Stopping Donepezil

[Linbrusco]

Mum 77 progessing from moderate/severe stage to end stage Alzheimers.
As she goes through bouts of not eating, refusing medication, much of her meds over the past year have been stopped.
Recent weeks her mobility has become quite poor, shes barely eating or drinking.
Any thoughts on stopping
Donepezil? Mum has been on 5 mg for 5 years.
Psychiatric Team feel 5mg is no longer beneficial and just one extra medication to take and whether it may be causing any tummy upset? and hopefully her appetite might improve but on the other hand it might make Mums Alzheimers decline further.
Mum is only on Quetiapine 75mg a day and has done for over a year. Each time they try and reduce Mums dose she becomes agitated and combative.

 

[karaokePete]

If the Donepezil is stopped any benefits will fade. If the benefits are nil I suppose there is nothing to lose.

This recent thread indicated that the med doesn't actually stop the decline so nothing unusual may be noticed. With my wife, her Alzheimer's meds quickly reduced the symptoms but I have always noticed a continued, slow, decline.

 

[Izzy]

My husband was on Donepezil for around 11years. When they thought it was not having much effect it was changed to Rigastigmine. He was on that for around another years. Eventually I was told that his MMSE (mini mental state exam) score was too low for the guidelines to allow it to be continued. By that time I think he was scoring less than 10. I did put up a fight and try to get them to allow him to continue the drugs but in the end I gave in. To be honest I don't think I noticed any difference once they were stopped. He had around another 2 years with no medication for the dementia.

 

[Countryboy]

Hi Izzy I have been on Aricept since November 1999 almost Twenty years it wasn’t prescribed by GP back then only the Consultants prescribed I was put on the generic equivalent donepezil but was quickly put back on Aricept again in less than a month when I started to go into decline , I note on the tablet box they come from Hertfordshire so I suppose it will be ok after Brexit , If not well not going to worry about that what will be will be at 76 had good innings obviously I won’t stay above ground forever

Merry Christmas & Happy new Year

 

[Beate]

Obviously it might be different in Scotland where Izzy lives but our consultant told us it was practice now not to take people off Donepezil just because scores dropped, as it could cause a sharp and irreversible downturn. However, when he was at end stage, everything was stopped because it was no longer deemed to help at all. I think this has to be an individual decision taking lots of factors into account.

 

[Canadian Joanne]

Here in Ontario the PoA has much more input. My sister and I decided that Mum would stay on her AD meds as long as she was physically able to take them. She took them till the last 10 days of her life.

I was never willing to chance any sort of decline.

 

[KathrynAnne]

When my Mum’s MMSE score dropped down to 4 she was taken off Donepezil and moved onto Memantine. I didn’t notice any difference really and I am not convinced that either of the drugs does any good. However I would rather she continue to take the Memantine just in case it is actually beneficial. She is on the liquid form of it so I can mix it in with a drink, making it far easier to administer.

 

[Cazzita]

My mum recently stopped donepezil as she was having so many poop accidents and is now on Exelon (Rivastigmine Transdermal System) patches - 3 weeks later, not a single accident and doing much better!

 

[Grahamstown]

After consultation with the doctor last week I have reduced the donepezil to 5 mgm a day. I had begun to think he was having some side effects of the drug and he was deteriorating. Just on observation I think he is not having as many symptoms of the side effects, his memory is just as bad but no worse. It’s a bit trial and error but I am happy with the results so far and will continue with 5mgm for a while and see how it goes. A quiet life with little extra stress is working for now. Now I need some respite and next year I am hoping for some help. I think the whole question about this drug is about how the individual responds. For quite a few months he was stable on 10 mgm and now I am not sure what is going on. Review in a couple of months.

 

[karaokePete]

Sickness is a common side effect with Donepezil.

My wife is sick all day if she takes it in the morning. I give it to her at night and she tolerates that well. If I ever forget to give it to her at night I just wait until the next night rather than give it to her in the morning - luckily it's a rarity for me to forget.

 

[Agzy]

After consultation with the doctor last week I have reduced the donepezil to 5 mgm a day. I had begun to think he was having some side effects of the drug and he was deteriorating. Just on observation I think he is not having as many symptoms of the side effects, his memory is just as bad but no worse. It’s a bit trial and error but I am happy with the results so far and will continue with 5mgm for a while and see how it goes. A quiet life with little extra stress is working for now. Now I need some respite and next year I am hoping for some help. I think the whole question about this drug is about how the individual responds. For quite a few months he was stable on 10 mgm and now I am not sure what is going on. Review in a couple of months.

T on as my OH has been on it for 2.5 years now and to me it rolled beck te symptoms by about 12 months and the decline is very slow indeed. She does have occasional toilet accidents but has separate bladder and bowel issues so haven’t connected them. Every little helps as they say and thankfully no discernible side effects.

 

[Linbrusco]

Mum has been off Donepezil a week.
No visible changes to behaviour or cognition.
Still not eating, surviving on small amounts of Fortasip and lemon barley drink, and has probably had the equivalent of one whole banana in a week.

 

[Amy in the US]

Lin, I'm sorry to hear about your mum's decline. There is nothing easy about this horrid disease.

 

[Linbrusco]

Lin, I'm sorry to hear about your mum's decline. There is nothing easy about this horrid disease.

Hi Amy, your a name I recognise over past 5 yrs of TP.
You know its all enevitable but if only you knew the course it would take

 

[Gladys1946]

My husband is on Donepezil and suffers from light headedness. I'm thinking of asking Consultant if he could stop it as it's making him anxious. Last week a friend was going to take him out for a walk and drink but husband cancelled saying he had diarrhea - he didn't. Now this morning he wouldn't go to church as he said his head was "all over the place". So my long Sunday morning run was ditched and it makes me feel so resentful. Am I being awful?

 

[Louise7]

No, you're not being awful, particularly as the medication is making your husband anxious. Medication that is fine for some can cause adverse side effects for others so you are right to discuss this with the consultant. How long has he been on the medication? Depending on the dosage they may try him on a lower dose first before withdrawing it completely.

 

[Gladys1946]

No, you're not being awful, particularly as the medication is making your husband anxious. Medication that is fine for some can cause adverse side effects for others so you are right to discuss this with the consultant. How long has he been on the medication? Depending on the dosage they may try him on a lower dose first before withdrawing it completely.

 

[Gladys1946]

Only been on it just over a week but I think he was better before he was prescribed it. The consultant also increased his Sertraline, so whether that is having an effect, not sure.

 

[Louise7]

It could be the sertraline increase that is causing the problem rather than the Donepezil but best to discuss with the consultant. As your husband has only just been diagnosed (as per your other post) maybe this could be a factor in his increased anxiety rather than the medication?

 

[Gladys1946]

It could be the sertraline increase that is causing the problem rather than the Donepezil but best to discuss with the consultant. As your husband has only just been diagnosed (as per your other post) maybe this could be a factor in his increased anxiety rather than the medication?

Thanks for your reply. My daughter (a GP) thinks it might be the Sertaline so may just go down that route