My husband never took any medication for alz. He said he did not want anything to prolong any part of the process. So that is what we did. He was diagnosed in 2005 and passed in 2007.
We've changed GPs, and I told him I'd like an evaluation to see if we can take hb off dementia drugs. He said to wait until we have a new MRI and eval by a new neurologist. New neuro appt is 9/13. I hope to stop the Namenda & Exelon 9.5 patch because I don't think they're doing anything (hb has vas dem), and are quite costly since he's in the donut hole. Hb has been fading rapidly of late and is aware he is. Will post the verdict.
I almost wish we didn't. I almost wish we could speed it up and get it done. Thing is, if what they say is true--that the meds won't change the timeline, they'll only potentially keep him operating at a slightly higher level at each point on the graph until the decline-to-endpoint--then it's hard for me to unilaterally say "no meds for you." Because I guess declining meds would NOT necessarily speed things up.
My DH has not been on any of the "dementia" meds, but is on several psych meds to address behavioral issues and several for related issues--tremor, pain,etc. He has Vascular Dementia. Some years ago (before Dx) h made a complaint to his Psychiatrist about memory issues. The Dr. gve hi a 3 month intro pack of Aricept with instructionsto tryit. "If it works, you have Alzheimers", he said. All it did was aggravate his aggitation. We have opted to stop meds---lovastatin and Plavix as he was onm the first over 20 years and his cholesterol is only 159 total now, and he was experiencing on going vascular damage (TIAs) while on it. Plavix is supposed to protect the vascular system from breaking down.
Thank you so much for your responses. My spouse & I have decided that he will not take dementia meds. We've received flack about our decision from a few friends and family members. (The ads on TV for these drugs make people think there's a miracle cure.) It's nice to know we are not alone in our decision.
BLN, my HD has been on Aricept & Namenda for about 3 years. How can you tell if these meds work? I guess the only question is, would he be further along in stages if he wouldn't have taken the meds? Who knows. He never had a bad reaction to the meds so I kept him on them. He refuses to go back to the neurologist so our GP prescribes the meds. You are right about how people perceive the meds. I don't know how many times I've had to tell someone the reality of the meds.
My wife was on Razadyne (she vomited from Aricept) and Namenda for 3-4 years. Then the Razadyne was stopped and she was put on Exelon Patch. These have now been stopped and she is on no meds for AD. I did not see any change when we took her off. Now, all she is on is metformin for diabetes, hyzaar for high blood pressure, omeprazole for gastrice reflux, and immodium for loose bowels.
At first it seemed like Namenda worked, but about 8 mos. later the decline was becoming so rapid I discontinued it. Aricept was dropped at the start due to bad reaction (diarreah). He remains on Seroquel and an anti-depressant has recently been added. An emergency supply of Xanax is in my possession, but have only had to use it once. He continues to decline.
The reports filed for clinical trials for every medication that is approved for the treatment of AD patients all state that those medications have no affect on the underlying disease. They simply allow the patient to function a bit higher for a short period of time. Most of them do not prove to be of any benefit past two years of use. If your loved one is already at the stage where communication is rudimentary and most useful skills like toileting and feeding one's self are history (as is the case for my wife) then aricept, namenda, exelon and the others are little more than grasped straws. In fact, all medications are chemicals that circulate in our bodies and affect, in some way, every living cell. Once a med is not providing the benefit for which it was prescribed it could very well be making things worse... if not the AD then something else. My wife's PCP and her Neurologist agree with this assessment and work closely with us to make sure that my wife is not taking anything that she doesn't absolutely have to. It was my wife's wish that her life not be prolonged at any point for any reason. She specifically told me that even if she contracted something like the flu she wanted no treatment. Her desire was to leave this world as soon as possible when she reached the later stages of AD.
Claude was on Exelon (bad reaction from Aricept) and Namenda for 3-4 years. We tried the Exelon patch when it came out, but for some reason, it wouldn't stay on his skin, so went back to the pill.
He was falling frequently so his PCP ordered home health services which included PT and OT. The therapy helped his balance tremendously so he wasn't falling as much. We didn't realize how fast he was declining (I guess it was the amnesia divvi talked about in another post). The Home Health RN contacted his doctor and he ordered Hospice.
The Hospice doctor immediately took him off all meds except for BP, Parkinson's and Coumadin. As soon as the Alz meds cleared his system, we could see how rapidly he had declined in just a few days.
I think the Exelon and Namenda helped him stay functional for several years and even tho he had reached Stage 7, was still helping somewhat.
But line Elaine said, who knows. Every Alz patient is different.
We also did the PT and kept him on the Aricept and Namenda to the end. I also think the PT helped him stay walking longer and he enjoyed the attention the therapist gave him. A couple of times I didn't give him one or the other or both for a day or two and he immediately started staggering around and couldn't keep his balance. Had he not declined I would have stopped them. My dh had Parkenism with both AD and VD. The last year also developed "head drop". I also took him to a Chiropractor a couple of times a month, late in the disease. My dh skipped stage 7 of the disease. We were fortunate.
My DH is not taking the meds prescribed for his MCI. The neurologist prescribed Lexapro (for anxiety) and gave him the choice of Exelon patch or Razadyne pill (for MCI).
My DH has always been a nervous Nelly. We decided that if we have never treated his anxiety before, there was no reason to do so now. Plus there is that nasty possible side effect of suicide. I told my DH I would rather he were anxious than dead.
I researched and found that Razadyne was not supposed to be prescribed for MCI (a clinical trial ended in deaths). And as Thunder said, all the AD drugs only help symptoms for a year or two, if at all – the disease marches on unabated. I have also read many anecdotes of doctors telling people not to stop AD drugs, or their loved one may fall of a cliff, cognitively. We just decided – no thanks.
It’s a personal decision. Your friends and family should understand. If they are still concerned tell them they should research it more thoroughly. I don’t think the drugs alter the duration of the disease either way, if that is their concern.
P.S. If serious behavioral problems develop, you will see me first in line at the pharmacy, for the meds that control that :)
My husband is on Aricept and Lexapro. He didn't tolerate Nameda very well. I'm not sure what stage he is in. I have to help him dress, find the various rooms in the house. A few times recently he has put his shoes on but didn't fasten the velcro. We are very lucky with our insurance so I think I'll stick with the Aricept, just in case.
My Dh is on exelon and seroquel. Wouldn't want to go back to the bad old days without these drugs. They have given him a thread back to reality ( at least HIS reality) and keeps him from the 14 hour days of severe preseveration. He was so tortured before these meds it was just awful to watch.
BLN.. we discontinued all my dw's meds last month, and have not noticed a lot of changes. She was on Namenda and risperadone, along with xanax and hydrocodone for pain. She does get agitated at times, but her short term memory is so poor that she forgets as quickly as it happens. She can no longer get dressed, and has so much difficulty just putting on a cardigan sweater. She has severe difficulties with bathing, but my daughter handles that well. I expected that stopping the medications would have an obvious effect, but so far, I cannot say that there is much difference.
My husband has been on Aricept since his diagnosis of Alzheimer's in Jan. 2007. We were told at that time by the geriatrist that studies showed Aricept would slow down the symptoms for 3 years, but that after that time, the decline would be as rapid as if he had never taken it. So I took him to our GP when the 3 years was up, and he said that since my husband tolerated the medication well, and if we could afford it, we should leave him on it. My husband's decline has been marked this past 6 months, as the geriatrist had predicted. There is some comfort that I know it's not due to withholding the drug. Also, there is always the threat of his kids vowing to take away my health care representation status. I was grateful to be able to put this decision in the hand's of the GP. It helps with posterior insulation.
My DH has been on Aricept since his diagnosis in March of 2006. Namenda was added a while later (maybe 6 months, can't remember exactly). I recently heard about the 3 yr. window, however since he has no adverse reactions to either medication I will probably keep him on them also. He refuses to go back to the neurologist (I'm not going back there, she asks me the same stupid questions all the time & sometimes she asks me personal questions about my family) so for now it's the best I can do.
I reacll someone, probably Sunshyne on this forum or another, that the reason they say that Aricept is effective for two years is that was the length of the study. They have no studies to prove one way or the other whether or not it is effective for a longer time. It probably is, but they can't prove it and so can't claim it. My husband has been on Aricept for 10 years and his doctor wants him to continue. Last year the cost was $4.60 per pill--last month's refill was $7.24 per pill. They are trying to make their fortune before the generic arrives.
Lori-when my husband was receiving his meds from the VA it was donepezil. Some how it seems our government was getting the generic years ago. Have you considered a reputable Canadian pharmacy.
My hb is 72 and was diagnosed mci in Jan. of this year. Started on aricept right away. He is so much more easy going and I enjoy the "mellow" man vs the "monster" man before meds. Aricept is giving me time to adjust and accept and deal with all the stress that comes with this diagnosis. The destination is the same,but meds are helping take a few bumps out of the road!
Lori... Aricept has been on ongoing clinical trials since before it was available to the public, if there were any data to support long-term use Pfizer would be all over it. You also have to understand how clinical trials are run and how the results are interpreted. The term Statistically Significant does not mean a large, visible, demonstrable difference. It means that for a specific parameter any change (even one so small you need math to determine the difference from the control group) is in fact due to the experimental variable (in this case the Aricept) and not due to pure chance.
There are many legitimate reasons to continue medicating our loved ones. For some patients there truly is a noticeable and beneficial effect. Years ago my wife was in the "Take me HOME" phase. She would get so upset if I tried to convince her that she was already home that she sometimes accused me of holding her captive. She would pack a random assortment of clothes into a canvas bag and be waiting for me when I came home from work. The instant I walked in the house she would beg me to take her home, sometimes she would be standing in the driveway and I couldn't even get out of the car before it would start. I discussed this with her doctor (psychiatrist she was seeing at the time) hand he recommended Abilify in combination with the Effexor she was already taking. In the beginning the difference was miraculous, the frantic requests to be taken home subsided and her overall demeanor improved. Over the next two years her AD seemed to progress pretty fast and she eventually got to a point where she could not negotiate the stairs in our house or get in and out of the car. She slept virtually all of the time and her interaction with us had become minimal. But she was not afraid as she had been pre-Abilify and I was grateful for that... it broke my heart to se her scared.
I began to get frustrated with the Abilify because, due to my wife's inability to take pills at this point, she was taking it in liquid form and often choked on it. I reduced the dose by half for a week and then stopped it altogether. Over the next two months she regained much of her balance and she became very much more engaged in her surroundings. It was like getting a year of her back. The Abilify had been acting like a tranquilizer and it actually made her AD symptoms worse. Gratefully, the frantic episodes did not return and she seems quite content most of the time. She can not speak except in one or two word reflex responses but she can go up and down the stairs again and is content to follow me around a store (holding my hand of course). We have also resumed to our Friday night dinner our routine that had slipped into the past due to her condition.
It is always a good idea to question the meds our loved ones are on. Even the best of them have negative side effects and can be dangerous for normal people... our loved ones have a degenerative brain disease... the affects of any medication on them can be and is often magnified.
Many of the symptoms and behaviors that we medicate or loved ones for are typical of this disease and come and go on a schedule of sorts. Some behaviors like my wife's begging to go home may be present early on and subside in later stages. While it is possible to alleviate their anxiety with meds the continued use of these meds can mask the progression of the disease. In some respects this is a good thing but in others, like my wife's experience, it can also be a hinderance. My wife had naturally progressed beyond the need for the Abilify but there was no way for us to know that while she was still on it. A very annoying paradox when we are simply doing the best that we can for the ones that we love the most.
Thank you all for your responses. I'm sorry I am not always able to respond here, but I do read and take it all in. Very helpful information!
My spouse is just entering Stage 5. His quality of life is still very good. His mood is excellent. He's physically active. We don't want to rock the boat with meds.
Edited to say also: I do understand that the sooner Aricept is started, the better. However, we're still wary of potential side effects messing with his relatively happy existance.
My DH was dx this past Feb. Was started on Namenda in March. The doctor wanted to add Aricept in July. I did not do it. I told him that my DH was doing well, his moods were great and his quality of life was very good. I also did not want to rock the boat. (Before the dx my DH was a bear to live with!). Did I do the right thing? It seems right for us at the time and my DH was ok with not adding anything else. We go back next Jan. We will see then. But my DH has never been an easy man to live with. But right now he is happy, some what healthy and easy to deal with, why would I change any of that.
Blue, don't rock the boat.....you don't have to do everything that a doctor requests....you are the one who lives with this day after day.....If and when the "mood" changes, you can add or subtract meds.
BLN- DH was dx'd in 2008 and was put on Aricept and Namenda. Psychiatrist took him off of both drugs due to symptoms of a drug reaction (didn't have one) in late 2009. He is still not on them and I think he's stage 5-6, but still very functional. His psychiatrist doesn't believe in either Aricept or Namenda and chooses not to prescribe them unless I want him to. I've decided to leave well enough alone.
LFL - you doctor sounds a lot like my hb's neuro. I do not think she really believes any of them work. She is willing to prescribe if we want to see if they will but otherwise does not push them. If I find something on the web that might work she says to try it - it can't hurt anything. He is on galantamine but only 16 mg.
There is a bottom line for all meds for AD, at least with respect to meds given to slow the decline in memory ... meds for for emotional issues such as ranting/delusions/hallucinations may be another story. But for memory loss, at best the research indicates that some meds may help slow down the rate of decline for 6 months to a year for about 50% of the people who take them. Believe me, if any med REALLY worked beyond that, then the ads for that med would surely proclaim that this is a drug that stops the decline! And ... that med would be given to everyone diagnosed with AD. But no such med exists today. There is NO med on the market that can make that claim because no med on the market can stop the inevitable decline of those diagnosed with AD. Yet, many of us want to think that for our spouses the results will be different. Many of us want to believe that, were it not for this or that med, the actual decline or rate of decline might be even worse.
It's called hope; I have it. So do many others. But hope must be tempered with reason. IF lucky enough to have a medical plan that allows you to purchase meds for very little money ...and your spouse has no negative reactions to any of the meds ... and you and/or your spouse want to believe that the meds may be helping ... then it really doesn't matter what ANY doctor says. Take the meds. BUT if the cost of the meds is financially prohibitive and/or your spouse has a negative reaction to the meds ... then taking meds may not be in order and no one should feel guilty about not purchasing meds for their spouse.
I can't begin to tell you all how much better I feel after having read your comments. I truly did think we were alone with our decision. (Acvann: AMEN!)
Before he was even dx and when I suspected that he had dementia I started researching eveything on the internet and I was pretty sure that I didn't want him on any medication either and then he got dx and we had a talk with the dr. and the dr. said that unless my DH was having any trouble dealing with the dementia then he didn't want to put him on any medication for it. That's when I knew he had a good dr. because not only was he not in a hurry to medicate him but he suggested an herb. That is usually unheard of from a dr. Anyway, I feel really good about the decision to not medicate even though it will progress at it's own speed. This disease will do what it does either way. By the way, the herb he suggested was Milk Thisle in case anyone was curious.
His dr. said that milk thistle helps to disperse the plaque in the brain. I don't know as if that is really helping that much but the thing that impressed me about it was that the dr. even recommended it in the first place. Dr's. usually think herbs are bogas(sp) Even if there is a slim possiblity that it is doing what he says I am willing to try it. It is not a cure, there is not a cure. Vitamin B is great for a lot of things so I would'nt be surprised if it helps. It is kind of like what my dad always said, "If you treat a cold sore it will last a week and if you don't treat a cold sore it will last 7 days" Sorry, weird sense of humor my dad has. We know that dementia so far is fatal and that herbs and vitamins are no miracle cure but that doesn't mean that they don't have some value.
I read a small study in S. Korea I think where they used high doses of tumeric so I am giving that to hb. Neuro said it can't hurt anything so go for it. Maybe I will look into the Milk Thistle. My sister has it in her tonic from the naturopath. It is known for its ability to detox the liver. My dil took it to increase milk production.
It comes from the Mediterranean area and since they appear to have lower incidence of AD, maybe they are adding it to their diet. The Milk Thistle is believed to detox the liver which logic would say, if it is true the eat it over there, toxins from the liver move to the brain causing AD. It is at thought and as hb's neuro says - it can't hurt. It is known to protect the liver from damage from drugs including some AD drugs.
Today when I was doing up pills for the next week we got on the topic of to take meds or not. I explained that we never know if they are working or not and won't unless you go off them. He said, 'then lets go off them'. He only takes one RX which is galantamine 16 mg, the rest are vitamins, minerals, herbs,etc. He really wants to know if they are helping. I explained that the drug does not slow it down or stop it, it just allows the person to function better for longer but the disease is still doing whatever it does to the brain. He again said he wanted to stop and see if it was helping. I told him if we were back at my sister's I might, but as long as we are traveling I am not going to take the chance it is helping and he slides down when he goes off cause there is no guarantee if he went back on he would go back to where he was. I too would like to know if it is helping but the timing is wrong right now. He knows the galantamine is what is causing the extra acid problems which reminds him too much of when he had GERDS. I have gone back to giving him the antacid again.
"Aluminum-containing antacids should not be used by elderly persons with bone problems or with Alzheimer's disease. The aluminum may cause their condition to get worse."
DW has been off Namenda for over 4 months. I can not tell that it did anything. She has been on Aricept for over 2 years and it did help, I do not know if it is still working. I have heard it only works for 2 years.
DH has also been off Namenda for about 4 months. This was after I realized that the plateaus were a thing of the past, that now it was a constant downward slide and that Namenda wasn't helping anymore.
Does Seroquel also follow this, that it will stop working after a period of time? If so, how long is that period of time? I'm not talking about periodic med adjustments.
Talking about tumeric: I have an East Indian nurse friend who suggested I try tumeric for my sinuses, about 1/4 tsp per day ( I sprinkle it on my food at each meal). It works! Charlotte, I know you have problems with your sinuses; maybe this would help.
Hanging On - any medication can loose its effectiveness after a certain time. Even adjusting the amount may not help. So the answer is 'yes' after a time Seroquel could cease to help. Only by talking with the doctor of what you see 'not' happening and trying something else will you know.
This is slightly off-topic for AD drugs, but one problem I had with DW was messy bowels. I finally put her on a regular dose of Immodium, which helped, but did not cure the problem. At her last visit to her PCP her dose of Metformin (for diabetes) was cut in half (we are not really checking the diabetes and her doctor wanted to reduce some of the meds). Since reducing the metformin I have stopped the Immodium since she went 3 days with no BM. She is now having regular BM's daily with no messes (YET!!!)as long as I put her on the toilet every 2 hours, and regularly after meals.
We stopped the AD drugs about a year ago as my DH entered the final stages of alzheimer's. The Aricept only helps for a few years at most. Now he is on a variety of meds to keep him as comfortable as possible. He takes the anti seizure medication Depakote and the anti psychotic, Geodon. I haven't seen a reason to discontinue his antidepressant either. Hospice supplies everything except the geodon. One night we accidently forgot to give him his geodon and he was up all night and became very agitated and psychotic (screaming someone was trying to kill him, etc). Made me realize how fortunate we are to have some meds that help us get through this nightmare.
Thanks to all of you for writing you opinions, and experiences, inre meds. Your timing is perfect as I am seriously considering discontinuing Altz meds at this time. Have an appt with GP this week for will give me some advice, but, your advice is great also.
Thanks, Charlotte, for the info on seroquel and losing it's effectiveness. So far dh is doing ok on it. He had an episode the other day of looking at my son's picture and asking who that was. Very agitated. That picture has been displayed for 1-2 years.
"New" neurologist we visited today said, "Don't stop" when I asked about stopping Exelon 9.5 and Namenda 10 mg 2x a day. "We don't know whether it's helping or not, but if it is, you don't want to deal w/what will happen if we stop it. Then if you want to start again, hb won't regain what he's lost. I don't want to keep paying (we're in the donut hole) for meds I can't see are slowing anything. Doc said, "Well w/new health program, next year there won't be a donut hole." And I'm thinkin' "Yeah, but this is 3 1/2 months left this year." Outcome is inevitable any way you look at it.
Thank you for the suggestion. I think it would be worth their time if doctors and nurses at least did some reading on this site. EXPERIENCE counts! Of course, everyone's different, but....