Medication for AD - Having doubts about whether any of it helps at all.. anyone else?

[ameliaria]

Is it worth bothering with any of it?

My husband has recently been diagnosed with AD and is in the early stages. He is still very sociable but his memory and knowledge of how to do stuff is pouring away from him at an alarming rate. He has been prescribed Aricept and took it reluctantly for a few weeks. He has not got on to the higher dose.

I dont know whether it made a difference because he has now decided that he doesnt want to take any medication. He has always resisted medication throughout his life. At first I more or less forced him to have it . Now I dont think I can do this into the future-especially when the outcome is so uncertain. At the end of the day he is 85 and has had a good life - fit and active until this.
Ameliaria

 

[retired]

Thanks for everybody's comments on medication dilemma.I think my wife was too far down the line before taking Donepezil as it was useless for her.I still worry about stopping it but feel deep down its the right thing to do for her

 

[Raford]

My husband has AD, middle stages, I am torn between whether the 'cocktail' of drugs he takes are doing him any good at all. I feel they are either having no effect, therefore what is the point?

I sometimes feel they make him worse! He get meds checked every 6 months by a Neurologist. What I can't understand is when you look at some of the side effects of these drugs...they can cause the very symptoms they are being taken for in the first place...'confusion' 'lethargy' 'mood swings' 'tiredness' disorientation' 'memory loss'etc etc , I could go on and on.

I know there is no cure for AD, is it just me or are we being prescribed drugs that could either be doing nothing at all, or indeed making the person worse? I believe most Doctors are mainly advised by the drug companies, so who do we believe. I just wonder what is best...taking a cocktail of chemicals, or let nature and the body take it's own course. I just see NO improvement, in fact the complete opposite.

The drugs he takes for AD: Memantine(Ebixa), Setraline, Mirtazapine, and some Prometax (patches) which I haven't started yet...

Anyone's comments please?? I don't think I am alone here.

PS I live in Portugal, therefore I have to pay around €150.00 a month for these meds, it's not the money, but if I saw some benefit at least it would seem worthwhile.

I live in US and Your post could have come from me. I have come to the conclusion that none of the meds have any AZ benefit at all. When I talk with others who have been down this road, all of them said the same thing, "You must save yourself." If the meds do nothing to alter the progression of AZ the only thing you can do is find something to control mood swings especially 'sundown syndrome'. My wifes prescription for Quetiapine is for schitsophrenia (sp?). It helps a little but I found that melatonin (over the counter in US) works marvels. It does nothing for AZ but her taking it saves my life. You are not alone and that 150?? sounds like a lot of money to accomplish nothing. Raford B.

 

[plumbrite66]

medication

My wife is on Donepezil .Specialist if it made her sick in any way stop takeing it,as it didn't really matter one way or another,so far so good she takes one pill a day ,but it only slows progress slightly or so I believe .

 

[farvenoel]

Patches

It's hard to say. My mum has been on Aricept, Galantamine, Citalopram, Sertraline, Quetiapine, Metazapine and we stopped all of them as the side effects outweighed the benefits. The Citalopram and Sertraline made her hyper active, as did the metazapine (along with craving sweet things which gives you even more energy), Aricept made her agitated and have angry mood swings plus painful stiffened muscles, not sure what Galantamine did as she wasn't on them long enough before the doctor stopped them and put her on Metazapine and Quetiapine (the latter made her extremely angry) so WE stopped them after 5 days. She was off everything and we paid to see a private consultant who is now trying her on Exelon patches. It's far too early to say what effect these are having/will have but hopefully she won't suffer any of the side effects as with the others and they bring benefits.

I think everyone is different and what suits one person won't suit another. Some people have reported very good results from some medications so it's hard to know whether to continue or stop. I am sure others with much more experience of the drugs you mention will also post their comments.

How are you getting on with the patches?
If they are working, where are they placed and for how long.

Regards, Noel

 

[Spamar]

My husband was prescribed donepezil in the early stages and I believe that it slowed the rate of onset of the disease. When he had delusions earlier this year he was put on quentiapine. He dosage wuss quickly increased to deal with the delusions. However, it caused him to put on weight and sleep even more than he did previously. This has been changed to memantine and he has lost weight and got some of the old sparkle back. He is also on citalipan (spelling?) which seems to have little effect on him, but made me so tired all day I had to stop it. Horses for courses!

 

[Big "H"]

Hi There

My wife has Vascular Dementia and my GP prescribed "Trazodone" to treat Anxiety and Depression, she is now taking 200mg a day 100 before going to bed and 100 in the morning and quite honestly I don't see that they are having any effect at all as she is on edge all the time jumping at any little noise and will not leave my side. I know that there is no medication to treat the illness but wonder if anyone can advise of other medication being used?

Big "HE

 

[chingford]

Memantine. .

my wife has been on Memantine for some time.a few weeks ago she was at a new low.could hardly talk.just not with me at all.i had had my doubts about this drag for some time.so i stopped giving this drug.that was about thre weeks ago now.there has been a marked inprovement since then.at this moment in time i can see no point in useing this or any drug again.she is talking to me again.and is so much better.

My husband has AD, middle stages, I am torn between whether the 'cocktail' of drugs he takes are doing him any good at all. I feel they are either having no effect, therefore what is the point?

I sometimes feel they make him worse! He get meds checked every 6 months by a Neurologist. What I can't understand is when you look at some of the side effects of these drugs...they can cause the very symptoms they are being taken for in the first place...'confusion' 'lethargy' 'mood swings' 'tiredness' disorientation' 'memory loss'etc etc , I could go on and on.

I know there is no cure for AD, is it just me or are we being prescribed drugs that could either be doing nothing at all, or indeed making the person worse? I believe most Doctors are mainly advised by the drug companies, so who do we believe. I just wonder what is best...taking a cocktail of chemicals, or let nature and the body take it's own course. I just see NO improvement, in fact the complete opposite.

The drugs he takes for AD: Memantine(Ebixa), Setraline, Mirtazapine, and some Prometax (patches) which I haven't started yet...

Anyone's comments please?? I don't think I am alone here.

PS I live in Portugal, therefore I have to pay around €150.00 a month for these meds, it's not the money, but if I saw some benefit at least it would seem worthwhile.

 

[chingford]

memantine

My wife has been on this drug for a long time.a few weeks back she was at a new low.could not talk.she just lay there.i had some doubts this drug for some time.so decided to not to give her any more.there was nothing else i could do. since then there has been a marked improvement.she sits and talks to me and looks so much better.her carers say the same,at this moment in time she is drug free.and is better than she has been for some time,i have no intention of giving her this or any drug as things are,i will keep you posted of any change. chingford.

 

[Padraig]

When I removed my wife from a NH I was given a paper bag full of medicines. These I handed over to our local doctor. The drugs as far as I was concerned were for illnesses. Many of the underlying causes of the illnesses were avoidable in the first place.
There were times when a pain killing treatment was required for a short period, but at no stage did she have drugs for AD. I've posted photos on these boards of my wife showing the difference of NH care and one to one care at home.
I'm only too well aware that it is impossible for most carers to provide one to one care at home and the only option open is to place their loved one in a NH.
It is so frustrating to read so many sad posts and not to be able to help. You mention, almost every problem carers encounter I dealt with alone, in my own way. It was my choise and I have no regrets it was an experience a very few are privelaged to have.

 

[donandpam]

pam

How many other people watched the news tonight about this new drug. 10yrs!!!!!!!! How many of you would be happy to try it on your loved ones now. After all what have they got to lose, and what have we got to gain. I was brought to tears when that lady stated that their lives had ended because of this terrible disease, I know ours have. It could do so much for us now, we cannot wait 10yrs.

 

[superstar]

My wife has been on this drug for a long time.a few weeks back she was at a new low.could not talk.she just lay there.i had some doubts this drug for some time.so decided to not to give her any more.there was nothing else i could do. since then there has been a marked improvement.she sits and talks to me and looks so much better.her carers say the same,at this moment in time she is drug free.and is better than she has been for some time,i have no intention of giving her this or any drug as things are,i will keep you posted of any change. chingford.

I agree very much in what you are saying as there was a dramatic change in my dad when we stopped his drug I have posted all about it on here today,please read. (dad is 84 )

 

[acacia]

Living in Spain

It was last January when I was so worried about O.H. Over the last 10 months he has improved so much apart from slight confusion in the morning which doesn't last long hes my lovely man again. Our Dr. has stopped the statins for colestrol. All he is taking is the Somazina, Coconut Oil, Serv. and Vitamin B6 and Omega Oil. Our friends and relatives have noticed the change in him so have the locals in his bar. I do hope some of you can find some peace from this terrible illness which devastates so many lives. Perhaps in the the future this new drug will alliviate all the pain for the sufferers and the carers. I feel that me and my O.H. are so lucky at the moment I just hope it continues. Acacia.

 

[clareglen]

How many other people watched the news tonight about this new drug. 10yrs!!!!!!!! How many of you would be happy to try it on your loved ones now. After all what have they got to lose, and what have we got to gain. I was brought to tears when that lady stated that their lives had ended because of this terrible disease, I know ours have. It could do so much for us now, we cannot wait 10yrs.

Yes, even my mum, who has dementia & denies it, when she saw the news said I'll take it - so must have an awareness of her condition.

 

[sarafina]

My Mums Dementia.

Hi There

My wife has Vascular Dementia and my GP prescribed "Trazodone" to treat Anxiety and Depression, she is now taking 200mg a day 100 before going to bed and 100 in the morning and quite honestly I don't see that they are having any effect at all as she is on edge all the time jumping at any little noise and will not leave my side. I know that there is no medication to treat the illness but wonder if anyone can advise of other medication being used?

Big "HE

My Mums 91, she has Mitrazapine 15mgs a day ( increases appetite ) and Oxazepam. ( tranquilliser) for anxiety, which really does help her through her horrid times. I have no hesitation in giving her it as to see her anxious and worried is purgatory for her. Tell your GP what you think she needs and stand your ground, ask for a phone consult and don't be fobbed off with ' well there addictive', does it really matter ?

 

[Gigglemore]

Memantine really helped my Mum - GP has now added Citalopram

I came on this thread while searching for any comments on Citalopram.

My Mum agreed to go for memory testing only because she was finding it difficult to use everyday words such as "carrot" "photo" etc. I had believed for some time before the formal testing that she had AD. Diagnosed with mixed dementia and started on Memantine which was a miracle drug for us as it totally resolved her "missing vocabulary" difficulties within the first fortnight and is still working in this respect over a year later.

Unfortunately her short term memory has continued to deteriorate quite quickly. Just after Xmas she started complaining of aches and pains and I took her to a new GP (old one who knew my chatty Mum and had been wonderful in helping to persuade her to go to Memory Clinic had unfortunately left). Mum had become incredibly depressed and listless and it just broke my heart trying to jolly her out of just wanting to die - she was generally fairly fit and well although has osteoporosis. I went on holiday in Jan (she lives with me) and had arranged for lots of visitors to the care home (which she had loved when she first went into respite late last year). Most were shocked at the sudden change in Mum's appearance. Had to take her back to respite after coming back from hol as could not manage at home. Despite her sleeping a lot they wanted to increase her sleeping tablets which were only prescribed for "if required". I arranged for another GP to visit us at the respite home and wrote an essay of how good Mum was up to Xmas then the sudden decline and was it possible to have some kind of anti-depressant rather than sleeping tablets which I felt were just making her more listless and confused. 10mg Citalopram started and home told to stop sleeping tablets. Just over a week later she is greatly improved, looking more like my old Mum so don't know if it is the Citalopram kicking in so quickly - was told it would take a couple of weeks. She is still really confused and has a terrible memory but her anxiety and depression have almost disappeared. Don't know if it is the new tablets - has anyone else had such a quick result? Having read some of the comments about side effects am holding my breath in case any develop over the next week or two.