I know there isn't a pat answer to these questions but I still need to ask them. Kathryn’s been on both Aricept and Namenda since since diagnosis on April 30 of 2008 and will reach 2 years at the end of this month. Her ALZ does seem to have started moving forward again slowly (about 6 months or so back) and Kathryn is in full stage 5 with 3 or 4 of Stage 6 and may be having trouble walking (she walks very slowly with her knees bent at all times).
1. If you had a loved one on Aricept and Namenda stop working how did things go when they stopped being effective? 2. Did the ALZ advance faster than you thought it would? 3. Did it speed ahead to where it would have been had your LO not been on Aricept and Namenda at all? 4. Did it continue as what is considered it’s normal pace if there can be such a thing as its normal pace? 5. Were there other meds to take their place? 6. Did it stop working after 2 years?
My wife has been on Aricept since 11/07 and then started Nemenda a year later. She is having motor skill issues and walks very slowly too. She does not have dementia, she just seems very simple minded. I have heard that the drugs only work for 2 years also but I have not seen the good day, bad day thing in serveral months, it is like she has been more stable. Does that mean the drugs have stopped working?
Anchor, we've had limited experience with Aricept/Namenda. DH was on both for 5 months in late 2008. Dr took him off all meds to determine which ones were causing drug interactions. I was terrified that he would become worse, but he didn't. He seemed to plateau and maintain for at least 6 months or more, but lately has been losing more memory and functionality.
This subject comes up from time to time. Do a search for other threads because they are interesting.
My husband has been on Razadyne for nearly 3 years, and on Namenda for about 2.5 years. I have no intention of taking him off the drugs. One of the reasons that you see the 2 year information is that when they did the drug trials, they lasted 2 years and most of the patients on the drugs were doing better than expected at the end of the two years.
My husband's 18 month plateau has ended and he is worse than he was, somewhere in stage 6 at this time. But, physically he is still in stage 5 for almost everything. I'll keep him on the drugs until stage 7 starts because the longer he stays out of diapers, and doesn't start falling or having walking difficulties the better for both of us.
Some people took their LOs off the drugs and nothing happened. Some people took their LOs off the drugs and what happened next was noticeable. Some people were able to get their LOs back on the drugs and back to close to where they were. But some people didn't get that lucky. Personally, I am not taking a chance that my husband is one of those people who go right to where they would have been without the drugs and never get functionality back.
My DH has been on Aricept for 7 years, Namenda for 5. Dosages were lowered 2 years ago; he has not declined very much since. I will keep him on the current dosages since it may be helping to slow the decline. He is 86, so if I can keep him at this plateau - hopefully, he will make it through without going through the later stages. He can still function pretty well, shaves, showers, brushes teeth, dresses, is a little wobbly walking, but he keeps trying!
The main thing is that you have no idea when the medications stop helping. Our spice will continue to slide whether on the pills or not, but will slide slower on the pills. If you stop the pills and they were still helping, they will go down faster and you won't be able to regain that loss.
Should you decide to take her off of the drugs, do so slowly. The body doesn't do well to being completely cut off to medications like these. If you want to take her off for whatever reason, then cut her dosage in half for a week and make notes of any changes...then you can go back to the full dose, or after a month, leave her on half a dose for a while.
Having them able to help you dress them, and walk (even though unsteady) and chew and swallow (once they lose the ability to use a fork or a spoon ) is a help to you or whomever is caring for your spouse.
The medication just keeps most of them ambulatory longer. Most will end up bedridden sooner without it.
However, that said, there are several here at Joan's who had to remove their spice from Razadyne (or Aricept) and Namenda for various reasons, and their spouses are still ambulatory.
Once again, if you have seen one Alzheimer's patient, you have seen one Alzheimer's patient. No two react the same way or do things in the same stages. We just do the best we can.
I have no intention of ever taking Kathryn off of them unless they doing harm some how. I will continue to give them to her as long as there is the slightest hope they are helping her. I just am trying to prepare for any possibility in order to provide Kathryn with the very best quality of life I can by being prepared when they do lose their effectiveness. She doesn't understand what is in her future but I do and it scares the hell out of me for her. It really hurts me to she her confusion when she tries to do the simplest thing and see her cry because she can't understand why she can't something. If Kathryn could stay right where she is now for the rest of our lives I could handle that, no problem.
I'd take it for her if I could.
How sad is it when the only thing you pray for is your spouse never reaches stage seven. I really hate this disease.
i took my spouse off the drugs several yrs ago due to side effects after taking them for many yrs. i saw gradual declines over time and i am not sure that the declines would have happened regardless of the meds or not. its something we can not know for sure. most are scared enough of the consequences of the 'whatif's' that they keep their spouses on the drugs thru late stages. and while on the drugs you cant know if the decline would be more severe or the same without remaining on them. my own opinion is the disease lasts thru the 7stages for a purpose. if any good is to come of AD its the fact that the caregiver adjusts thru time and stages- while we fight tooth and nail to preserve whats intact for many yrs. once end stages enter the picture we can almost come to reason that its time to allow the process to unwind. its taken many yrs for me to accept that the end is inevitable and nothing i do will stop the process- but thankfully i had the many stages and yrs to get to this point of acceptance. meds or no meds you will know when its right to discontinue or not. divvi
Thanks Divvi, I guess I just haven't reached the point of acceptance yet. I am not sure I ever will. Let me restate that. I guess the time will come when I will. I just can't see the acceptance in my mind yet. Maybe whatever it is in me that makes it hard for me to accept it is the same thing that will make me get though it too. I just want so bad to help Kathryn get though it as I know is the goal of everybody on here to help their spouse and each other here in any way they can.
Funny how these subjects come up JUST when you need them!
Since the BAP trial has ended, there has been much discussion about discontinuing the Arcept and Namenda. Because of the strict rules with the study, medications remained the same. We have a difference of opinion at this point. One neurologist has said that it is the same as my DH drinking water. The study doctor believes that both medications should be considered a lifetime deal. He explained that he has seen far too many rapid declines after stopping the medications. Is this true? I don't know.......but now I don't dare take a chance. DH hasn't had any side effects from the drugs, but the costs are killing us. Well, guess we'll just have to deal with that for now.
At least with the open label the doctor can increase some of his medications, i.e. antidepressent and seroquel. Guess it is worth a try.
Ann, as has been said before, until you take them off you never know if they are the % that are helped by it. It becomes an individual call as to whether to continue or stop.
We decided a while back that once he is not longer able to have any quality of life (participate, take care of daily needs, etc. becomes incontinent, doesn't know me) then all the AD drugs will be stopped if they are not stopped beforehand. ''Quality of life' will be my decision when he gets there. He doesn't want to linger on for years like his dad and I don't want him too either. He has been on galantamine since Nov 08 and started Namenda this last January. He seems to have had a slow steady decline and not slowed even with the Namenda. I have cut the Namenda to just the 10 mg at night because it was making him so tired during the day that he had no energy to do anything. That is not quality of life -IMO.
Because of this I lay in bed at night wondering whether to continue with them. Wonder whether the decline would have been faster if he was not on the drugs or if they have slowed it. It is a haunting question that is an individual decision (unless you have family members that are there by your side and can give their input). I encourage any whose spouse is in the early stages and can, to discuss when they want to stop the medications and let the disease run its course as fast as possible. I compare it to when a cancer patient has to make the choice, when chemo has not worked, to stop and live what life they have left and let the cancer run its course.
When he goes to the neuro in June I will discuss with her whether to continue the Namenda at the 10mg at night. She is one of those that specializes in Alzheimer's but I also believe that she does not believe the current drugs are of much value (she knows they help only a small percentage). She doesn't hold out much hope for the current studies either. I believe she also is one for letting the patient's family make the final decision whether to use or not to use the drugs.
Charlotte and Jim, I have come to the same conclusion about quality of life. I'll continue the Exelon as long as there is any chance that it may be helping. Rapid decline lately. I'm going to visit another nursing home this afternoon. No, we're nowhere near there but "better sooner than later."
I agree with the above comments. My DW started on Aricept several years ago. Then the Excelon was added which after a short time thats when the problems started. We stopped the aricept and shortly after and started the namenda. Then she started having problems with the excelon and we stopped that. Now she is just on the namenda and so far is doing ok. The decline is still there becasue as was stated above nothing really stops that from happening. Our DR said at the DX that nothing available at this time will stop the decline and it appears he was right on. She is also on Lexapro and Ativan which help with the mood swings and outbursts. They also help her to relax and rest quietly. We take it as is comes so that we don't get overwhelmed with the changes. Her computer is her best friend now and she spends most her waking hours playing games on it. She doesn't venture into the unkown areas just stays with the games she is familiar with but thats ok. Whatever keeps her mind active is good. We pray for all who have this dreaded disease and may God bless you all.
The reason I asked the question wasn’t to help me decide when to discontinue Kathryn’s Aricept and Namenda. It was to help me gain some knowledge that would assist me in preparing for the future so I would be able to continue to give Kathryn the best quality of life I can when they do start to lose their effectiveness.
Kathryn and I talked years ago about how we would know if one of us had reached the point where the other had to decide if it was time to let go or not. We decide together that once whichever one of us was on life support we would discontinue all life support and give only comfort once one of these two conditions was met:
1. If one of us was considered terminal by two doctors (no chance of recovery). - or – 2. If the surviving spouse knew they would not want to continue beyond the point that the other was in at that time.
I would not even consider discontinuing Kathryn’s medication as long as she is having any kind of quality of life. I will know when it is time to let go. Letting go, however, may be much harder than I thought. But no matter how hard it is I will follow our agreement.
What comes after that I do not know because I can not even start to imagine life without Kathryn.
MY dw is on namenda, and I might as well be giving her TicTacs.....I have not noticed many benefits, and often wonder if she would be worse without the namenda..But I fear that perhaps it may be working, and I cannot imagine what it would be like if they worked.
DH tried aricept and at another time exelon patch -- no discernable difference and maybe a little more agitation so I stopped both. Few months ago dr put him on namenda. I'm not sure it helped so I took him off that also -- it was over $300 and not worth the expense. Except for aspirin, BP and cholesterol rx he now only takes zyprexa and lexapro. He's fairly mellow most of the time NOW. I won't try anymore AD meds or potions. All I'm interested in is keeping his behavior controllable so he can stay home.
We have came to a point where were not sure whether the namenda is working or not, but she feels ok about taking it so we will continue the meds as long as no bad side affects show up. Quality of life is all we are looking for at this point and this seems to be the best recipe. if something changes we will cross that bridge when it happens.
My hb has had problems of being really tired to the point of exhausting since going on Namenda. I cut back to just the 10mg at night but he still is having the problem. Yesterday we finished taking the canopy apart and packing it up. It took about 2 hours but he was exhausted, almost to the point of being too tired to eat. This happened before when we put it up all he could do was set his plate on his chest (we don't eat at the table but sit in chairs) and didn't have the energy/strength to eat. He was too tired for the mile drive to the restaurant. We talked last night while we were eating at Panda Express and he wants to stop the Namenda altogether to see if it is what is causing this sudden energy drain. He would rather go down faster and be able to function VS too tired to function and enjoy what life he has left. So now I have to decide what to do - probably cut down to half a pill at night for a few days or do I just stop altogether? When he first started the Namenda and I told his neuro the tiredness and how he can't function, she said to give it a couple months. Well, it has been that long.
I didn't think Namenda and Aricpet were helping my husband any longer. He had been declining very fast. I spoke with his neurologist and he told me that it was would be typical to see a fast decline after stopping them. That's exactly what I saw. I don't know if it was still part of his steep decline prior to taking him off or it just extended it. Either way, he has finally stabilized after 3 months of being off of them both.
Charlotte, my DH has come to the same conclusion. About a month or two ago, he told me he wanted to go off both the Aricept and the Namenda because both list exhaustion as a side effect. He is capable of making the decision, but I asked him to hold off and discuss it with his primary dr. at his next appt. on 4/26. Whether he will remember by then, I don't know.
He has been off the Namenda for a week now. He is still tired but that is due to the cold/cough that he has had the last 2 weeks. I have noticed though that his thinking is clearer and he remembers a little more, so maybe he will not work with him. I will hold onto the Namenda I have a while longer - I had just ordered another month right after we decided to stop it.
My husband is on aricept and namenda and I can't get him to sit down and rest.He has so much energy,he iss like the energizer bunny.Thank goodness we have a lot of outdoor work,in the winter he drives me crazy,cleaning,cleaning,I sit and play solitaire to keep my patience and not upset him(upsetting him is a BADDD thing)So I guess I should be happy he has not had the sane effects from the medicine most have had.
My husband has been on Exelon patch for 5 years. I never started Namenda. He is now removing the patch most of the time because it itches him. I asked the doctor and she will not discontinue it. My doctor gave me a prescription for a higher dose of Exelon which I have not filled yet. Since I am placing him in an assisted living facility tomorrow and will likely change doctors, I will wait and see what they suggest. I know with my father they discontinued everything once Hospice got involved.
I think it is also fair to ask what happens when they start working
I think most of us who are caregivers for an ALZ patient start administering these on a doctors suggestion, not knowing what to expect, and not knowing what they are doing
We are told catagorically that they do nothing for the treatment of the disease itself, but are for symptomatic relief
Since you can't establish what would have happened had they not been prescribed, it is pure conjecture that they are doing anything at all, other than making some drug company in Ireland a lot of money.
A company by the way, who was recently in the news as they attempted to do end run around the laws that allow drugs to be produced generically after the initial patent runs out
No doubt they rue the day when someone can sell their magic powder for a fraction of the $12 per pill that they charge
My DH was one of the "lucky" ones, for whom Aricept did work, for a short time. A lot of his symptoms actually disappeared, and he reverted from stage 5 to stage 4. Because of that, I figure that we got at least 6 months, or possibly more, of a quality time together that we could use to do some things together that we would not have had been able to do otherwise. I doubt very much whether my DH would have done a complete backwards step on his journey in dementia land if the Aricept had not been prescribed.
That being said, I would suggest that after a 3 month trial, if there is no improvement or delay in onset of symptoms, it would seem pointless to keep giving a drug that is ineffective.
Is Aricept still working for my DH? Not likely, but his doctor thinks that it might be helping to smooth out some of the peaks and valleys between "good days" and "bad days". And perhaps it is.
I think that is the most frustrating is not knowing if it is helping. You don't know until you stop it. My husband was put on galantmine early on and there were no signs of improvement. Last year I said something to his neurologist about stopping it and she said no - it might be helping. Well, she doesn't live this long lonely road. I know I have spoken often about stopping it. When he missed those two days and nothing changed, gave me encouragement to do it, so getting close. He actually never wanted to go on it - didn't want to take anything that might string it out longer, but I was ignorant back then about this disease. Had I known then what I know now - never would have start it. He could not tolerate namenda, so no problem stopping it.
Charlotte, On another thread, marsh wrote that, "[Namenda] may be recommended by your wife's doctor, but you are free to refuse if you don't think it is doing any good." Since marsh is a doctor, I assume that he knows what kind of pressure doctors are allowed to exert in this kind of situation.
But two years ago, on this thread, CO2 wrote that she asked her husband's doctor to discontinue Exelon but the doctor refused and instead, put him on a higher dose! And now you say that your husband's neurologist is refusing to discontinue galantamine. How much control over patients are these doctors supposed to have, anyway? I thought a patient had to give informed consent to any treatment. If you are your husband's health care proxy, doesn't the doctor have to have your consent for him to take galantamine? Maybe you should get rid of this doctor.
Bob has been on Aricept since '07. About every year or so he seemed to lose ground and they upped dosage and he would get some gain & stability again. He's been on the 23 mg for about 4 years. Dr. and nursing staff said they never saw someone improve/get so much gain from it. About the same time he began the 23 mg dose, Namenda was added. That dose was also upped as he lost ground with some gain. During that time he has also taken an antidepressent, and Atavan. I think he was lucky these worked for him. Since he tolerates them without ill effects, I see no reason to discontinue them.I also know when he was in the bad LTC facility I had a week of his behavior falling apart and on questioning a new nurse discovered she hadn't given him his meds for 5 days! (Her excuse was, "He refused". I told her he wasn't competent to refuse. (I've noticed that seems to be a sign of the bad places - no bathing for days - "He refused". Well he's never refused anything in the good place he's in now - they put his pills in chocolate pudding and give him some water and the rest of the pudding. They play Beatle songs and get him to sing in his most hated bathing ritual. He was so bad when diagnosed he was almost catatonic, and the Aricept almost brought him back to life. So it can work for some.
It's nice to hear that Aricept has worked for someone. I wish it would work for more people.
The inability to administer medications has nothing to do with a patent's legal competence to refuse - it's a matter of how to get a pill into someone who is actively resisting. It's not only in bad facilities that patients refuse to take their medications, although I agree that the facility your husband was in should have found a way to overcome his resistance before 5 days had gone by. My husband is in a good facility and during every med pass, there seems to be at least one resident who refuses his medication, even when it is put in chocolate pudding/applesauce/ice cream/a "sticky sandwich," etc. The policy there is to offer it 3 times before giving up and trying again later. My own husband pretends to take the stuff but hides it in his cheek and spits it out later. His stubbornness is both exasperating and funny. In some way, I also admire it for it.
At the "bad" facility they would say he refused to eat. I started coming in at dinner and found no one had led him to the dining room and his dinner would be sitting there. He had no idea when dinner time was or even where the dining room was at times. Occasionally they just put it on the desk in his room. If someone didn't sit him down and remove the plate cover, he had no idea there was food there. It was maddening trying to make sure he got the care we were paying for. The week of no meds, where they called me to complain about his "behavior", it was new people working. But at one point where the same thing happened (behavior went off the edge) I finally asked to see their records and discovered they were giving him 10 mg Aricept when he had been on 20. I'd find no one would fill his water pitcher, no one would come take him activities. The place he is in now is completely different.
mariposa, the examples you cite are similar to the ones we've had even though DH has only been in LTC facilities sporadically. It baffles me...these facilities advertise and pride themselves on providing excellent dementia care, however let the slightest resistance happen and they call me saying he's aggressive or if I make too many inquiries I'm labeled as "difficult".
mariposa, I didn't mean to imply that your husband's nursing home was not at fault. Even though people with dementia actually do refuse to do things, it's just dishonest to say that someone who is unable to eat without help is "refusing" to eat. And if a nurse can't trick a patient into taking a pill, they will have to figure out something else or reformulate the drug.
I am quite familiar with facilities like the first one your husband was in. I knew someone who walked into a nursing home under her own power and after only three months was wheeled out, clinically malnourished and dehydrated, unable to walk or even sit up straight in a chair, and seemingly in the end stages of dementia. It turns out that she had been parked in a wheelchair all day and was so stoned on Seroquel that she was not able to lift a spoon to her mouth, so they just took the tray away without a bite being eaten. Although she was never able to walk again, she did learn to sit up again and within weeks, she was in an apartment with a full-time caregiver, demanding that someone buy her a dog and move her piano to her new place. (Both demands were met.) She had more than two years of good life after that, before dementia overcame her cognitive process.
By coincidence, when I went to see my husband today I was told that he refused to take a shower last night, although they tried three times. So I sat with him and told him (over and over) about the shower I had just taken and how good it felt and asked him, "Don't I look nice and clean?" and "Doesn't my hair smell good?" When an aide became available, off he went into the shower and this time it worked.
LFL, These bad facilities do not baffle me. Their ads about providing excellent dementia care are just baloney. And they do not pride themselves in anything except making money. A big problem is that it's hard for the ordinary consumer to distinguish the good places from the bad until after a family member had been admitted.
Last Saturday when I did up hb's meds for the week, I dumped the medication out of the capsules and put the empty ones in the med box. So all week he has not been taking it. Tuesday he did have diarrhea and coughing which I found were withdrawls. In hindsight I should have started with only emptying half but too late now. I have seen no change in him, maybe even improvement. When our friend moved to her son's he could never remember where she moved. The other day after I hung up from talking to her, he asked: is "P" still parked at her son's? Today when we were out driving to the store, he was saying something that he needed word he usually doesn't use. IN the past I come up with it, but he did this time. How long it last, who knows, but I do know that he will not go back on the galantamine. If it helped, it is evident the benefit is no longer there.
When I was researching the withdrawals of galantamine, I was surprised to find websites where people us it to get high and go on 'trips'.
I have until September to figure that out. Not going to loose any sleep over it - at least not yet. I did research to see if there are any other benefits found from it like behavior and did not find them. In studies where they did 36 months the percentage of lack of decline was only a few percentage points - no where near what they expected. I definitely like that he is remembering things. Today he went to check the mail and was gone for a while. He said Barb that works in the office was outside on a break and he stopped to chat with her. He has never remembered her name the two years we have been here. Just a fluke? who knows
I cannot say what this person meant to me for now but it was a non family member. I met a person I'll call Jack a few years ago when he was discharged to home from the hospital after having an unclear stroke. He could not move his right side well, and could not even lift his right arm. I read through the material on Namenda carefully and found that it warns of potential one sided weakness. Fearing a side effect I spoke with doctors who took him off the drug as a trial.
Two weeks later he waved his right arm to greet me one morning. It was a pretty amazing turn around and made clear the fact that the drug had caused this problem.
I came here today to warn you good people that this could and did happen. Can also discuss other things. Had a family member who appeared at hospital several times with symptoms of delirium. Not only did physicians fail to treat her they even went so far as to "explain" this to us as follows: "It is difficult for families to accept it when loved ones have dementia but there is really nothing more we can do for her." -- yeah well Mom didn't have dementia. In fact she'd been correcting her bank on fine details just a few days prior to going into hospital.
In fact she was having a side effect from the drug Pradaxa. She perished from this not long after this conversation with doctors after they at the last minute did take her off of Pradaxa. It was just too late.
Just another thought about what can happen when doctors believe that they can diagnose dementia in one or two visits with a patient in hospital.