JR has been on Aricept for 18 months, Namenda/Ebixia in Canada for 6 months, he is going downhill very quickly. I cannot really see any real slowing down. He was only showing signs 2 yrs ago and now is firmly in stage 6. I am placing him in care in Feb and would do so sooner if there were a bed. He is just too much weight for me to lift and I can not offer him the care he really needs. Do you turly think the Aricept and or other AD drugs have helped slow the progression of the illness in your loved one? I really do not think it is doing him any good now but am afraid to quit for fear of what will happen. Kathy
I cannot speak for anyone else, obviously. Also, I allow as how my feelings might change when I get to that point...but...I feel like when/(if) I decide my husband needs care beyond that which I can provide, and his quality of life is really questionable, and I have seen a definite decline despite drugs...I will probably stop them.
Kathy, Gord has been on Aricept for the first year....July 2003-2004. Then he started Exelon. I took him off it after a year because I thought it was contributing to his depression. He was off it for a year and our neurologist at the time felt there was a big decline due to that. He went back on and has been on since. He has been in a study for Ebixa since August. We don't know if he is on Ebixa or a placebo as it is a double blind study. In February, he goes on the Ebixa to continue another phase of the study. I am now hoping fervently that he is on the placebo as he is going downhill.
My husband was on Aricept for about 18 months back in 1999....there was never any improvement and he continued to spiral downward. The doctor and I decided to discontinue and I never noticed any quicker decline. This was before Namenda/Ebixa was available so I can't say whether the combination of Aricept and Namenda would have been helpful. I was glad to have one less pill to try to get my husband to take. Many times I had to crawl around the floor looking for the pills he would throw or spit out. Fun times...NOT!Now, eleven years into this the only medication he is on is a pain patch that is changed every three days to help with what we are assuming is pain from the contractions in his limbs and degenerative arthritis he had before diagnosis. Of course, he can't tell me if he hurts or anything else for that matter, so we just fly blind and hope for the best.
Our neurologist explained the Aricept this way: Nothing will stop the disease, but the Aricept is designed to slow its progression.
All I know is that Sid was going downhill fast, and he stabilized as soon as he started on the Aricept (15 months ago). About 4 months later, the doctor added Namenda.
Every AD patient is different, and every patient reacts differently to different drugs. Stopping Aricept is not recemmended, because there can be a fast decline. But as with everything else related to this disease - it's a big question mark. I wouldn't stop any drugs without consulting the neurologist first.
WEll I would certainly agree that they have not added to the life span, and have not really done much to stop the quick progression :( I think I am just bummed out because I really thoght we would have more time to adjust to this new lifestyle
My husband showed some reversal of symptoms when he started Aricept. When Namenda came on the market, he added that. After about 18 months he had to stop the Aricept because of progressively worse muscle cramps and spasms. (I wish the doctor had picked up on the reason for the muscle spasms so he would not have had to suffer from them so long. I eventually read up on every drug he takes, and found the cause myself.) We noticed no decline whatever for months after stopping the Aricept. Fortunately my husband and I were able to discuss when to discontinue the AD meds, as well as other things he is taking. That's a decision I'm glad I don't have to make on my own. As it is, when the time comes, it will be a hard decision to make. Someone described the action of the AD meds to me as keeping them on a plateau longer, with a swifter decline at the end of the effective period, rather than a steadier decline throughout the whole time. I think we're moving into that swifter decline now--but not yet to the point where I will discontinue the AD meds.
My husband was also taking Aricept in the beginning and the nightmares he experienced were very scary to me. About 1 month after he got on Aricept, Namenda came out and we put him on the combination, but, the nightmares continued. Then the decision was made to only put him on Namenda and that worked out great for awhile. At least he did not have those nightmares anymore.
He is now on Namenda/Exelon combination. I do not know if any of this helps any longer. He is also showing a swifter decline, this started in May of this year. I ended up having to place him in a NH as he needed 24/7 care with every function of his life. He cannot walk, is incontinent, eats pureed foods and doesn't talk much anymore. I still have him on the AD Meds, but, beginning of the New Year we are going to evaluate and see if we should discontinue. I really do not know anymore what to do. Sometimes I think the doctors are like we are with this disease, they are not really sure what to do either. I am not going to make any decisions right now, I am going to wait about 3 more mos. or so and then see where we are at with this.
My husband and I also discussed what to do if the other person could no longer make any decisions and we decided that we would both just do the best we could for each other. When the time comes to stop the Meds, then that decision will be mine, and I will again do the best I can for my husband. This journey is a tough one.
This disease is one huge puzzle. Everyone seems to react differently to the various drugs available, some people seem to go downhill fast with or without meds and others show a slow decline. Five years ago my husband was diagnosed and put on Aricept. He had no adverse reaction but the doctor felt Reminyl was a better drug so he changed to that after just a month or two. As soon as Ebixa became available he added that. He never had any adverse reactions to any of these drugs, no nightmares, no sundowning and thankfully the decline has been quite slow. He took part in the Alzhemed study and remained pretty stable. This study apparently did not show the results expected and it was terminated in November 2007. I think my husband has deteriorated somewhat since then but is still managing reasonably well. I wonder if the age of onset has an effect on the apparent rapid decline some of the spouses here are experiencing. Sadly, in the end we will all be faced with the same tough decisions.
Hi kay kay, The dreams are the reason that Gord went off the Aricept after a year. He would get up in the morning and sit with his head in his hands and cry about his terrible dreams and how he was afraid that he was going out of his mind. He then went on Reminyl and lasted about 3 days due to awful agitation and anxiety. He has been on Exelon since with the exception of one year.
Inge I have been told but no proof given that the younger it strikes you the more rapidly it progresses.My wife was diagnosed 2 years ago this month and started on Aricept and 1 year later added Namenda. In the 2 years that have passed she has gone from stage 2 to early stage 6. Her diagnosis was at age 40 but signs started somewhere around age 38. So.... in approx 5 years 2 on medication she has had a progressional decline. I am curious how others time frames have progressed. If these drugs slowed it down I couldn't tell. With what AD has done to my wife and family and knowing this progression will continue its hard to keep the faith but I have to. Best wishes to everyone in 08.
I knew someone a few years ago whose wife was diagnosed at age 40. At that time, her doctor, as Tony said, did say that when it is comes on at a young age, it progresses very rapidly. I have no idea why.
Aside from such early onset, everyone progresses at different rates.
Joang, I always heard the same thing about EOAD....and it was true with my husband up until he got to the end stage and we have been here for over four years now.
Tony, he was diagnosed at age 50 in 1997....and the end stage started in October of 2003. He has now been unable to walk, feed himself, or even move on his own for over four years.
I just read a lengthy article in the current U of T Magaine on research into Alzheimer's. Much of it is too technical for me but what really hit me was this statement "she takes Aricept and Ebixa- drugs that temporarily reduce the telltale signs of A.. but don't halt or slow its progression." I find this confusing and ambiguous. It also says poor balance is an early indicator of A. What was really disturbing is that they think a cure is still at least a decade away. I guess we can only take comfort in the fact that our children might be spared from suffering this devastating disease.
Inge--that statement about Aricept which you find confusing and ambiguous--that it temporarily reduces the signs without halting or slowing its progress... Well, it is confusing and ambiguous, but that is my understanding of how the drugs "work."
It is a conundrum. I summarize it like this: The med may or may not reduce your LO's symptoms, but you won't know because you have no way of knowing how bad your LO's symptoms might be without it. The med will, sooner or later, lose its effect, but you won't know when that is because you have no way of knowing how your LO would be doing without it anyway. Aargh.
Emily, I always enjoy your posts.....you have such a wonderful way with words. Your description of the benefits of Aricept and Namenda is perfect. DickS
Below is a Sept 22 report of a study here is an excerpt "John Growdon, MD, director of the MGH Memory Disorders Unit, professor of Neurology at HMS, and senior author of the paper, explains, "The results of this study should change the way we treat patients with Alzheimer's disease. Cholinesterase inhibitors are approved for use in mild to moderate dementia, while memantine has been approved for advanced dementia. But it looks like there is an advantage in prescribing both drugs as initial treatment."
My DH started this combination when his brother's doctor, at Baylor University, recommended my SIL tell anybody who had been tested and had the PSN2 EOAD gene start immediately on this combination. So my DH started while he was still in stage 2. From their family history, we can attest that this combination has significantly slowed the decline and symptoms of AD.
Adding to my post above, I have to agree that with Emily's post above that at a certain point, when the quality of life is very questionable, it may make sense to no longer medicate.
However, for those in the very early stages, I think it is important not to delay.
My husbands neurologist also started him on both drugs when he was in around stage 3. His neurologist was involved with the above research. D has familial EOAD. His mom the brother both died at 52. D was diagnosed at 51 and is now 53. It was going v fast and with the two drugs he improved drastically and held his own for almost 2 yrs. Unfortunately it looks like they are no longer working too well and he has had a drastic drop in the last couple of months. I would say he's at around stage 5 with some 6 right now.
My husband is older than most of yours, (72) but he is also about ... Solid stage 5, some 6. Lately he's been so unsettled, wanting to go "home." Or saying he's been cooped up all day and needs to get out when clearly we just came back from 2 hours out in town. He was started with Namenda at diagnosis (3 years ago) and Aricept wasn't added until about a year later. He has been on the combination now for about 2 years. In that time he did well, then about one year ago he took an abrupt decline. Since then we've had to add Trazadone for sleep, and Risperdal for agitation. Namenda is his most expensive drug with Aricept coming in second. At this point I wonder if either aricept and namenda help him at all and if I should just stop one or the other. I know not to stop them abruptly, and that his neurologist should be consulted. I am just hearing from so many people that at this point neither of these two drugs have any real value in the disease. I just feel like we are putting money down the toilet. I have heard most recently from a couple others about suspecting that Namenda might be the culprit in hallucinations, delusions, and agitation. I have considered experimenting myself, by reducing his Namenda 10 mg from twice a day to just once a day.
Bob (age 76 now) was DXed 2 1/2 yrs ago. He was started on aricept. I told his EX-neuro I had heard it was only of use for about a year. He adamantly told me that was nonsense. 6 months later he added namenda (gradually). Oct 07 he added exelon gradually. He said to hold onto the aricept in case Bob couldn't handle the exelon-nausea problems. Bob did ok until about Jan 08, when he slowly lost his appetite and refused to eat, Side effect of both namenda & exelon is loss of appetite. I told EX about loss of appetite and now nausea and he put him on exelon patch. His nausea went away, but still wouldn't eat. Testing in June showed severe dementia. No stage has ever been mentioned. EX-neuro said NH. After rather long PCP visit, Hospice called in. Bob not taking any meds at all (my decision). PCP, who heads up his hospice group is watching BP in case he needs to reinstate. So far bp has been very good. Maybe the meds would helped him had he been Dxed earlier. We will never know. I don't believe they helped at all. we will never know for sure. In this case----------
It used to be that Aricept was started immediately upon diagnosis, and Namenda was added at a later stage. The current standard practice at our neurology clinic - Premiere Research Institute of Palm Beach, Florida - is that BOTH drugs are usually prescribed right from the beginning, and they never give Namenda alone.
I can say that when Sid was diagnosed and put on Aricept, he definitely stabilized. Namenda was added a few months later. I have no idea if that did any good. He stayed fairly stable with some slow decline intermittently for about 18 -20 months, and then more noticeable decline. Since the first BAP III infusion, we noticed improvement in alertness and memory for names.
after you've posted you can still edit. You'll notice on your posted comment, (and only if you are signed on) to the right side across from your name, the word "edit." It appears in small case, faint print, and underlined. You will only see it on YOUR OWN posts indicating you can only edit your posts. click on it and it'll bring up your comment box for editing. Then instead of it saying "add your comments" below the box it will say "save changes."
Another thing that I just learned is that I can use the spell check in my google tool bar to correct spelling in my comment box before posting. I used to think the comment box had to have its own tool bar in order to spellcheck. On google tool bar I click the ABC Check. It highlights my comment field and any words to check. Then I right click and click on "stop spellcheck." Then post my comments.
(the alzheimers assoc. message boards don't allow spellcheck.)
New Realm - When my DH started on Namenda and Aricept at the same time, his dosage was half of what it is now, so if you are thinking of discontinuing one of them, you might want to cut the namenda in half both times a day. My Neuro at WVU (who was of the opinion no meds because no cure just comfort) said if I discontinued either to do so over 2 weeks.
I personally, am of the opinion, like some of you, is quality of life. When my DH gets to the stage of NO quality of life OR I get to the stage of NO quality of life I don't believe in prolonging the suffering and I think they are suffering. I will discuss things with our children, since they are helping me with monitoring his care. Stepchildren would be an issue in some of your decisions but do not apply to us. I am pretty sure both our PCP (who has been our Dr. forever, ) and his other Neuro would agree with me. I have already told our children if he has pneumonia or something else that puts him in the hospital I am of the opinion he would not come out of the hospital as good as he is now and I plan to put NDR on his papers when he degresses to zero quality of life. Right now we are enjoying a month of improvement which may be a change in a couple meds or just going to happen
Of course, I am not there yet, so things can change. I consider zero quality of life when you can't feed yourself, incontinence, can't walk, no interest in family, surroundings or self. Completely dependent of someone else for everything and no hope for improvement.
I also don't know what to think about the benefits of the medications. Earlier and on a different topic (Medications?) I commented that for some reason DH had decided not to take his meds.. (Aricept/Effexor/BP/vitamin)..that was last week I believe. So for an entire week, he refused or simply ignored them. THEN..this Friday and yesterday.. he took them but today he has not.
I think it would take another week or so to really KNOW what the real outcome of not taking Aricept might be. From earlier experience when he decided not to take the Zoloft I suspect the impact of not taking the Effexor will be easier to observe.
These are NOT medications that should be taken randomly. I'm going to have to try to see if he will agree to take them every day (again) and if not, its probably not a good idea to have them around. My DIL reported that on a day I was away, she saw him take one day's pills and in about 30 minutes, he took another day's supply .. Again, she noticed no ill effects.. Kinda scary for sure. This let me know that he's progressed past the 'fixed routine' he's managed so well for 4 years.
LeeLyle - On my computer, I click on EDIT and scroll down to Spelling and Grammer, Click on Spelling and the mis-spelled words will come up. I tried highlighting the whole section and that didn't work on mine. I just highlighted the word. And she told you about using the "edit" on the right of this page to make a change after you have posted.
DH is using the Exelon patch. (9.5). He also takes 10 mg twice a day of Nemanda. Toward the top of this thread I read about an Exelon/Nemanda combination. Is that a single drug? Or is the same thing DH is using?
These drugs are really expensive and I was wondering if there are any generic meds out yet. Is the Exelon pill cheaper than the patch? Is Aricept cheaper than Nemanda? And is one drug realy better than the next or is all just "try and see."
Am still a newcomer, so am questioning why the first messages were dated in December 2007 and being commented on a few minutes ago. I had to take my husband off Aricept as he couldn't tolerate the dizziness, and then he took another (forget already...began with G) but after beginning Namenda could not tolerate any combinations. (He has PPA, not Alzheimers, so no MD knows what to do with him!! just experimenting, as with Alzheimers. I felt Namenda slowed down the progression of Alzheimer-type symptoms but not the Primary Aphasia. I am keeping him on Namenda for lack of anything else to do, but will wean him off soon. It is always so strange not getting his advice with meds (was a physician & his lack of interest in his treatment is stranger.)
Mawsy, Thats what Bob was taking, but he is in higher stage than your DH and thats why I stopped meds. No don't think its a combo drug. I belive a drug has to be in use 10 years before it can be produced as a generic. Exelon too new for that and I think namenda. Don't know how long aricept has been on market, but probably not long enough. I think these meds are like "different strokes for different folks". Pill cheaper than patch?? Don't know. If it is, it isn't much.
lmohr, Must have different programming or whatever on my pc. When I click on edit, there is no scroll bar to scroll down with and I don't see spelling and grammar. What part of W.VA? My Mom was from just north of Beckley..
Marcia, Joang started this site in Sept 07. If you go back to the 1st topics, you will find here initial greetings, etc. You can go back, click on a thread of page 35 or so, read the postings, and add your comments. This will bring the topic up to the first one on your and everyone elses screen . That what someone has done and therefore you see the earlier postings.. Welcome to the site. I hope some of the comments will help you in some way even though your loved one has a different disease.
Also, if the price of cholinesterase inhibitors (aricept, exelon, razadyne, etc) is killing you, you might consider (sigh, here she goes again) switching to huperzine A. This is sold over-the-counter as an herbal supplement, but it is a cholinesterase inhibitor widely used in China, where it is reportedly more effective and has fewer side effects. It costs about $5-10 per month.
Phase II clinical trials in the U.S. to confirm efficacy and safety, and to establish the optimum dosage, are wrapping up. Preliminary results from the first 6 months of the trial, which were double-blind placebo, were recently released:
"The Phase II clinical trial compared the safety, tolerability and efficacy of either 200 or 400 micrograms of Huperzine A on cognitive function, activities of daily living and behavior. Results showed that there was no statistical difference in the mean change AD Assessment Scale-Cognitive (ADAS-Cog) scores, the primary endpoint, after 16 weeks treatment with Huperzine A 200 micrograms bid (twice a day) compared to placebo (p=0.81).
"However, data demonstrated that the higher dose tested, 400 micrograms bid, showed cognitive enhancement on the ADAS-Cog versus placebo. The maximum cognitive improvement was observed at week 11 of treatment (p=0.001). Over 16 weeks Huperzine A (400 micrograms bid) improved cognition compared to placebo (p=0.03) and there was a trend to cognitive improvement over placebo at week 16 (p=0.069).
"...On other secondary endpoints, including clinical global impression of change (ADCS-CGIC) and the Neuropsychiatric Inventory (NPI) there was no statistical difference between placebo and either 200 or 400 micrograms bid after four months treatment. However, there was a trend to improvement on activities of daily living (ADCS-ADL) with 400 micrograms bid (p=0.077).
"Huperzine A was safe and well tolerated. Overall the incidence of adverse events during the study was similar between both doses of Huperzine A and placebo."
Note that these results were for the six-month double-blind part of the trial. Participants were invited to participate in the open-label part of the trial. This was originally planned to last for six months, but was extended two more times, for six months each time. 82% of participants accepted the invitation for the first year ... haven't seen any data on how many went the full two years yet. (The final six months is either still going on or was just completed.) Haven't seen any data from the open-label part of the trial yet.
I hope they will look at data from patients who were also taking namenda separately from those who were not. My husband was on the low dose of huperzine A, is also on namenda, and his symptoms have held steady for over two years on both. (We not only went the full two years of the trial, but I'm also buying the huperzine A OTC for him now.) Naturally, we don't know whether he was placebo or not during the first six months, but I suspect he got the low dose of the drug. He experienced mild nausea until I finally had the sense to give it to him with meals. There have been reports that a combination of namenda and a cholinesterase inhibitor may be more effective than either drug alone; possibly, my husband did well on the lower huperzine A dose because of the namenda.
Also, I tripped across a paper on biological activity of huperzine A, which says that many animal studies show that it has several novel neuroprotective effects in addition to cholinesterase inhibition. These include regulating beta-amyloid precursor protein metabolism, and protecting against beta-amyloid-mediated oxidative stress and apoptosis (cell death).
Mawsy, I have insurance that has covered all his meds (with a co-pay). If I had price concerns and Bob was still on AD meds or even in earlier stage and he was taking AD meds, I would certainly try the huperzine A. Preventing cell death is a hugh plus in treatment of AD. (I think) Thank you Sunshyne, I couldn't remember (sound familiar) which thread I read your input on and being extremely lazy, I didn't search for it..
Sunshyne -----WOW----What does all that mean in 25 words or less. That is about all I can understand. Do you think the huperzine A would be a substitute for Airecept? Just your personal opinion, not fact.
Sorry, lmohr, I'm too used to the tech talk to see how confusing it might be to most people. My personal opinion, yes, it would be a substitute for aricept, especially if your ADLO has any adverse side effects from the aricept. Preliminary data are confirming what the Chinese have reported.
The clinical trial people here were tickled pink with how well my husband did. I wanted to get him in the bapineuzumab trial, but so far, they won't accept anyone on an experimental drug, even though they are accepting people on other cholinesterase inhibitors. And they said my husband is doing so well on huperzine A, they would strongly recommend that I keep him on that rather than go off it to get into the bapineuzumab trial.
As posted some time ago, I took my wife off both Aricept and Namenda about 7 weeks ago and kept her off of them for a month. Just continued on the Wellbutrin for depression. She became much more pleasant and less combative but she started having accidents at night time. Once it became obvious that was going to be the norm, I started her back on the aricept first, ramping up over 2 weeks. She's been on 1/4 dose of Namenda for a week now and will boost it up to 1/2 next week. Should be back at full dosages in 2 more weeks. She's back to being uncooperative and mad all the time but her accidents have all but disappeared. I think I'll stay the course with the meds until the next development. Thenneck
G has been off Namenda for two weeks, and felt there was a huge improvement in confusion and general ability, BUT in the last three days Mr.Nasty has returned! I can't deal with this again. Has anyone had these symptoms return after being off this med? I dont know if that is the cause, but he hasn't been like this for quite a while, but he is right there now...maybe just a general behavioral thing? I don't know, but it is so upsetting. Mrs.Nasty returned right along with him. I know it is not profitable to get so angry with him, but he is really awful...and of course it is MY fault, absolutely nothing to do with him. Why did I think it would just go away?