Donepezil and drinking

[LindyN]

Dear everyone

I'm new to the Forum. My husband was diagnosed almost three months ago. We have very good doctors in a fantastic research-oriented hospital.

He's doing well at the moment but I know he has a degenerative disease. I wonder if he believes in the diagnosis himself although we have been shown the brain scans.

Has anyone suspected their partner didn't believe in the diagnosis?

Another problem is trying to keep him drinking at most one glass of wine a day on Donepezil which is what the Doctor told him to do. I can't stop him from drinking the equivalent of three glasses of wine a day. Does anyone know if that will harm him?

I worry a lot although I try to keep cheerful. We have our children near us and grandchildren and altogether a lot of fun. I work quite a lot, mostly from home, but I have to go in to work for meetings from time to time.

I'm feeling a bit down at the moment. I find organising everything and also having to repeat arrangements for each day several times rather a strain.

But it's good to be able to write this down.

Good luck to everyone taking care of partners with Alzheimer's.

LindyN

 

[Izzy]

Hi there and welcome to Talking Point.

I'm sorry to hear of your husband's diagnosis.

I'm not entirely sure about your question regarding Donepezil and alcohol. I just googled it and the patient leaflet says you shouldn't take alcohol whilst on this drug -

https://www.medicines.org.uk/emc/product/3938/pil -

Donepezil tablets with alcohol
You must avoid drinking alcohol while you are being treated with Donepezil tablets, because it could reduce the effect of Donepezil tablets.

My husband had Alzheimer's and was on Donepezil for a good number of years. I wouldn't say he had a drink every night but I have to confess that he did have an alcoholic drinks during the week. I had no problems with him in relation to this but I suppose I can't say if this made any difference to the effect of the drug.

 

[LindyN]

Thank you Izzy. It's lovely to get a reply. I'm reassured that the odd drink didn't seem to harm your husband. I know the advice is no alcohol but we certainly aren't managing that!

 

[Izzy]

Thank you Izzy. It's lovely to get a reply. I'm reassured that the odd drink didn't seem to harm your husband. I know the advice is no alcohol but we certainly aren't managing that!

Of course others may have different views and experiences of this!

Good luck!

 

[LynneMcV]

When my husband was taking donepezil the GP and our consultant said it was ok to drink in moderation.

I suppose it depends on one's definition of moderation. With us we restricted it to special occasions such as birthdays, anniversaries, Christmas etc - during such times we would share a bottle of wine.

Later on, when a variety of different medications were added to the picture, my husband happily stuck to non-alcoholic lager like Becks Blue - he couldn't tell the difference between that and the real stuff but it helped him feel part of the social scene.

 

[Beate]

As for the first question, someone not believing their diagnosis, yes, that's incredibly common, but there is also no point in trying and convincing him so just let it rest.

As for the alcohol, I gave John non-alcoholic beer and he was happy as Larry. Like Lynne's husband, he couldn't tell the difference. Might work for wine as well?

 

[Duggies-girl]

My dad likes a tot of whisky at bed time. I monitor the bottle and that is all he has just the one tot. I won't stop him as he is 88 years old and enjoys it. Got to have something to look forward to.

 

[Izzy]

My dad likes a tot of whisky at bed time. I monitor the bottle and that is all he has just the one tot. I won't stop him as he is 88 years old and enjoys it. Got to have something to look forward to.

That was my feeling with my husband.

 

[Duggies-girl]

That was my feeling with my husband.

I'm staying with him tonight so I will have one too. Cheers dad.

 

[Izzy]

I'm staying with him tonight so I will have one too. Cheers dad.

Quite right!

 

[Grahamstown]

Dear everyone

I'm new to the Forum. My husband was diagnosed almost three months ago. We have very good doctors in a fantastic research-oriented hospital.

He's doing well at the moment but I know he has a degenerative disease. I wonder if he believes in the diagnosis himself although we have been shown the brain scans.

Has anyone suspected their partner didn't believe in the diagnosis?

Another problem is trying to keep him drinking at most one glass of wine a day on Donepezil which is what the Doctor told him to do. I can't stop him from drinking the equivalent of three glasses of wine a day. Does anyone know if that will harm him?

I worry a lot although I try to keep cheerful. We have our children near us and grandchildren and altogether a lot of fun. I work quite a lot, mostly from home, but I have to go in to work for meetings from time to time.

I'm feeling a bit down at the moment. I find organising everything and also having to repeat arrangements for each day several times rather a strain.

But it's good to be able to write this down.

Good luck to everyone taking care of partners with Alzheimer's.

LindyN

My experience and that of my husband is almost the same as yours. He has just been prescribed Donepezil. After a lot of discussion with the GP he seemed to accept that he should not drink except on special occasions. Tonight he said he was going to the pub and then wanted his glass of wine! He then said that there was nothing wrong with him and couldn’t see why he can’t drink. I managed to distract him and he had a glass of watered down wine and didn’t appear to notice followed by a non alcoholic drink. What I am going to do when he starts the drug I have no idea. I really do want it to work as well as possible because it is early enough in the course of the disease to help and alcohol stops it working properly and makes side effects more likely. I too get down and worn out with the effort but TP keeps me going.

 

[LindyN]

Thank you so much for all your replies. It's such a comfort to read about people experiencing the same things. I don't feel alone any more and it's great to think I can start a new thread and talk to all of you who find yourselves in the same rocky boat.

 

[LindyN]

Just to add that I did find a research article published in November 2017. The authors had found that Donepezil acted as a 'cholinesterase inhibitor'. That suggests that Donepezil may work to slow the progression of the disease slightly. Donepezil was previously considered a cosmetic type of drug, making things appear better (like make up) but leaving deterioration beneath the surface.

Whatever the scientific discoveries, Donepezil does seem to have a positive impact on symptoms which is a great bonus.

 

[Izzy]

I do believe that Donepezil slowed the progression of the disease for my husband. He was diagnosed in 2001 and took Aricept for at least 10 years. He was then changed to Rivastigmine (Exelon) which is another anticholinastetase inhibitor. He took this until a year or so before his death in 2016. I’ve no proof but I do think think they slowed things down.

 

[Countryboy]

I do believe that Donepezil slowed the progression of the disease for my husband. He was diagnosed in 2001 and took Aricept for at least 10 years. He was then changed to Rivastigmine (Exelon) which is another anticholinastetase inhibitor. He took this until a year or so before his death in 2016. I’ve no proof but I do think think they slowed things down.

Hi Lzzy hope your ok, just read your reply and note that your husband was prescribed Aricept in 2001 I find that interesting mainly because I was asked if I take Aricept in 1999 when it was still on trial having been first introduced in UK in July 1998 it was only prescribed by Consultants and the Chemist had to order the Aricept, it was probably the end of 2001 beginning of 2002 that the GP’s started prescribing Aricept but only then in conjunction with the Consultant I think the cost of the drug was split between the Clinic and GP I’m not sure but I think around 2008 or 2009 GP’s starting prescribing the generic donepezil, I never had the generic tablet and still get the Eisai Aricept in the blue & white box I expect you remember that , I must be among the first one in UK taking Aricept now unless there are any who started in 1998 ?? maybe a few

take care xx

 

[Izzy]

Hi @Tony I’m in Scotland so not sure if the timing was any different here. Bill was prescribed Aricept by the consultant st the memory clinic in October 2001. He got his prescriptions from her every 3 months following the regular MMSE test etc. It was only after a good number of years that things changed slightly. I can’t remember exactly when but the GP became responsible for prescribing it. We still went to the memory clinic for the tests but then the consultant contacted the GP to say he should continue to prescribe it.

 

[Countryboy]

Hi @Tony I’m in Scotland so not sure if the timing was any different here. Bill was prescribed Aricept by the consultant st the memory clinic in October 2001. He got his prescriptions from her every 3 months following the regular MMSE test etc. It was only after a good number of years that things changed slightly. I can’t remember exactly when but the GP became responsible for prescribing it. We still went to the memory clinic for the tests but then the consultant contacted the GP to say he should continue to prescribe it.

Hi Lzzy were at opposite ends of Country what you just described is very similar only I saw the Consultant every month possibly because they monitoring me with the test and went down to every 3 months after a couple of years I was being supported by a Occupation Therapist because I wouldn’t give up work I was 57 and was 8 years off retirement needed to think about my finial salary pension if I retired early looking back now I’m glad I fought for that it wasn’t easy you may remember some of my threads back in 2005-06 I went through several battles with bureaucrats ( but hay I won all but one of them albeit in one case it took 12 years) wrote a column in the Alzheimer’s magazine in 2007 got in big trouble over that but I was a bit of aggressive and had a lot of fight in me back them but had great support from all my medical team also KatherineW she was very helpful, and my friend Barry from Indonesia great guy we emailed each other several times a week until he passed away.

Lzzzy sorry for a long reply and for using Lindy’s thread

so Lindy I have FTD but never drank a beer in my life and only tasted wines ect but not really drank a whole glass so not much help on alcohol I’m afraid, also Lindy I didn’t believe my diagnoses of Alzheimer’s in 1999 and maybe not even now But I did have extensive memory tests plus brain scans and a PET (Positron Emission Tomography): in 2003 and a SPECT (Single Photon Emission Computed Tomography) in 2004 result FTD and was diagnosed from the tests its never bothered me I’m still the same old me

 

[Grahamstown]

So very glad that you have managed whatever it is you have so well Tony. My overall impression from searching the forums together with what I have read and what the GP said is that donepezil will be most effective in the absence of alcohol. So if you want maximum benefit keep off the booze is the best advice. It makes sense to me because most drugs don’t work properly with alcohol and some are even dangerous. It doesn’t seem to be the case with donepezil but it can’t be good. The drugs I am on don’t work so well with alcohol and since I stopped having it I have noticed how much better I feel and sleep. I can make that rational judgment though which my OH seems unable to do in spite of his ability, the ravages of the disease, which, of course, he does not have.

 

[Country lady]

Tony- you are a very lucky man. I agree that diagnosis is a bit like 'roulette'. My husband was diagnosed following MRI Brain which showed no significant changes. Then, it was suggested he might qualify for a Clinical Trial, and he had PET scan which showed SOME symptoms that MIGHT be Alzheimers type. He is now on a clinical trial for Alzheimers,- which is not helping him at all. Though I should not say it, I feel that the diagnosis of Alzheimers was a touch convenient at the time....... His symptoms are more like Vascular Dementia- and this is also suspected by our GP. He is also on Aricept - and he takes the odd drink. I feel that if he wants a drink ( never overdoes it)- then he should have one.
His short term memory is appalling- but we keep doing what we can. He went on a long cycle over Easter, and managed just fine- was skiing at Christmas with the Family( that took a lot of persuading- but sticking to easy slopes it was grand) etc. V dependant on me, but Im planning a holiday in Greece in May, sailing with friends, which he is looking forward to. There will be issues - he cannot help at all, and will be a nightmare using toilet, but I am determined that we shall manage, and our friends will help to supervise him.

 

[Grahamstown]

@Country lady most helpful comments and I think the key words are ‘the odd drink’. That’s what the GP said. The problem is that he keeps on wanting more and keeps topping up, unless I give him help which sometimes he won’t take. I have strategies now and have some success unless I am out.