My husband has been on it for a couple of years. He's on the lowest dose. He had wild dreams so moved it to a morning dose from evening. When we stepped up, he had really bad diarrhea, so we went back down. He is declining, but nothing drastic. I don't know if it's helping, but not willing to discontinue and find out!
Hello:
One thing I found out yesterday on a Q and A webinar with an Alzheimers and Dementia doctor, is that Donepezil and Memantine may not be the right med for my spouse who has Frontotemporal dementia, behavioral variant. His own PCP did not say anything about this when he prescribed both meds, probably didn't know.
It's tough when your own doctors aren't up to speed with the latest research and knowledge.
Hi....we were also prescribed that....and my hubby with Lewy Body Dementia did take it for about a year then he developed severe headaches and increased anxiety. The doctors at Mayo Clinic said it had "run its course" and told me how to taper him off of it. We have found out that most medications do not work as they are supposed to in Lewy Body Dementia and some of the side effects have been horrible. We tried klonopin/ xanex/seroquel/buspar/ and some others. The best thing that has helped him has been low dose trazadone with a low dose melatonin at bedtime and small doses of CBD oil in the daytime. As a side note, I am not the kind of person that goes against medical advice.....but nothing else was working and I became desperate to try anything to help him. His behavior was getting hard to manage at home, and I could not even begin to think of placing him in a facility. An orthopedic doctor mentioned the CBD to me for arthritis in my hand, and I bought some to try but never used it. One day my husband was almost out of control, and I remembered the CBD. Gave him some and within 45 minutes he was a different person. It took awhile to get the dose correct for him....but now he is so much easier to manage, and he is, for the most part, calm. I do buy CBD from the same place and keep him on the same brand. I did a lot of research and pay for quality, lab produced, CDB...but if I had to sell the house to afford it, I would! The difference in my husband and the ability to keep i at home is worth every penny. Hope this helps someone.
My husband has been on it for a couple of years. He's on the lowest dose. He had wild dreams so moved it to a morning dose from evening. When we stepped up, he had really bad diarrhea, so we went back down. He is declining, but nothing drastic. I don't know if it's helping, but not willing to discontinue and find out!
@cyds
I could mirror your comment with the exception that my husband has been on it since 2021. He has no side effects so not willing to take him off of it. It could be helping and it may not be, but it's not expensive and he tolerates it well.
I am new at this, my wife only has a preliminary diagnosis from a blood test which shows she has some amyloids, is going to get a PET scan to discovery further. Have to see whether what you described applies to her. We will see. Has your spouse been taking Donepezil and if so, any bad results?
Hi Paul55,
My husband has been taking this for many years. Initially I did not rush to get a prescription for him because I had the impression that those longstanding drugs were not very effective. But people in my support group indicated that they saw benefits. One person said that she estimated that she got two years of almost no decline in her sister. Of course, everyone is different and we do not have a "control" husband to use to test whether the drug had an effect. :).
Our gerontologist recommended both Donepezil and MEMANTINE together. He has remained on both. At one point the doctor suggested we stop using that Donepezil, believing that it had had all the effect that could be expected. But my husband started to have lower moods so we put him back on it and he is doing fine. Now, when I talk to people starting the Alzhiemer's/dementia journey, I recommend that they ask their doctors right away about both of these medications. They are not a cure, but if they give you a couple of years of abatement, that is a great thing! In addition, they tolerated well by many people. So many of the new drugs come with very scary and very likely side effects.
Wishing you well. I know it is scary at the beginning. Regardless of the test results, use this as an opportunity to tune your lives to the things that bring you the most joy.
Hi Paul55,
My husband has been taking this for many years. Initially I did not rush to get a prescription for him because I had the impression that those longstanding drugs were not very effective. But people in my support group indicated that they saw benefits. One person said that she estimated that she got two years of almost no decline in her sister. Of course, everyone is different and we do not have a "control" husband to use to test whether the drug had an effect. :).
Our gerontologist recommended both Donepezil and MEMANTINE together. He has remained on both. At one point the doctor suggested we stop using that Donepezil, believing that it had had all the effect that could be expected. But my husband started to have lower moods so we put him back on it and he is doing fine. Now, when I talk to people starting the Alzhiemer's/dementia journey, I recommend that they ask their doctors right away about both of these medications. They are not a cure, but if they give you a couple of years of abatement, that is a great thing! In addition, they tolerated well by many people. So many of the new drugs come with very scary and very likely side effects.
Wishing you well. I know it is scary at the beginning. Regardless of the test results, use this as an opportunity to tune your lives to the things that bring you the most joy.
@memoriestomoments Thanks so much for the info and the encouragement. We are early in the process. Just started on the beginning dose of donepezil. Know more after the PET scan. My wife's only symptom right now is a very bad memory. But when we meet with her neurologist in February, our first meeting really, I will ask her about Memantine. We are trying to enjoy life--have been doing so for quite a few years now prior to any diagnosis. Will continue. Thanks again and hope things go well for you and your husband.
My husband had a bad reaction to Donepezil, I was driving us in his truck and thought we were in my car, he didn't know where he was. The doctor took him off the medication.
@colleenyoung
My husband was first on this drug only. Now he takes donepezil and also from time to time forgets where our sons room is and the vacuum cleaner. But if you tell him we all forget from time to time, and you give him time and little hints. He gets better, and can replace the vacuum cleaner into a working condition. What more can I ask for.
Take the good with the bad and try to be patient.
My wife has been on Donepezil for about 15 months since her diagnosis. It seemed to be working for most of the time but her short term memory has begun to deteriorate rapidly in the last couple of months. She still refuses to accept the diagnosis. She has retained her sense of humour which is good but when she has to put things away she has trouble remembering where they go so now she just leaves them out and I put them away. Sivad
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My husband has been on it for a couple of years. He's on the lowest dose. He had wild dreams so moved it to a morning dose from evening. When we stepped up, he had really bad diarrhea, so we went back down. He is declining, but nothing drastic. I don't know if it's helping, but not willing to discontinue and find out!
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Like -
Helpful -
Hug
2 ReactionsHi....we were also prescribed that....and my hubby with Lewy Body Dementia did take it for about a year then he developed severe headaches and increased anxiety. The doctors at Mayo Clinic said it had "run its course" and told me how to taper him off of it. We have found out that most medications do not work as they are supposed to in Lewy Body Dementia and some of the side effects have been horrible. We tried klonopin/ xanex/seroquel/buspar/ and some others. The best thing that has helped him has been low dose trazadone with a low dose melatonin at bedtime and small doses of CBD oil in the daytime. As a side note, I am not the kind of person that goes against medical advice.....but nothing else was working and I became desperate to try anything to help him. His behavior was getting hard to manage at home, and I could not even begin to think of placing him in a facility. An orthopedic doctor mentioned the CBD to me for arthritis in my hand, and I bought some to try but never used it. One day my husband was almost out of control, and I remembered the CBD. Gave him some and within 45 minutes he was a different person. It took awhile to get the dose correct for him....but now he is so much easier to manage, and he is, for the most part, calm. I do buy CBD from the same place and keep him on the same brand. I did a lot of research and pay for quality, lab produced, CDB...but if I had to sell the house to afford it, I would! The difference in my husband and the ability to keep i at home is worth every penny. Hope this helps someone.
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Helpful -
Hug
3 Reactions@cyds
I could mirror your comment with the exception that my husband has been on it since 2021. He has no side effects so not willing to take him off of it. It could be helping and it may not be, but it's not expensive and he tolerates it well.
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4 ReactionsThanks to all for the information!
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2 ReactionsI am new at this, my wife only has a preliminary diagnosis from a blood test which shows she has some amyloids, is going to get a PET scan to discovery further. Have to see whether what you described applies to her. We will see. Has your spouse been taking Donepezil and if so, any bad results?
-
Like -
Helpful -
Hug
2 ReactionsHi Paul55,
My husband has been taking this for many years. Initially I did not rush to get a prescription for him because I had the impression that those longstanding drugs were not very effective. But people in my support group indicated that they saw benefits. One person said that she estimated that she got two years of almost no decline in her sister. Of course, everyone is different and we do not have a "control" husband to use to test whether the drug had an effect. :).
Our gerontologist recommended both Donepezil and MEMANTINE together. He has remained on both. At one point the doctor suggested we stop using that Donepezil, believing that it had had all the effect that could be expected. But my husband started to have lower moods so we put him back on it and he is doing fine. Now, when I talk to people starting the Alzhiemer's/dementia journey, I recommend that they ask their doctors right away about both of these medications. They are not a cure, but if they give you a couple of years of abatement, that is a great thing! In addition, they tolerated well by many people. So many of the new drugs come with very scary and very likely side effects.
Wishing you well. I know it is scary at the beginning. Regardless of the test results, use this as an opportunity to tune your lives to the things that bring you the most joy.
-
Like -
Helpful -
Hug
9 Reactions@memoriestomoments Thanks so much for the info and the encouragement. We are early in the process. Just started on the beginning dose of donepezil. Know more after the PET scan. My wife's only symptom right now is a very bad memory. But when we meet with her neurologist in February, our first meeting really, I will ask her about Memantine. We are trying to enjoy life--have been doing so for quite a few years now prior to any diagnosis. Will continue. Thanks again and hope things go well for you and your husband.
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Helpful -
Hug
4 Reactions@dsetex, how is your husband doing without medication? How are YOU doing?
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1 Reaction@colleenyoung
My husband was first on this drug only. Now he takes donepezil and also from time to time forgets where our sons room is and the vacuum cleaner. But if you tell him we all forget from time to time, and you give him time and little hints. He gets better, and can replace the vacuum cleaner into a working condition. What more can I ask for.
Take the good with the bad and try to be patient.
-
Like -
Helpful -
Hug
3 ReactionsMy wife has been on Donepezil for about 15 months since her diagnosis. It seemed to be working for most of the time but her short term memory has begun to deteriorate rapidly in the last couple of months. She still refuses to accept the diagnosis. She has retained her sense of humour which is good but when she has to put things away she has trouble remembering where they go so now she just leaves them out and I put them away. Sivad
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Like -
Helpful -
Hug
2 Reactions