I know I should call the doctor on this, but, he was so insistent on dh taking aricept and was short with me when I hesitated.
He was on 5 mg for 6 months, then last month the Dr. upped it to 10 as he saw a sharp "decline"
He has been on the 10 mg. for a few weeks now. I notice a sharp chemical smell coming from him. And , he seems to be more confused this past few days than ever.
The only thing that I really like about it is that he sleeps in in the morning as opposed to getting up really early. Gives me a little time.
Anyway, I am considering taking him off it for at least a couple of weeks, to see if there is any difference. Side effects are gas which I treat, but I wonder deeply if it is robbing him of his mind instead of helping.
Don't know, welcoming comments. I can always put him back on it if it seems worse.
It is my understanding from the medical community that drugs such as Aricept may only help some AD patients and then only for a period of about 1 year followed by the disease progressing. Every patient responds differently. In the case of my DW, she was on these meds for 6 months, showed no effect and they were discontinued.
most drs who address the doses go for 5mg for a while then up to 10mg. and most 2xday. some folks just cant tolerate a huge increase say double in a short time. if its just once a day maybe 5mg morning and 5mg in pm? or maybe keep the 5mg and ask about adding the namenda 5mg to accompany the aricept. these 2 usually work well together. alot of these guys dont tolerate the meds and side effects can come at any time. i would think after 6mos the dr would want to increase. but if you notice more confusion then by all means call and ask. remmeber you PAY for them to listen. if your dr doesnt work with you but against you its my opinion and some others here that you change drs. things will only get more dicey as stages and time increases and meds play a huge part. esp with a dr who doesnt try to work with you. divvi
tell the dr about your observations...no one spends time with him to know or recognize the changes. Before the neuro prescribed namenda, I told him I was concerned because namenda increased the persons aggressiveness from what I read on the alz.org site and that DH was already physically aggressive and abusive. He argued with me for 20 mins, showed me the PDR which documented that aggressiveness was not a common side effect and sent us on our way. You guessed it-2 weeks later after the increase from 5mgs to 10 mgs, DH hit me and I had to call the police before he killed me. Call the dr.
Coco - I'm sure you know but for others that don't know. Please reduce his meds slowly. Quick withdrawal can be really tough. Also I don't know when you are giving him his med but it seems giving his meds in the morning instead of night might make a big change. Nightmares was one of the complaints when giving it at night.
Hubby's on 10 mg and it seems to be working really well for him. He's plateau right now.
Coco. My DH was on it for a while, at first 5mg then upped to 10mg. I too found DH had a chemical smell about him while on Aricept..and I noticed that he was very agitated and angry all the time, so Dr put him on Resperidal as well which made him worse. We had an insident where Dh was going to self harm with a big knife.. so decided to take him off all meds and it's amazing how much calmer he is,even to being very mellow. He's very polite to my friends...and i think I'm now coping a lot better than before. Of course everyone is different
My husband was on Aricept 10 mgs. for 3.5 years. About that time, he completely lost his appetite and, consequently, weight. I talked to the doctor about it and we agreed to stop the Aricept on a trial basis, as one of its side effects can be loss of appetite. In two weeks, he became much more alert mentally - it was like having the old Eric back. His appetite did not improve.
Coco - if you read a post by Dr Josh (he has his own thread even though he doesn't post anymore) he discusses how he stops the meds to see if they are working. You will have to double check (I couldn't find it) but I think he said that if the drug was helping you would know within a week or so. If he sees it is he will put them back on the med and they will often regain to where they were before coming off it. If you wait longer than 2 weeks, there is often no regaining.
You can discuss it with his doctor - stopping or cutting back dosage or decide to stop. When my husband was put on namenda we did not like the side effects and stopped it. I had spoke with the doctor about the side effects he was having and she said it was my choice. I think more than any disease with AD we seem to have a lot of freedom in what we do. That may be cause so much is unknown AND we are the ones that are with them 24/7.
She has been on Aricept for 4 years and Namenda 2.5 years. We have had NO side effects :-)
First time I stopped the Aricept it was for a week before her disability evaluation. She might have been deemed functional with the meds. Without the meds there was NO DOUBT she was disabled. I restated the Aricept and she returned to her previous level of function.
Twice I have forgotten our nighttime Aricept (10 mg) and Namenda and on that night she was up and down all night and I got no sleep. The next time I forgot she had a crying fit at lunch time that lasted 2+ hours and needed 1.5 mg of Ativan to stop. I now make a real effort to not forget.
Were these real withdrawal symptoms or just coincidence? I may never know - dementia being so unpredictable. The only way to tell if any drug for any disease is actually working is to stop it and risk the consequences. Sometimes (diabetes? Hypertension?) the consequences are severe. With dementia the risk is that their level of function might drop and NOT RETURN! (no longer dress or toilet)
As the AD advances it does eventually reach a tipping point where nothing helps and the meds are worthless. But with diagnosis and visualization of the damage not currently possible you have only the symptoms to guide you.
H has had atypical reactions to meds, especicially to depakote, the generic.
He, like others here have posted, reacted well to generic aricept @5 mg and so it was upped to 10. 23 was tried but increased delusions to he is back to 10 at night. He has FTD and is "very young", at 52.
H has also used lorazepam for many years with what I think is reasonable success. Now up to 3mg daily.
N would try other meds but not in the home environment with only me here due to the previous reactions. N recommends, but H refuses ALF so it is what it is; in the ALF environment, N would try other meds.
(BTW, your posts on another thread were wonderful beyond belief.)
Just read again your initial post. Tried discontinuing at 10 after year or so and the response was negative. I know some posters say that aricept and FTD are not friends but this is what happened. Not expected, but this is what has happened over the last couple of years.
My husband was on Namenda, Aricept and a BP pill. Dr had him increase the Aricept slowly to 23mg. The pharmacist asked the dr if he could give 2-10mg tabs instead of the 23mg. Pharmacist said it was just a money making thing to give the 23mg tab. Anyway, about 8 months later, maybe not even that long, I thought DH was declining too quickly. I took him off all his meds (slowly) and the BP pill. His BP was back to normal since he lost 35 lbs. For a few weeks he didn't seem any different. He is declining just as fast as he was while he was on the meds. From my observation the pills weren't doing any good. I wonder sometimes if the doctors prescibe meds so that we feel better thinking something is being done instead of nothing.
My wife's psychiatrist has eliminated all psych/ALZ meds now except for a small daily dose of Zyprexa. Her overall health and behavior have not changed and her quality of life, some days, appears better. The ALZ continues to progress "rapidly" as observed by the clinicians. However, I believe they are much more familiar w/seniors having ALZ slowly progressing for many, many years and not someone just 62.
You are all so kind to share your observations with me, it really helps.
You know, my main concern of course, is HIM, how he feels. He just seems like such a zombie, he was on the lower dose also, but, he seems even worse now. I just cannot put my finger on it.
M-man, I take your words seriously too, and it is true that it could be partially ME, just wondering, if it is working.
I cut his 10mg in half last night, and shall talk to the dr. soon. I won't totally stop it. The bloated stomach is horrible, and it breaks my heart to feel the stiffness in his body, this is supposed to be a side effect.
Coco: We did Aricept with terrible side effects, then went to Exelon patch, then to Namenda. The drs don't think any of it helped us and I agree with them. Discontinued all of it and I think it was the right decision.
Coco, Lloyd had been on Namenda and Aricept 10mg when he had his first "seizure". At that time the doctor stopped the Aricept saying it could bring on additional seizures. I have reduced his Namenda to one a day in the morning. He also takes Marinol 5mg once a day and his bloodthinner. The doctor wanted him back on Aricept, but I refused reminding him what he had said previously. I do not take crap from a doctor who sees my husband twice a year, but I am not changing doctors. I would have to start all over again and this doctor already knows what a bitch I am. lol
Coco--My impression is that the benefits of Aricept are generally so imprecise--some patients, for a relatively short period of time, only affects symptoms but doesn't slow the disease process, etc. I think a good doctor will take the patient off that drug if ANY ongoing side effects are present, because there's no way to know if any benefit is actually being derived from its use. (I'm not talking about the gastro symptoms that many have when they first take the drug--those should go away quickly as the body adjusts.)
Funny I was just thinking of adding to this thread and when I opened my computer, voila!
When he started taking the 10mg, about a few weeks ago, (up from 5mg), at first it seemed ok. Then after about a week, he got really agitated, and tossed and turned worse in bed, and even started getting a bit aggressive. He just did not seem right.
SO a week ago I cut the the 10mg. in half, back to his original dose. He seemed better almost immediately.
For now I will leave it at that. Dr. visit not for a couple more months. My poor sweet darling.
My husband has been on 10Mg Aricept and Namenda. The nuerologist increased the Aricept to 23 Mg and he began to get very restless at night, aggressive , and angry. When I went back to the 10Mg he reverted to his primarily docile self. I researched the 23 Mg and found that the improvement was very small and it became toxic in the body. I cant help but think it's all about the $$ because the 10Mg Aricept patent expired!
I have been cutting the 10 mg in half, kinda tricky they crumble easy.
I was thinking that just touching them so much might affect me.... suddenly, I will become a SUPER MEMORY< remembering not only my life events, but EVERYONES!
They would put me on the Oprah show, except, it is no more. lol
coco, i was given a box of rx'd syringes loaded with the smallest doses of haldol, ativan, and benedryl for my DH a few months ago to help him sleep by hospice dr.directions said rub into forearm 30min prior to bedtime. sure enough i rubbed it in and he got drowsy. what i didnt read was to be sure to use a glove to rub it in. hehe.. i took my bath right after and nearly didnt makeit out of the tub after the rubbing effects hit me from the meds. after makng it back to my bed, i think i slept better than DH! so yes, be careful handling meds. they can get into your system, even tiny amounts over time.
Oh divvi good thing you made it out of the tub-you could have slept there and been all wrinkled and prunie from the water!!! Coco let us know when that SUPER MEMORY kicks in,we may all want to start touching the meds more!
Coco - if you are going to have to refill the RX before going back to the doctor, phone him now and tell him your decision and ask for the lower dose tablets.