. I RECONCILED WITH MY DAD AFTER 36YEARS AND BURRIED HIM IN MARCH, 2011. I LEARNED ALOT FROM THIS TEACHING WHICH AIDED ME IN MENDING FENCES WITHMY DAD AND CONTINUING TO CARE FOR MOM. AT PRESENT, I HAVE MOM OFF MOST OF HER MEDS WHICH HAS MADE A BIG DIFFERENCE. I DO GIVE HER AIRICEPT, BUT THE LOWEST DOSAGE POSSIBLE. INSTEAD I GIVE HER OMEGA 3X A DAY. SHE IS ON SENSISPAR FOR KIDNEY FUNCTION AND RESPIRADONE TO HELP HER SLEEP. I GIVE HER FOLIC ACID WHICH IS WHAT PREGNANT WOMEN TAKE TO HELP REBUILD CELLS. AND I GIVE HER GLUCOSAMINE AND CHONDROTIN. I WILL NOT ALLOW THE DR'S TO DO WHAT EVER THEY PLEASE WHEN I TAKE CARE OF MOM 24/7 WITH "NO RESPITE." CHECK OUT THE BOOK WHICH IS WRITTEN ON THE PREMISE THAT ONE SHOULD ALWAYS BE HEALTHY AND NEVER GET SICK WHICH IS A MORE EXCELLENT WAY.
BLESSINGS AND I PRAY FOR ALL WHO READ THIS BOARD.
DPRAYS

triciaproffitt Jul 2011
My father was put on Aricept and went off the deep end. His behavior worsened and we, with the guidence of his physician, took him off of it. Same with my mother-in-law years before. Dad is now on Namenda and seems to be tolerating it just fine and since we weren't sure how fast he'd decline off of it, things seem to be alright.

Absolutely, confer with the physicians. Even if your husband was taking no other mediction, the Aricept might be the incorrect choice of medication for him. If I understand you correctly, you saw a marked difference in his behavior after he began the medication? I, personally, am wary of generic brands due to the fillers, but that's just me. Check back with the docs.

johnnycares Jul 2011
I do not know what could be the right answer for this problem either ,but my wife started on aricept and I took her off it and she has been on Namenda for two years and she is not responding to its use. I am concideing taking her of them meds.

moonjac Jul 2011
I don't think the Aricept would do this. It is a progression of the dementia. He is loosing the short term memory but will remember the things from years ago. The drive by the old house probably triggered the last reaction. My Dad was on Aricept for over 3 years and the only thing to worry about usually is stomach upset or diarrhea when beginning

pvrwilson Jul 2011
As to the drugs causing the need to urinate frequently, how old is he? It is common for most older people to need to go every 2 to 4 hours night or day.

jeannegibbs Jul 2011
The article you site, luvmom, shows that doctors get bombarded with heavy drug advertising and "honorariums" and free trips and all kinds of perks at "seminars" to try to influence them to prescribe certain drugs. I'm aware of that. I do not think it is a good practice, and I hope regulating agencies and the profession itself will clean up that act. It also applies to researchers whose work is supported by commercial interests. It raises questions about objectivity. But I have still not seen any evidence that doctos get paid directly based on the prescriptions they write.

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