My wife did not tolerate aricept, but was on the exelon patch. After 2 or 3 years we decided to stop both the exelon and namenda. There was NO change in her condition. Some patients do notice some deterioration after stopping these drugs. Unfortunately, when they are restarted there is no return to the previous condition. Sorry I can't give you a firm opinion on what to do.
We just stopped the Aricept a couple of months ago after being on it for 5 years. He has been in a pretty steady decline in the past year or so. We agreed to stop them when the time came that they were no longer of any benefit. He also had the GI upset that is common with it. I have NOT seen any difference at all except that he no longer has chronic diarrhea. Yea for the little things! I am too afraid to withdraw the Namenda anytime soon. I have heard that there could be worse effects from weaning it off. Will just leave it for now. Don't want to upset the apple cart too badly.
Afew months after Sonny entered the NH,first he was weaned from the Seroquel , then Aricept , then the Namenda.Oh, stopped the Zoloft,also. He was less agitated and more content.Hope it goes as smoothly for you.
I stopped my husband's Aricept after he'd been on it for 2 1/2 years. He was 90 and losing weight, which is a possible side effect. He brightened right up and talked and was more like his old self until he died about 3 months later, at age 91. My conclusion was that Aricept helped him the first year, but not much after that, and that he did better off it once it was stopped.
I took my DH off of Aricept after 4 years. I had read a lot of previous discussions on this site about this subject and the consensus seemed to be that we are not really sure if it helps - especially after they've been on for some time. Most of us keep them on the meds just so that we don't accelerate a downward step, but it seems that there is no clear science that Aricept is effective.
Now, I have kept my DH on Namenda because I heard here that it helps with the agitation - and I don't want to risk him getting more agitated. Right now he is on Namenda, Gabepentin for the agitation/anxiety and Mirtazapine, an antidepressant. Only before a full moon (like this week) does he need any PRNs of the Gabepentin. Otherwise, he's pretty calm and content in the ALF.
I stopped it cold turkey. I am sure that it is probably a bad idea to do it that way but he is deteriorating so much of late I figured what the heck. I honestly have not noticed any difference good or bad. As most will tell you...check with your PCP. I just did it and the PCP isn't even aware yet. I am tired of her lectures to do everything possible to "treat" this disease. And, by the way, we have just seen a new PCP last week who has agreed to take him on. I loved him. Very kind and caring. That is what I told him that I was looking for. Someone that can just provide kindness and palliative care as we navigate this process. I am done with anything else invasive and futile!
I stopped my husband's Aricept after a couple years. It was first prescribed by his neurologist, but we stopped going to him, I brought up the subject with his PCP and she said that she thought the benefits shown in studies were so slight that they were outweighed by the possible side effects. She thinks most doctors prescribe it to make the patient and family feel there is something they can do.
When my husband stopped taking it I did not notice any difference but I had not noticed any difference when he started taking it either.
I talked it over with my husband's GP first, and Aricept was stopped immediately, with not apparent bad effects. Within two weeks, he was noticeably more alert and normal in every way. Two or three people noticed and remarked on his change for the better.
After he had lived in the ALF for a few months, we stopped the Aricept cold turkey. We didn't see any cognitive changes for the better or worse. His behavior, on the other hand, got a little more challenging but I'm now convinced it was because we were coming up on a full moon. I see those same behaviors every month about a week before the full moon.
I have wanted to take my husband off the galantamine. I said something a year ago and she said no. If we get a new neurologist in Spokane I will probably. I know many do not want to hear this, but I just want it to all end with him. If it is helping I will never know where he really is in this disease if it keeps hiding it.
Hi Charlotte, I'm not sure what you mean by saying you want it to all end with him. If you mean ending the drugs for AD, so you can see what exactly you are dealing with, that's what I did several years ago and it made no difference. Aricept and Namenda did not live up to the advertising hype -- I found them to be really useless All my husband takes now is a low-dose pill for blood pressure and Flomax for enlarged prostate. He has Ativan as needed for anxiety but he rarely needs it.
Of course, my husband never had the behavior issues that we see described on this site. If he was aggressive, screaming, etc., I'm sure I'd be eager for whatever drugs were available. Although frankly, it sounds like a lot of people are drugged to the gills and they are still completely out of control. I guess I have it easy.
I am glad this discussion came up. DH goes to the neurologist Monday. I was going to see about stopping aricept and namenda. He has been on aricept for 7 years and namenda for 6. One doctor told me he would change to where he would be if he had never stated it. He said he would lose ground and never get it back. I don't know. He is declining fast now. The neurologist told me it wasn't doing anything
We went to the neurologist today. She said to start slowly taking DH off aricept. We are increasing his Trazadone. Hopefully he will sleep better at night. Today is our 30th anniversary. Our daughter sent us flowers and I told him why. He just looked at me blankly. Then said you are a good woman. Two minutes later or sooner he had no idea what I said. I will see what happens with stopping the aricept.
Good that she gave you the option. It will be interesting to see. I so want to take hb off the galantamine but the doctor said no. But, one of these days I will.
Happy Anniversary. They are always so mixed because it means nothing to our spouse but means years of life together for us.
elizabeth* 9/2/14 DH never took Aricept--when it was prescribed he just flatly refused--was still alert enough to do that. But later on the neurologist started him on Namenda. He was on that for several years before he was admitted to Hospice May 10 of this year. The Namenda was discontinued with no tapering off, and there was no change in terms of DH. But there had never been any difference, whether he was on it or not. Might as well have been a sugar pill.
elizabeth, Your husband was probably right in refusing it. And of course the Namenda made no difference, whether he took it or not. It probably IS a sugar pill. (I am a grouch and a cynic today.)
I'm glad that you are starting to get your feet under you again, so to speak. And that you are beginning to reclaim your house as well. I don't know about you, but I have always enjoyed the peace and privacy of a nice bedroom.
test groups have only been done for 18 months. The AD drugs allow them to stay cognitively functioning longer - if it works. It helps less than 50% of those who take it. And, you won't know until you take them off it. He thinks it is helping - what do you think? Can you afford it cause for some it is expensive.
So yes, there is a time when it is believed it no longer helps. Whether that is 18 months or 10 years - won't know until you take them off. We use to have a geriatric doctor who answered questions for us. He said when family members want to take someone off the AD drugs, he will do it but keep a close eye on them. If they change meaning loosing cognitive ability, then he puts them back on right away and he has found there is little loss, they will go back to close to where they were.
Aricept has also been shown for some patients to help with agitation. Some are kept on because it helps with that.
MY husband is on galantamine not aricept. He has been on it for over 6 years now. Because he gets it through the VA it only cost us $8 a month which is a lot less than many here are paying for the aricept, galantamine, or namenda. If it cost what many have to pay (can be a couple hundred a month) we would not be able to afford it.
sjrich, my husband took aricept and namenda for just over 5 years. I DO believe that they helped for approx 3-3 1/2 years. He was on a pretty steady plateau for that time. After that he started to slowly decline and now in the past year he has spiraled down dramatically. He is still on the namenda as I am afraid of stopping it due to possible agitation without it. He is pretty manageable for now, but drugs are definitely not holding this disease at bay any longer. ✴I don't remember seeing you here before. If you are new...welcome ✴
Charlotte, thank you for the info. The Drs are giving him the generic for aricept so so far it is affordable. Aunt B, he's been taking it about a year and I'm not sure it's working much anymore, but as long as he thinks so, I guess it's ok.
We are stopping Aricept. He has been on it about 8 years. I am just really wondering if I am imagining a decline, or it is part of the progression. He has been declining for some time now. I don't know if it is the fact that we have been trying to do more around people and in the yard with leaves, or if it is a decline. I think I am just thinking that it is worse. But he is mid to late stage 6, so I know that it does start moving faster. All the symptoms have been coming on for a while of stage 6. Just needed to see what you think. Also mentioned getting guardianship, and his family is not responding well (sisters). Which they have no say so. I think that they think I am going to keep him home forever. They said that I should find a place downstairs for a bed for him. Well, how will he bathe? Where will I sleep? They really think that I am going to be able to keep him home the whole time? They do not help with anything. Well that is another discussion topic I guess.
Jackie, maybe you could start a new discussion, and we could help you with suggestions about how to re-design your downstairs…if it's even possible to do anything about a downstairs bedroom/bath. Let us know. (I don't mean to hijack this thread--as you said--it's another discussion topic.)
I stopped Dan's Exelon patch myself & informed the doctor what I was doing. That was back in the early part of the year. There didn't seem to be any dramatic change in him. He is declining slowly, even more forgetful (if that's possible!), told me the other evening that he forgot how to shave (maybe that's why he chooses not to do it very often). I really felt bad for him, but it was kind of refreshing to me for him to actually admit to something like that.
Anyway, all he takes are his usual meds for cholesterol, diabetes & aspirin. The disease can't be stopped & it's probably pointless to try everything that comes down the pike. For me, it's let nature take it's course. Of course, if a physical medical issue crops up, it will definitely be taken care of.
Elizabeth You are not hijacking my post. All imput to me is great. I really do not want to renovate the house. I plan on placing DH when he gets to the point that he cannot go upstairs. It would be costly because of our floor plan. But I do not know if I am feeling guilty or sad because of his decline. He started decling before stopping the aricept. That is why we decided, the doctor and I, to stop it. I think honestly he is just decling. It really started a year ago. My daughter reninded me of the changes and when they started occurring. He is part of a research. They test him every year. He has done this for 7 years. Last year was a big decline and this year they couldn't even test him. That was prior to stopping the aricept. I guess it is hitting me how fast he is changing now. I really need to visit places for him. Thanks for wanting to help.
We are currently taking a drug holiday, our GP's words. My DW was diagnosed in May of 2012 and since the fall of that year have tried airecept, excelon patch and galantamine none have seemed to make any difference. We have had a steady decline in fact our last visit to the neurologist last summer the comment was declining faster than we would expect and then about stage5/6. Throughout all of the different drugs she had started to develop these sores in the last year or so mainly on her face. Not extremely bad but enough to really bother her. I had asked on many occasions if this could be a side effect and was told doubtful but who knows.
In the last few months we have a number of occasions where for no reason one of these sores will just start to bleed I will look over and blood will just be running down her face. She Was very upset so enough was enough went back to our doctor and again asked. He did a bit of research and said possible then asked what if we stopped the galantamine as don't think it is doing a thing. He said well like take a drug holiday and within a couple of weeks you should know if there is a major difference we can just put her right back on the drug without any real problem. It has been just over a week and no real change except her face is clearing up.
Sounds good. I hope her skin clears up and stays that way. I know my husband gets red spots on his temples or an itch on his ear and will pick at them until they bleed.
I stopped my husband's galantamine the first of the month after 7 years and have seen no difference. Well, he has surprised me when he will remember something but that was happening before. His neurologist doesn't know yet and won't find out until we go back next February.
The problem that I see with making determinations regarding medications is that there's no basis of comparison. My wife has been on 20 mg. of Aricept for almost 6 years and Namenda for 3 years. As the Alzheimers progresses and her dementia worsens I can't know if it would have been worse or faster without the meds. We live in Massachusetts and my wife is followed at the Memory Disorders Clinic at Mass. General Hospital. She is involved in several research programs which we don't expect to benefit her condition, but hopefully will add to the knowledge base of AD. In one of the studies they are using a marker or dye for an MRI which identifies Tau protein in the brain. In another they are doing the same for Amyloid. Next month she will have an MRI studying connections within the brain. I ask every neurologist if they have any empirical evidence that the meds slow the progression and they all say the same thing: all indicators are that it slows the progression but we have no proof. The only side effects which she has endured are leg cramps, both during the day and at night.
Every thing I read says if the work, which is less than 30% of the time, they have not shown to slow it but allows them to stay cognitively functioning while the disease continues on. That is why IF it was helping, when they come off it they will quickly progress to where they were if the drug was not helping. Logical thinking says if the drugs slowed it down, that would not happen.
I agree Gawker - how do they know if it helps? This disease is not predictable (wish it was), so how do they know where the person would have been without it? Cancer is predictable for the most part. Without chemo or radiation (or whatever is the normal treatment) they know approximately what will happen and how soon.
Have you tried magnesium for the leg cramps? That helped my husband.
Charlotte -her doctor said to increase potassium, so she gets a banana or two daily. What food would provide more magnesium? Wolf, thanks for the welcome - I didn't know this existed, despite many visits to a support group and interaction with many medical personnel. I have so many frustrations on a daily basis and " no one else understands!" That I think this might be helpful to interact with so many of you who do understand. I've started perusing the topics and will most likely start a new topic specific to some of my concerns - legal, medical, social, and marital.
Wolf - thank you - I love that you emphasized dark chocolate. She has developed a sweet tooth and loves the dark chocolate M & M's when I can find them. She has 1to 2 servings of yogurt daily; 1 or 2 bananas daily and frequent meals including the other items listed with the exception of dried fruit. So, for now, we'll put up with the leg cramps (easy for me to say). As I wrote this I thought of the fact that I now do 90% of the cooking. While I've always enjoyed cooking it was a special occasion thing. Now it's an every day thing and I struggle with menu planning to make sure we both have a well balanced diet. I'm also moving into HER kitchen. Maybe I'll start a thread on this topic. Clearly there are far more women than men here, but perhaps some other men have experienced the issues of becoming the chief cook and bottle washer as well as taking over another's territory.
I give my husband a magnesium supplement at bedtime. When my kids were growing up the doctor had me give them a spoon of peanut butter to help with the leg cramps they had. My husband use to eat PB and crackers every night because it helped, then he quit eating it and that is when I started the magnesium.
My partner developed a potassium deficiency - he's on 23mg Aricept & Namenda. The deficiency was found via a blood test. He has to take a prescribed potassium tablet - more than what is available over the counter to correct it. So you might want to find out if its a serious deficiency causing the leg cramps. You can buy both magnesium & potassium tablets, they just might not be enough to correct the deficit.