Donepezil - the munchies and a couple of other questions.

[GeorgieW]

Has anyone experienced odd side effects with donepezil?

Since starting the 5mg dose on the 4th March my PWD started with the raging munchies after about a week. How do others manage this serious sugar craving?

Not sure I can get away with putting "the munchies" on the MHRA yellow card side effect warning system and the side effect that lists a decrease in appetite was certainly lying .😆

I have noticed that the urinary output has gone up - fortunately she is still aware so has been getting herself to the bathroom, a minor miracle since the bathroom and toilet are upstairs and both knees are shot, but since its about the only exercise she gets I have to keep encouraging it. I have invested in a waterproof sheet and have got the commode out of storage so that if it gets tight things are under control-but its tricky keeping her hydrated when it effectively goes in one end and out the other.

Not noticed any change in the memory other than the paranoia, anxiety and confabulations are getting worse but its hard to tell if this is the disease progression or if its a side effect or both - how did others manage this?

Oh and she is cold! always cold. is this a dementia thing or is that just her?

 

[Kevinl]

Personally I have no faith in what back in the day was called Aricept, now Donepezil since it became generic.
My wife was put on it as a trial, when it cost the NHS a lot of money, when it became generic and cheap she changed to Donepezil, same team different jerseys. I don't have a clone of her for a controlled trial of the medication and some of the listed side effects listed can be quite scary.
I never stopped giving her them but often wonder if I made the right decision, too late now.
As for the munchies she had that too when on Donepezil, when it was stopped only way to get her to eat was by cooking for one and suddenly there were 2 lots of knives and forks while we shared dinner off the same plate. K

 

[canary]

Hello @GeorgieW

Donepezil doesnt stop the Alzheimers progressing - it just stimulates the brain so that they can make better use of what they have left, but the dementia is still progressing underneath it, so its to be expected that things like the confabulations, anxiety etc will get worse.

Feeling cold all the time is very much a dementia "thing" and unlikely to be a side effect - it was a warning sign with mum that although she had previously found my home to be warm, she suddenly started feeling cold all the time (and this was long before she was started with donepezil). Its the reason why care homes are usually so hot

The dementia "sweet tooth" is also well established. OH will easily demolish a packet of biscuits almost as soon as they are out of the shopping bag, and he doesnt take donepezil, so its debateable whether this is a side effect or not.

 

[Collywobbles]

To add to the above, something that dementia does, is dull down a person’s sense of taste. The last taste receptors to be affected are the ones which sense sweetness. It stands to reason that our folks will crave sweet food over any other, as this is sometimes the only thing that has any taste to them any more.

My Mum won’t touch vegetables any more, but give her a box of Jelly Babies and she’ll scoff the lot in an afternoon.

 

[Ellie2018]

Has anyone experienced odd side effects with donepezil?

Since starting the 5mg dose on the 4th March my PWD started with the raging munchies after about a week. How do others manage this serious sugar craving?

Not sure I can get away with putting "the munchies" on the MHRA yellow card side effect warning system and the side effect that lists a decrease in appetite was certainly lying .😆

I have noticed that the urinary output has gone up - fortunately she is still aware so has been getting herself to the bathroom, a minor miracle since the bathroom and toilet are upstairs and both knees are shot, but since its about the only exercise she gets I have to keep encouraging it. I have invested in a waterproof sheet and have got the commode out of storage so that if it gets tight things are under control-but its tricky keeping her hydrated when it effectively goes in one end and out the other.

Not noticed any change in the memory other than the paranoia, anxiety and confabulations are getting worse but its hard to tell if this is the disease progression or if its a side effect or both - how did others manage this?

Oh and she is cold! always cold. is this a dementia thing or is that just her?

We had to take OH because he literally stopped eating, even the biscuits and sweets that he had always loved. Back to normal without it but obviously not got the benefit it gives. The alternative gave non convulsive seizures.

 

[Knitandpurl]

Runny nose- my husband has been on donepezil for over 5 years, since then many of the initial side effects have lessened but the constantly runny nose continues. Worse the more active he is. However the improvement in his speech when he first went on it was brilliant and his speech is still better than it was so worth it as far as both of us are concerned.

 

[Angel55]

💗 Hello

Have not noticed any side effects or any improvements either. Stability wise no we are professing along. To cut the medication some slack I suppose I don't know if it wasn't taken how quickly things would change but overall nothing sparkling as a vast noticeable improvement. It is perhaps again down to individual people and what is happening inside.

The sweet tooth has always been a thing and still continues as does feeling the cold as well but I put those down to the dementia.

 

[Dunroamin]

I am on this drug and struggle with a sweet tooth, but realise it is par for the course of this curse. So many folk not taking the drug also experience this so, no, I do not think is is anything to do with the drug. I only wish i experienced feeling the cold!! Always hot unless in my beloved outdoor cold water pool.

 

[Gemini85]

Runny nose- my husband has been on donepezil for over 5 years, since then many of the initial side effects have lessened but the constantly runny nose continues. Worse the more active he is. However the improvement in his speech when he first went on it was brilliant and his speech is still better than it was so worth it as far as both of us are concerned.

My mum is on Donepezil and started with a runny nose. I took her to the GP has it's a side effect of the medication. I got her on antihistamines and it has helped a little.

 

[Fugs]

💗 Hello

Have not noticed any side effects or any improvements either. Stability wise no we are professing along. To cut the medication some slack I suppose I don't know if it wasn't taken how quickly things would change but overall nothing sparkling as a vast noticeable improvement. It is perhaps again down to individual people and what is happening inside.

The sweet tooth has always been a thing and still continues as does feeling the cold as well but I put those down to the dementia.

My wife is on Donepezil, currently 5mg as the higher dose made her nauseous. Other than that no other side effects, and no real improvement either. But then I don't know where she would be without it. She likes to know that she is taking it so I am not about to stop.
I always have chocolate on hand, it helps at times!

 

[Angel55]

My wife is on Donepezil, currently 5mg as the higher dose made her nauseous. Other than that no other side effects, and no real improvement either. But then I don't know where she would be without it. She likes to know that she is taking it so I am not about to stop.
I always have chocolate on hand, it helps at times!

💗 Oh gosh yes what harm is a little bit of something nice going to do is my theory anyway.

 

[jac69]

My Husband got a heart rate test to see if they would prescibe that drug they wont his heart rate is under 60. for a year now he has complained of feeling cold even though the house is at 22c and as of this month he wont eat any stuff that grows on his plate his words for veg. He will eat sweets and doritos with humous and bacon rolls so that is his diet now. I tried insisting on a healthy diet but decided if thats what makes him happy let it be because his life is miserable knowing he has a brain disease makes him very unhappy

 

[Dunroamin]

There seems to be a misconception that this drug improves dementia. It does not. It merely slows down the progression.

 

[Fugs]

There seems to be a misconception that this drug improves dementia. It does not. It merely slows down the progression.

@Dunroamin you are correct and my loose language (my bad). Putting things correctly "I noticed no reduction in the rate of her decline"

 

[Kevinl]

Thank you Fugs, never explain and never complain is my mantra. K

 

[Stephenb905]

Couldn't help thinking about this thread, when my OH woke me up at 5:30 asking if I was hungry!, so down stairs we go for me to make some tea whilst my OH eats chocolate, she started Donepezil a couple of weeks ago, now thinking we need a biscuit tin ..

 

[Angel55]

There seems to be a misconception that this drug improves dementia. It does not. It merely slows down the progression.

Hello 💗

No it can't improve what isn't there anymore or bring it back either.

It might ease some symptoms but personally I haven't noticed any difference really and we agreed not to increase the dosage as you have to be careful if you have other conditions such as COPD.

 

[Ellie2018]

My Husband got a heart rate test to see if they would prescibe that drug they wont his heart rate is under 60. for a year now he has complained of feeling cold even though the house is at 22c and as of this month he wont eat any stuff that grows on his plate his words for veg. He will eat sweets and doritos with humous and bacon rolls so that is his diet now. I tried insisting on a healthy diet but decided if thats what makes him happy let it be because his life is miserable knowing he has a brain disease makes him very unhappy

I was just the same and the GP all but told me to get a grip - he’s 79 with an awful disease if he wants biscuits instead of food so be it! I still try for a healthy diet but not as hard.

 

[Knitandpurl]

I believe 100% than quality of life is much more important than quantity, if our people with dementia get pleasure from eating chocolate then so be it.

 

[Ellie2018]

8

I believe 100% than quality of life is much more important than quantity, if our people with dementia get pleasure from eating chocolate then so be it.

Sometimes it’s hard when your mindset is looking after them, I’m getting there but it’s still hard.