My husband was diagnosed with Alzheimer's and/or dementia about one year ago. He was prescribed Donapezil but we saw no positive effects, rather he seemed to deteriorate and became very irritable. He now takes Memantine but it does not seem to have any positive effect. We heard on the radio yesterday that France has delisted these drugs and it seems that they may indeed have negative side effects. My husband has decided to stop taking Memantine. We feel we have not been given enough information by the doctors.
France has delisted Alzheimer's Drugs
- Thread starter Owlone
- Start date
I'm afraid it is pot luck whether or not these drugs help delay progression or mask symptoms.
They didn't agree with my husband and he had severe side effects but I have seen on Talking Point how many people have been helped by them.
Is it possible France has delisted these drugs to save money?
They didn't agree with my husband and he had severe side effects but I have seen on Talking Point how many people have been helped by them.
Is it possible France has delisted these drugs to save money?
There was a thread on that a while back -
https://forum.alzheimers.org.uk/threads/france-bans-aricept.110189/
As I said on that thread my husband took Aricept for a good number of years. I believe that it helped him but of course I have no proof. He certainly had no ill effects having taken it. He had Alzheimers for 15 years from diagnosis until death and took Arciept and then another anti cholinesterase inhibitor (Exelon/Rivastigmine) for most of that time. Everyone, of course, is different and as I say I have no proof that it was the drug which allowed him to have so many years before he began to decline badly.
https://forum.alzheimers.org.uk/threads/france-bans-aricept.110189/
As I said on that thread my husband took Aricept for a good number of years. I believe that it helped him but of course I have no proof. He certainly had no ill effects having taken it. He had Alzheimers for 15 years from diagnosis until death and took Arciept and then another anti cholinesterase inhibitor (Exelon/Rivastigmine) for most of that time. Everyone, of course, is different and as I say I have no proof that it was the drug which allowed him to have so many years before he began to decline badly.
I heard this on the radio today, but didn't catch the whole story. Dad took donepazil for a while but it made him worse. So he's now on a low dose of memantine but I can't honestly say I've seen any difference. His GP is carrying out a medication review tomorrow so I'll see if anything comes of that.
I listened to the discussion on R4 today. Apparently they have been monitoring these drugs and believe they make no significant difference and can do harm. One point was about lowering heart rate and this indeed was why my husband was not prescribed the first two here in Scotland. Th third one memantine had possible side effects I didnt like so I refused to let John take that either.
The cost of the drug was not a major factor in France.
The cost of the drug was not a major factor in France.
Thanks, I'm going to see if I can find it on the R4 website. I was driving at the time and couldn't concentrate on it. We definitely found problems with donepezil, which increased dad's anxiety and caused headaches.
[Found it! At the beginning of the 'Inside Health' programme, Radio 4, 3.30pm today (17 Oct)]
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I don't know why this is the news today, it happened back at the beginning of August unless it's a prelude to doing the same thing here. There's a link below which explains what the French based the decision on.
K
http://english.prescrire.org/en/81/168/55126/0/NewsDetails.aspx
K
http://english.prescrire.org/en/81/168/55126/0/NewsDetails.aspx
I am so grateful to read other people's responses. Till now I have felt in a vacuum. Today was my husband's first day without the Memantine and even though it can be seen as psychological he appears to feel better and more cheerful (no memory improvement - certainly not at this point). Even though it is not new news (comparatively) I wonder why neither the specialist nor the GP told us that France was stopping these drugs, or rather delisting them, and that there were possibly harmful side effects.
There's a link below to a BBC programme I watched recently, it covers the placebo effect and how when all the group were give a placebo nearly half said the new "medication" made them feel better and even when they were told it was a placebo and the tablets only contained rice flour wanted to carry on taking them.
Aricept/Donepezil only ever claims to work in 40 to 70% of people and then it only claims to slow it down, some of the extravagant claims people have made on here could never be made by the manufactures as there is no possibility of it reversing the disease and the manufacturers can't and don't make this claim.
It's a matter of debate as to whether amyloid plaque is actually a cause or a symptom of AZ in the first place, the generally accepted opinion is that it is a cause but there's some serious opinion that it's not and is actually a symptom so Aricept may be addressing a symptom and not a cause, so who actually knows.
I read something recently where they said that finding amyloid plaque in people with AZ and concluding that it's the cause is a bit like going to burning buildings and finding the fire brigade there means they the ones starting the fires.
Originally under the patent name of Aricept it was prescribed for late stages and was very expensive, when the patent ran out it was made generically under the name of Donepezil and became much cheaper then got prescribed as early to middle stages. My wife got it early under the original Aricept brand as she was diagnosed at 55 and was given it early stages as part of a test and the consultant had to get authorisation to do this, I don't have a clone of my wife so I don't know if it worked or if things would have gone the same way without it but either way like most of the people sectioned with her, long term it doesn't work, maybe it slowed it down, maybe that's what made her decline more episodic which went plateau to over the edge of a cliff sometimes in a day.
Maybe the French are right and it's better to spend the money on care and physical help rather than medications, help people live a better quality of supported life for the person with AZ and their carers rather than a possible larger quantity of life and offering some real support rather than a medical crutch useful or not...who knows.
K
https://www.bbc.co.uk/programmes/b0bmblb8
Aricept/Donepezil only ever claims to work in 40 to 70% of people and then it only claims to slow it down, some of the extravagant claims people have made on here could never be made by the manufactures as there is no possibility of it reversing the disease and the manufacturers can't and don't make this claim.
It's a matter of debate as to whether amyloid plaque is actually a cause or a symptom of AZ in the first place, the generally accepted opinion is that it is a cause but there's some serious opinion that it's not and is actually a symptom so Aricept may be addressing a symptom and not a cause, so who actually knows.
I read something recently where they said that finding amyloid plaque in people with AZ and concluding that it's the cause is a bit like going to burning buildings and finding the fire brigade there means they the ones starting the fires.
Originally under the patent name of Aricept it was prescribed for late stages and was very expensive, when the patent ran out it was made generically under the name of Donepezil and became much cheaper then got prescribed as early to middle stages. My wife got it early under the original Aricept brand as she was diagnosed at 55 and was given it early stages as part of a test and the consultant had to get authorisation to do this, I don't have a clone of my wife so I don't know if it worked or if things would have gone the same way without it but either way like most of the people sectioned with her, long term it doesn't work, maybe it slowed it down, maybe that's what made her decline more episodic which went plateau to over the edge of a cliff sometimes in a day.
Maybe the French are right and it's better to spend the money on care and physical help rather than medications, help people live a better quality of supported life for the person with AZ and their carers rather than a possible larger quantity of life and offering some real support rather than a medical crutch useful or not...who knows.
K
https://www.bbc.co.uk/programmes/b0bmblb8
